Feelin' Crappy UC

Just checking

2011-06-16T23:10:00.002-04:00

I went to a conference last week. It was three nights out of town, away from family, surrounded by colleagues. Many parts of the conference were great and it was good to get a few days away from the stress of my job.

I thought I had done a good job of packing and found that I had almost everything I needed. I even packed extra undies and had a book, a dvd and some snacks that I never got to. I did forget one thing, my meds. Not to smart. I went three days without my meds.

I have been living with the effects for the last 6 days. Things are just starting to normalize. I could say I chose not to bring them, just checking to see if I still have the same need for the max dose every day but the truth is I just made a mistake.

I do think I am doing better than in the winter. My joint pain has diminished and i am eating pretty much what I want.

I wish I could be happy

2011-06-04T22:32:00.002-04:00

It can be so hard to feel the happiness here.

I am so tired of feeling so alone.

I wish some one here could understand my feelings. I wish that someone here knew the real me and what i feel. I wish someone could understand this illness.

Today I am sad.

Glutin Free?

2011-05-29T00:06:00.002-04:00

I have recently spoken with two women who have attributed their improved health to a gluten free diet. Neither had been diagnosed with coeliac disease.

One has been in remission for over 15 years after nearly losing her colon.

I know it isn't as simple as this post might make it sound. But...

Food for thought.

Another friend

2011-05-15T20:54:00.002-04:00

It seems that every time I turn around I hear of another friend or acquaintance who has UC. It seems to be an illness of geography and my partner, the scientist, believes this is a disease that has been caused by the bacteria in the water that we use on our food as it grows. Once you get it, the bacteria won't go away. You learn to live with it, or not.

What do you think?

Prepared

2011-02-26T22:18:00.002-05:00

The good news for this week is that the physiotherapist I started to see believes that the pain I have in many of my joints, including those where I have recently been told I have arthritis, is caused by a flare of my auto-immune system.

The bad news is that because it is a part of my flare, he is not sure that he can help me much with the pain.

I need someone else to start thinking about UC and me. I need someone who has lots of experience but keeps up with the research and knows what is new and what is coming next. I have the name of another specialist and I am prepared to use it.

Two steps back

2011-01-20T21:32:00.002-05:00

Hmmmm...

I might have to try something different.

The blood and mucus has made an appearance.

I don't want to admit it to anyone in my 3d world. I don't want to change anything. I don't want to live like I had to before when I flared. I don't want anymore enemas.

The thought of enemas makes me feel defeated.

I keep having these conversations with myself.

More Itis

2011-01-19T19:44:00.002-05:00

I saw a new doctor today. A rheumatologist.

I looked him up on the internet before I went to the appointment and found a mixed review. Some people suggested that he didn't have great people skills and others said they had a long wait to see him.

I didn't experience any of that.

I found him to be quite knowledgeable, engaging and attentive. I didn't wait to see him at all. He was right on time. He asked lots of questions and took his time to complete a full history. He wrote detailed notes and then did a physical exam.

At the end of it all he has diagnosed arthritis and bursitis. I will have to start physio to try to relieve some pain.

I wonder how connected my pain is to my UC. But I seem to think that everything is connected to my UC!

Happy Freakin' New Year!

2011-01-03T23:09:00.002-05:00

The holidays were awesome! We traveled, went home to spend time with family, we celebrated, we ate great food and we just did everything together. This year John dealt with his feelings about Christmas early on and was able to let himself have some fun and enjoy the festivities. We spent time with all the kids and the parents and even went shopping together.

Did I mention the food? Oh the food was so good. I have been cooking recipes out of a magazine called Clean Eating. It is not for UC but it is about healthy eating and the food is so good. My sister hosted the family at her house and provided turkey and all the trimmings one night and ham the next.

We had two weeks off with no work! I had two weeks in the summer and was really ready for this time off. I had to go back to work today but it was okay since I had such a good holiday and got some rest.

My colon didn't enjoy the holiday as much. I woke up many nights and days with pain in my back and my abdomen. I have gone back to the suppositories and it has helped a little but I should probably get serious. That means going straight to the enema. It feels like giving in and I don't want to do it. I am resistant.

So far I am managing.

Hooray for the Holidays

2010-12-19T20:13:00.002-05:00

So I am beginning to relax and de-stress. It has been such a crazy year and I have been working so hard. I have had quite a few challenges with my colon and the rest of my body but this week and the week after, I will be celebrating.

I went to the movies today with my daughter. Her idea. She is 14 and still wants to hang out with me. Life couldn't be better!

Tonight I played a little piano and my wonderful man played along with his guitar. It was awesome.

My colon is a mess but it is not nearly as bad as it could be and I am having so much fun! I am laughing and lounging.

Life is good. Don't forget that.

2010-12-18T22:22:00.003-05:00

I have continued to go for Chinese Medicine. I do believe that it is helping me to feel better. I am jut not sure if it is keeping me well. Hard to be sure what the effects are.

It looks pretty nasty! I was surprised when I saw the pictures but it really doesn't hurt. I do have one of the best marks ever on my neck from the cups today. But the treatment seemed to totally loosen up my back. I was able to crack it and moved much more freely. I probably enjoyed a good 8 hours before my back started to ache again. I am pretty sure that the pain in my back is from my colon but what do I know!

To Eat

2010-09-14T22:59:00.003-04:00

I have decided to change my diet. I have been avoiding too much fiber since my "minor flare" started back in February. I have been avoiding raw vegetables, fruit whole grains of all sorts and I am just tired of it.

So I am switching gears. I am going back to my preferred way to eat. I am eating fruit for breakfast. I have fruit and veg during the day. I drink vegetable juice. This has helped me to cut the fat content significantly.

I am also cutting my sugar intake in half. I make sure I always measure and I hope that I will adjust to this soon. So far my coffee is a little unsatisfying but I know I will get used to it.

I am also not drinking as much wine.

I am continuing with the Chinese medicine and I am starting an exercise program next week.

So far it has been a week and I don't feel any different. Not worse or better. As long as I don't get worse I will continue because I know this is a better way for me to eat.

Today I ate grapes, carrots, an apple and peas. Yum.

Chinese Medicine

2010-08-28T00:15:00.002-04:00

So I have been swollen, most of my body, for weeks now. I can't take it anymore and the joint pain is ridiculous. I know I am flaring but my megga doses of mezavant, suppositories and enemas is keeping the blood away.

So today I tried something new. I went for a consultation with a woman who practices chinese medicine up the road. After the consultation, I had my first treatment which was acupuncture, cupping and massage. I might even feel better. I am not sure. The experience was pleasant and I am hopeful that it will help with some of my symptoms. I will go back again next week.

Has anyone tried this?

Legume Love

2010-08-20T22:04:00.003-04:00

Legumes, I love you.

I loved you in the curry when you appeared as lentils and garbanzo beans.

I loved you in the quinoa salad all black and lovely.

I loved you as peas in my samosa.

However, you don't seem to love me as much as I love you. Couldn't you be a little gentler? Could you treat me with the same respect that I consumed you with?

Paying for one night

2010-06-17T00:21:00.002-04:00

I should know better by now right? Yes, I should.

A couple of nights ago I lay down, closed my eyes and began to drift into lovely nothingness and then my eyes popped open. I hadn't taken an enema. I closed my eyes again and so began the internal and very private conversation:
I will go in a minute.
Maybe I don't have to go.
What could one night hurt?
It shouldn't make a difference.
I am so tired.
I am so comfortable.
I should go.
I can't get up...

That was the last thought and then suddenly it was morning.

I have been paying for that dumb decision ever since! Do not skip a night. Do not miss your enema. Do not pass go. Do not collect $200.

The same situation

2010-05-12T22:04:00.002-04:00

It has been a little while since I have added to this space. I think it is because there is little change, little excitement, little to report.

I am in the same UC boat as I have been for months. I have responded to the increased meds favourably but the effects seem to continue to be entirely dependent on the meds continuing. I am not bleeding or crying but I am uncomfortable to the point of often not eating all day so that I can work. I have some good days and some bad days. I have joint pain (it's in my hands this time). My teeth feel okay so I don't want to go back to the full dose of mezavant. I am still strapped to my box of enemas. I dream of eating with abandon and going to bed without needing to flex my muscles. I used to be able to do other things in bed.

I think I am going to go back to the probiotics. It has been brought to my attention that I might not have completed a long enough trial. So today I will start back on VSL 3 and hope that things settle a little.

No More I Say

2010-04-07T22:39:00.004-04:00

It has been more than a month that I have been back on rectal meds. I am supposed to be using two enemas a day but I had to be honest with my doctor and tell him that it just wasn't possible since I have to go to work five out of seven days. So now I am supposed to use enemas once a day for 5 days and twice a day for 2 days.

As of this moment, I hate enemas. I know that is no way to feel about this simple method of getting medication directly to the area that needs it most. That is no way to show appreciation for the fluid that gave me such recent super speedy relief to the pain, blood, mucus and loss of bowel control.

But I can't stand it. I know that very soon it will be time to go to bed and that means enema time. I don't want one more. I don't want to insert anything into that area ever again.

Today I just hate enemas.

Latest Doctor visit

2010-03-25T21:39:00.003-04:00

I went to see the GI today over lunch. I'm still not eating much during the day so I didn't have anything better to do!

It went well. I am doing much better and my doctor seems to have realized that I have at least some understanding of my own body and how it functions. He has agreed that I should back off a little on the mezavant in order to get the side effects under control. My teeth are aching and my joints are beginning to hurt again and I am exhausted. The hair... well it's coming out in handfuls again.

He wants me to continue with the enemas for a couple more months. For the next month, he wants me to use two a day as often as possible even if I can only do that on weekends. After that, at least another month with a daily enema.

And I don't have another appointment scheduled. He told me to call him if I had a problem and after 6 months to set up an appointment (which will then probably be another 4 months away). So I will have some time to manage this myself and see what I can accomplish.

I think I am going to give VSL 3 another try. I am staying on my low fiber diet for awhile and once my joints feel a bit better I will need to try to exercise some.

Oh, and he didn't mention IBS once.

Dinner is my friend

2010-03-02T23:39:00.002-05:00

For breakfast I take a handful of pills, a glass of juice and a cup of coffee. All are necessary.

For lunch I drink an ensure drink. I only like the chocolate kind. Sometimes I have some water and on very special days, I get a little more coffee. Some days I don't get to it and then at 3:00 in the afternoon I start to shake and can't think.

But dinner is my friend. I eat a full meal. My proximity to my own private toilet allows me to indulge myself in healthy portions of proteins and carbs. On occasion I even get a little cooked veg. Oh the glory of feeling full. I love dinner.

Good News

2010-02-25T22:11:00.002-05:00

I saw the doctor today and the results of my blood work were good. There is no sign of infection and I haven't lost a significant amount of blood. My protein levels were good and the inflamation has not gotten to my other parts.

Since my current flare doesn't seem to be effecting the rest of my body, we are going to try going back on enemas rather than going to a more serious medication. It seems the mezevant is keeping the rest of my colon from getting sick but is not enough to heal what has already gone wrong.

My drug store did not have any of my new enemas so I have to wait one more day before I get started and then I will have to figure out some pretty tricky timing since I am supposed to use them twice a day for the first two weeks.

I am not sure about this doctor. He has said a few more things that leave me unimpressed however, as long as he helps me find the right treatment to go back into and stay in remission I will stick with him.

Another Day

2010-02-24T21:20:00.002-05:00

Another accident.

I made it into the house but couldn't make it up the stairs and into the bathroom. Once I entered the safety of my home, my sheer will that was keeping my colon calm was no longer enough. I couldn't hold on.

Mucus and blood.

I guess it could have been worse, right?

Doctor tomorrow. I have researched Imuran and asked others who have taken it and I think if he believes it is the right step, I am going to try it.

Fingers crossed.

My colon made me do it

2010-02-22T20:34:00.003-05:00

Two hours before my alarm went off I climbed out of bed and ran to the bathroom to expel some blood and mucous. My colon made me do it.

I folded a pair of underpants and enclosed them into a sandwich baggy. I tucked this little package into the bottom of my purse. The underpants are black and match the lining of my purse. My colon made me do it.

Before I could finish checking my messages at the office I jumped up and ran to the bathroom. My colon made me do it.

Only half an hour later, I grabbed my coffee cup and raced back toward the bathroom under the guise of needing to clean my cup. My colon made me do it.

I left during the middle of a meeting of my peers. My colon made me do it.

I didn't help do the dishes after dinner because I had to urgently go to the bathroom. My colon made me do it... *smiles*

He listened

2010-02-21T21:18:00.002-05:00

I went to see my new GI last Thursday. He was about to tell me that my scope wasn't too bad, but he stopped himself and asked me how I was. I told him.

I told him how I slowly slid down a sticky slope into flare over the last 3 weeks. I told him how my pain has increased, how I am now passing blood and mucous every time I go to the bathroom, how my trips to the bathroom have increased and how I have started to have serious issues with incontinence. I told thim that all of this has resulted in my not eating the last three days until I get home from work.

He was surprised but he listened. He offered Prednisone and accepted my "no thank you". He acknowledged how difficult these symptoms make my day to day life and was glad to hear that I haven't started to lose weight. He sent me for blood work and to give stool samples and is fitting me in to see him again next Thursday over his lunch. He gave me the name of a new med that we should consider and be ready to discuss next week. He wants me to consider trying Imuran.

He is concerned that it was less than a year since my last flare, that I was on Pred so long last time and that I have had this wicked illness for 14 years. He thinks it may be time to step up the meds since my 5ASA is not keeping me under control.

I am going to read up on it. I know I will have to have lots of blood work in order to monitor this med but I also have a close friend who takes it and she has been healthy now for over a year when nothing else was working.

In the mean time, I am taking over the counter stuff to fight the urgency and staying close to the bathroom when necessary. I am also drinking ensure when I can't eat.

Hoping that things become clearer at the next appointment but at least this doctor listened.

Lost Control

2010-02-17T00:33:00.002-05:00

It happened last night in my own home. I just couldn't make it.

I lost all control.

I was mortified.

Now I am scared.

After

2010-02-15T19:53:00.002-05:00

Finally, I am getting back to this story.

Where was I?

I woke up! Yes I woke up and I was being wheeled down the hall on my bed and it was all over. I hadn't noticed a thing. What a surprise. I have never been put completely under before for a colonoscopy. This was good (no pain) and bad (no information).

My bed came to rest just down the hall from where I had been. I could see the curtained area where I had just had my test. I was covered with lots of blankets and my vital signs were checked. The nurse was friendly and good at her job. Before she left me to check on another patient she encouraged me to pass lots of gas.

I started to let go. What a fabulous feeling to just let the wind go with no hesitation. I watched the curtain and I passed gas. Then I stopped. It was a choice I made.

Another woman was wheeled into the area next to me (the other side of yet another curtain) and she was given the same instruction. She started to let it go too.

The nurse came back to check on me. I was doing just fine. I told her I had decided not to pass any more gas though. She looked concerned and asked why. I explained that my partner was out in the waiting room and he was going to drive me home. I explained that on many occasions I had found myself alone in a car with him and he had no problem sharing his gas with me. This time it would be my turn. I was saving my gas for the one I loved! She had never heard this before and she smirked at me. I smiled back. It was a good moment.

I was then moved to a chair in the hall. The doctor stopped by to check on me and he said it looked better than he expected. There was some swelling on the left side but not too much of my colon was involved. He confirmed that I should continue with the same meds at the full dose and that otherwise all should be ok. I told him I had some pain and he suggested that it could be irritable bowel.

For those of you don't know, I believe that irritable bowel is the answer when they don't know and I don't think it applies here. My pain happens when my UC is active. In that moment my joy was gone. Another specialist who believes in irritable bowel. Ugh.

I was glad to hear that my colon didn't look to bad and even happier that I was not told to go and get some prednisone. I am not happy about IB and I don't know what I think of this doctor know.

I had this colonscopy on January 22. Since then I have been bleeding. Sad but true, I seem to get a little worse each week. I now pass mucous and blood regularly with numerous trips to the bathroom every day. The urgency is increasing and I have stated to hold off on eating until I will be home for the day to make bathroom access easy.

I go back to see him this week. I hope we can come up with a plan to get this under control before it gets really bad but I am not sure how we will do that now.

Fingers crossed.

Before

2010-02-01T21:35:00.002-05:00

I sat in the waiting room for a few more minutes and then a nice nurse called my name just a couple of minutes before my scheduled scope. I returned to the side room where my former doctor had questioned me and a very nice nurse asked me some questions (did I fast, did I do the prep, did I have someone with me, the usual). Then she checked my hospital bracelet and asked if it was me. (Since I was unable to sell even one ticket in my colonoscopy lottery, I had to take the test myself.)

She had me sit for a moment as she checked to see if they were ready for me and then I was called to go right in. I walked down the hall in my double hospital gown, black socks and blue paper slippers of my own free will. Waiting for me was a lovely little cubby with a comfortable bed with fresh white linen! Lovely.

They got me comfortable and then a lovel women began hunting for a vein on my hand. She found one and then spent lots of time cleaning up the blood that went everywhere. Seems she was still working out her technique. An anesthesiologist came in and asked a few questions and then went away again. I have very little memory of him. They rolled me over onto my side and then the lovely lady who poked me in the hand offered me a "shot of vodka to start" with a giggle as she held up a vile of clear liquid. I said sure, sounds great and then watched her put it into my IV line. Nothing changed.

I didn't feel it go in. I started to wonder what that was. Maybe it was just a relaxant. Maybe it isn't working.

And then I woke up.

Guess who I ran into?

2010-01-26T19:44:00.002-05:00

The setting: I am sitting in the waiting room at the hospital. I look around and notice that this tiny room actually was a semi-private room at one time. It is obvious where beds were supposed to be and there were places for medical equipment to to plug into the walls.

There is a man and his wife sitting in front of me. He is ready for his proceedure. She is closing her eyes but holding a book. She is too tired or stressed to read. He looks calm. Notices my watch and reaches into his backpack and puts his watch back on.

There is a man sitting out of sight around the corner. A nurse calls his name and introduces herself. She asks to see his bracelet and reads his name out loud. She asks him if that is him. He laughs and says "I don't know anyone who would want to pretend they are me right now". The room rang with laughter.

There is another woman sitting to my right. She has her back to me but turns when she hears me laugh. She is heavy and has a beautiful smile.

I am sitting beside John. We both have our Iphones in hand and we are reading books. We both like ebooks. I am wearing two hospital gowns, socks and little blue covers on my feet. If I don't think about the fact that I am mostly naked, I am comfortable because it is hot in here. John looks at my socks and asks me if they are mine. They are. The only thing I was allowed to keep on.

My name is called and I think What? I look up and see a man looking at me with a friendly look on his face. Is this my doctor? I only met him once before. This guy does look familiar. He leads me around the corner and into a small interview room. He says he noticed my name on the board and wanted to know what happened to me, why I didn't show up for my follow up? Oh Crap, this is doctor number 1. This is the doctor I didn't want to see a second time and here I am sitting in a freakin' gown.

I didn't want to do this but I had to. I had to break up with him to his face. I had tried to avoid it. I took a deep breath and told him that I had cancelled my appointment because I didn't like the experience of having my appointments in the clinic. I do not like to wait for appointments for over an hour and it seemed likely that the waiting would be the norm.

Yup, that would be the equivalent of, "It's not you, its me." I was at a disadvantage, I don't like to hurt people and there just seemed to be no point to tell him that I didn't think he listened to me, that he seemed to full of himself and too sure of his specialist ways and didn't connect with me his patient. I couldn't tell him that I expect to be a partner in my medical team. I didn't tell him that he really pissed me off.

I smiled and let him down easy. I made sure he knew that I had cancelled our last meeting, I had not stood him up and then I thanked him for checking in with me when he was me.

Then I shuffled in my little blue paper booties and black socks back to my chair in the semi-private/waiting room, past the lady with the nice smile and the silent couple over to my corner.

If I hadn't been starving and if my colon hadn't been so shiny clean from the fabulous klean-prep I might have shit myself or thrown upa little bit into my mouth. But I didn't.

And all of this happened before I had my colonoscopy. I will have to tell that story soon.

The good and the bad

2010-01-24T23:10:00.005-05:00

The good news is that I am not in really bad shape. The bad news is that I am officially in another flare.

The good: the colonoscopy went without any difficulties
The bad: I have been bleeding and in more pain since the test

The good: there is swelling up the left side only
The bad: the new doctor suggested some of my pain may be caused by irritable bowel. (What a bunch of crap)

The good: my hair stopped falling out
The bad: it might start to fall out again.

The good: the test being in the hospital with many others booked seemed to keep everything on schedule. I didn't wait at all.
The bad: the tight schedule prevented much discussion with the doctor and I don't really remember much of what was said. My partner was not included in those discussions.

The good: the drugs knocked me out completely and I didn't feel a thing
The bad: I feel worse now and don't expect a speedy recovery.

The good news is that I wasn't told to take Prednisone! The bad news is that I have to increase my mezavant (the reason the hair may start to fall out again) and it can take 4 weeks before it helps.

The good: I am nearly finished with this post.
The bad: The need to post will never end.

Oh Gawd

2010-01-21T18:55:00.003-05:00

That stuff is terrible. All the things I read about it were true. It tasted terrible, smelled worse and seemed to never end. By the time I was finished I wasn't feeling too good. I was freezing and tired and miserable. I don't ever want to spend that much time in my bathroom.

I don't know why a doctor would make someone use that when Pico is so much easier and very effective.

I don't have to take any more and my lovely daughter brought me some broth, juice and jello to help me feel a little better. I just have to wait for the scope. I think I will focus on the fact that I have the day off and I will have good drugs.

Eating Extravaganza

2010-01-20T20:33:00.003-05:00

So tonight I am having my night-before-the-Prep Eating Extravaganza!

Well okay that is a bit of an exaggeration. I ate pasta out of a can tonight and I enjoyed it! I usually eat fresh good quality meals. Every once in a awhile, when no one else cares and I just can't cook something when I get home late, I eat some crap. It will probably move through me easier than fresh vegetables and fruit at this point. This scope turns out to be quite timely. I think I would be contacting the doctor if I didn't have this scheduled already. I had 5 trips to the bathroom yesterday, lots of cramps.

Tomorrow I get to use Klean Prep for the first time. I have only used Pico-Salax before and found it easy to use and effective. My new doctor prefers Klean Prep so I agreed to give it a try. I have read a lot about it on blogs over the last year and I must admit that I am a little concerned. That is a lot of fluid that I have to get down.

On the brighter side, my daughter came home and made me cookies and jello. The cookies are for tonight and the jello is for tomorrow so that I can at least have the sensation of chewing! What a great kid.

I am lucky.

Toilet Dreams

2010-01-14T21:15:00.003-05:00

I woke up Tuesday morning with a start. The image from my dream was still vividly suspended right before my eyes.

In my dream I went to the bathroom and incorrectly sat myself on the toilet. My aim wasn't good. From my body I expelled blood, mucus and parts of my colon. I looked down and there it all was on the floor and I could see parts of my anatomy that I shouldn't have been able to see in that position. I was very upset with myself for the mess that I had made. I was very upset that parts of my colon were on the floor.

What was missing from the dream was the pain. There was no pain. It just happened without any feeling. Could it be that I forgot the pain? I mean what it really feels like when you are in a flair?

If I did, I no longer have that problem. After days of discomfort, moments of concern, tonight the pain really hit. The worst of it is in my upper left abdominal area but it hurts on the right when I am cramping. I had to close my eyes, take deep breaths and talk myself through it so that I could get up and go to the bathroom. The worst of it passed, I went to the bathroom, I expelled a small slightly pink and mucusy bm.

I increased my meds back up to the full dose on Monday because I was thinking something wasn't quite right. I think that was a good move but maybe too little too late. The silver lining is that the colonoscopy is only a week away now so we will know for sure what is going on and we can treat it accordingly. I just need to get through the next 7 days.

January 2010

2010-01-04T21:55:00.003-05:00

January can be so tough. It actually snowed enough that we had to pull out boots today and brush off the car. It was cold outside and it was cold inside. Everyone went back to work and school today. Everyone I talked to, read about or heard from was tired!

I have planted myself on the couch and I seem unable to do anything productive. I am so tired it almost hurts. We had company for the last 5 days and we had more fun than we could have planned for. It was hard to see everybody go but it is also good to have the quiet and the calm now. Hopefully I feel rested sometime this year, I mean this week!

I have started the countdown now that the holiday is over. I have a colonoscopy coming up on January 22. Everything about this will be different. I have a new doctor who does this in a hospital (my old doctor was able to do these things in his office). I don't like hospitals much. My new doctor prefers a different type of prep. I used pico salax last time and it actually wasn't too bad. I had to use it twice, once in the morning and then at dinner time the day before the test. It did what it was supposed to do but I didn't have to drink gallons of yucky tasting stuff. This time I have to drink gallons of yucky stuff. I know that the colonoscopy won't really be all that bad. I will take the drugs and drift away and they will check me out and then I will know what kind of shape I am in and that will be good since I don't trust my own judgement anymore unless I am bleeding. I really just have to deal with change here because the test itself is a good thing.

I have continued to have sporadic pain, discomfort and sometimes I feel like "I need to go" and I can't. Other times I have to go! I am still fighting the fungal infections and despite the medicine that has been prescribed to me (nothing very strong as my g.p. feels they will destroy my liver) I have made little progress. I don't think I have lost any weight but I am hungry all the time and I am craving things like chicken and potatoes not chocolate and snacks. I am either so tired that my body needs extra fuel or I am starting to have absorption issues.

Festivities

2009-12-30T23:25:00.003-05:00

We have been celebrating. We have been enjoying the holidays. Oh the food and the family and the food and the friends and the food! Holidays are yummy!

We spent Christmas day in our new home, just the three of us. We had moments where we missed family but it was really nice and relaxing and it helped to make our new house our home. We left the next day to go back to the city where all of our friends and family are. We were kept very busy with visiting and celebrations. We were able to see our most important people, some friends and most of the family. I think the funniest moment for me was when my dad announced to everyone that all the gifts he was giving were things he had won in golf tournaments! He seemed so proud.

My mother looked so much better. She is recovering very well and seems in good spirits.

The bad news is that I forgot my probiotics and by the third night I was in pain. I wasn't moving much on my own and I had that old familiar pain in my upper left abdomen. The pain continued through the next day but luckily that was just while we were driving back home. With the probiotics on board I quickly found some relief.

I am glad that I have a scope coming up so we can see if things are just uncomfortable rather than concerning.

Today the boys arrived to visit here for 6 days as did my daughters friend who moved to China last summer. It is my birthday so we went out for dinner and then to a movie. It was most excellent fun. It is good to have a full house.

Hope you all had a great holiday.

Happy New Year!

All I want for Christmas

2009-12-15T21:55:00.002-05:00

Hmmm... this is not likely to be very cheery. I will put out my less than happy thoughts and then I will move one, maybe tomorrow.

I am taking my VSL#3 most days. Sometimes I forget. I think it helps my system but it is not the miracle that I wanted it to be.

I have a little pain most days. Things are not terrible, they just aren't as good as they could be. So I must continue to take care and take my meds and my probiotics. I am having some trouble with infections. I have had a sinus infection for about 6 weeks. It seems like it is about to clear up and then it gets bad again. I am also unable to get over any fungal infections. They are taking over my body and so I can't take an antibiotic for the sinus infection. My new doctor will not give me anything for the fungal infection like I have had before but she did give me a three day supply of a medication that I take by mouth that should clear my system. Fingers crossed. The one day treatment and topical creams etc did not work. I am starting a steroid nose spray.

My mom has been admitted into the hospital due to chest pain. She had a heart attack about 9 years ago and has been working on being healthy ever since. This last weekend she visited. She wasn't herself. She had a lot of pain and finally decided to have herself checked when she got home. They kept her. I haven't heard any news today. I hope no news is good news. Hope she is feeling better.

One of my oldest friends, who also suffers from UC, has not been doing too well. A family crisis lead to a bit of relapse and that lead to depression overwhelming her. She is an amazing, bright, beautiful person.

All I want for Christmas is a miracle or two.

Probiotics

2009-11-23T23:14:00.002-05:00

My first specialist helped me get through the initial diagnosis 13.5 years ago when I was pregnant and terrified. He helped me maintain relatively good health over the next 11 years. He always listened and I liked him. And that's even after he looked at my complexion and said, "Just like my wife. You will likely have hair growth from the Pred. Just don't shave."

What he didn't think much of was probiotics. As a result, I didn't have any guidance in the matter. I went to Costco, found a big bottle of something that looked good and bought it. I have been taking one pill a day for months. Last month I ran out. I didn't rush out to buy more because I didn't really think that the one pill was doing much for me. I am now not so sure.

After over a month without the probiotics, things are changing. I have started to need multiple bathroom trips per day and I am having some pain. No tears. No blood. Things aren't at a crisis but I am wondering if something is brewing.

I am also wondering if it is a coincidence that this has happened after I went off the probiotics. Lots of things are a little off, most noticeably, my ability to maintain a balance in the fungal matter in and on my body. That is terrible. It is also something I suffered from for a couple of months at this time last year. Just 2 months before my illness got out of control. Are these things related? I don't know that either.

I have ordered a probiotic off of the internet. My partner is a scientist and last week he met with many doctors doing research in the area of crohn's and colitis. One of the specialists recommended this type. She indicated that her patients had great success. It is VSL#3 (for the Canadian site). It arrives tomorrow.

Has anyone used it?

Scored!

2009-11-13T22:43:00.002-05:00

I went to meet a new doctor today. I was the first appointment of the morning and I didn't have to wait. He was on time and friendly. He noted that I had already seen a GI in my new home town and asked what had gone wrong. I told him the first one was such a big specialist that there didn't seem to be room on my health care team for me. He said that he was also a specialist and we would have to see if this would work. He grinned. He asked who it was and I told him the other doctors name. "Oh! He has an office right down the hall."

He took a history. Asked lots of questions and was impressed with some of the details that I could share. He told me it was okay that I adjusted my meds as I noticed changes but that I have to be careful this soon after such a major flare. He did not tell me that I should take more. He did not question that the meds were making all of my hair fall out. He gave me a book to take home and he had an open mind about probiotics.

He did not question my diagnosis or change it.

He did think it was important that he see exactly what is going on in there at this point so I am once again scheduled for a scope. And just to keep things interesting, this doctor prefers a different prep than my old doctor. I liked the old one. It was easy to use and palatable. This new one requires that I drink 4 liters of fluid. I don't know the name of it but I am sure that will be fun day. It won't happen until January.

All in all, this was a good first appointment. I will go back to see him again. Good news.

Nothing about UC because sometimes there are other things going on

2009-10-20T20:09:00.003-04:00

I was driving to a meeting the other day and found myself sitting behind a stopped bus. I watched the next lane in my rear view mirror and waited for an opportunity to change lanes and get past the bus. When the traffic cleared I signaled and started to move into the next lane (which was okay since this was a four lane road).

At the same time, the car sitting directly behind me decided to pull out and the driver of said car thought it would be okay to cut me off and honk at me. I was not impressed and having my wits about me, I put my foot on the break pedal and my middle finger up against the window.

As he starts by me (still honking), he sees my raised finger and we make eye contact. He stops his car. He puts his car in park in the only open lane and gets out of his car. He walks over to my window and begins to gesture and speak. I can't hear him. I have the radio on. But I do see his lips moving. I don't think he is saying anything very nice.

What is a girl to do?

I looked him square in the face and said, "Stop being a Jerk". He seemed to slow down. I said it again. He stared at me. I noticed movement to my right and checked up in time to see the bus starting to pull away. The bus left. That meant I could too.

I waved to my new friend and drove away. I watched in my rear view mirror as he walked back to his car with blocks of traffic sitting behind him all wishing they could lose control and run him down. A few lights later he had caught up to me but when he should have pulled up beside me at the intersection, he held back. Was he marking down my plates or making sure I couldn't see his? Before the next lights, he turned into a gas station and I haven't seen him since.

Waiting

2009-10-04T21:44:00.003-04:00

I have an appointment scheduled with a new doctor. It is over a month away. I have my fingers crossed that this doctor will be a good match for me. He or she will value my experience and opinion and take it into consideration. I will be part of my health team!

You can stop laughing at me now. A girl can dream.

My update is that I have more of the same. I have more joint pain and discomfort. It is mostly in my neck and shoulders but it does hurt down my arms sometimes. I have more pain in my abdomen, more diarrhea and more moments of urgency. But things could be worse. Things could be much worse. I continue to fight off this bug that threatens to make my nose run, the throat hurt and head fog.

We went away from the weekend and so I was unable to be comfortable. I couldn't go when I needed to even when there was facilities. Sometimes I just go and sit and nothing happens even though I really need to go. It is not constipation, it is comfort. I have the same problem in public bathrooms as I do in other people's homes; sometimes. It is and unpredictable complication.

Sometimes I am sick

2009-09-28T23:22:00.002-04:00

Today I didn't feel too great. I had a couple of emergency trips to the bathroom, I felt sick at lunch time and was only able to eat half a bowl of soup, and I had stomach pain during my afternoon meetings. My first thought is to blame it all on my UC. Makes sense doesn't it?

Then I think about the other things that I felt today. I woke up early and felt sick in my throat. I was able to eat dinner and then some chocolate later on. I was so tired I came to bed right after dinner and I have pain in my ears.

In between all of the bad moments I felt fine (nearly). I stayed at work all day and was able to participate.

I think I am sick but I don't think it is my UC. I probably have a bug.

As of today

2009-09-16T23:17:00.002-04:00

As of today, I have an appointment with my new general practitioner tomorrow for a physical. I will review with her how the GI appointment went and how I am feeling about his doctor. I have the name of a doctor that my friend is really happy with. I may just have to ask for a new referral. I can't imagine continuing to see a doctor who I think doesn't listen to me. There is enough of that in my life already, I will not continue to wait in a waiting room full of sick people to let a doctor ignore me.

As of today, I am still taking my original medication (mezavant). I decided not to change things until I am convinced to stick with a certain doctor. I have stopped using my suppositories and enemas because it was suggested that I should and for some reason I have decided to take that advice and not the other. I am not claiming that I make any sense.

As of today, I am out $180.00 for the prescription that I filled before I realized that I was not going to switch meds right away.

As of today, I am suffering occasional colon pain and regular joint pain. I am loosing hair at an alarming rate. I am eating well, taking my vitamins and probiotics and making less than 6 trips to the bathroom each day (although it is not the desired consistency).

As of today, I am working hard, loving my new home, enjoying my otherwise healthy family and managing my stress fairly well.

As of today, I am not getting sicker.

That is my measure of goodness. As of today, life is good.

A New GI God

2009-09-08T23:43:00.002-04:00

Yes I met a new God today. He is, "GI GOD". (Make sure you pronounce that correctly, pause after the is and say the rest in a deep announcers voice as if you are announcing the coming of a super hero.)

I have moved to a new city and I had to find a new GI Guy. My last one may have spoiled me a little because he listened to what I said and took me seriously as a partner in my health care. He also had it a bit easier as I was a novice at UC, prednisone and flares when I first went to see him. That made me agreeable and less likely to be insistent.

I went to see a new doctor today. After an hour and a half wait for a consultation, and a three minute discussion this new doctor announced that my meds needed to be changed and that I was also suffering from irritable bowel syndrome. He didn't look at the form that they had me fill out and he didn't examine me. He asked a few questions, gathered some of the information and made it all fit as per the textbook.

I left feeling frustrated. I will make the medication changes shortly (not immediately since he only gave me four weeks of medication and an appointment in 6 weeks) even though I think someof the changes could have disaterous results. I am changing from mezevant to Asocal. I am hoping that this change is for the better and that my colon feels a little better while my hair stops falling out. He also wants me to stop using my suppositories despite the fact that they are what keeps the proctitis under control (and allows me to pass anything).

I typically cycle between boughts of diarhea and a total inability to pass anything. Usually, when I can't have a bm it is because I am so swollen that nothing can get through. A couple of suppositories can make all the difference. He wants me to stop doing that and start using a laxative. Holy Crap! I really don't want my bm's to be any looser than they already are. I am not sure what to do about this advice.

And by the way, I think this whole Irritable bowel thing is a bunch of wankery. I have other parts that are irritable.

I am going to try the new meds for a month and see how it goes. Then I will return to see this doctor and hope that I can connect with him a little better. I do think I was able to convince him that the Mezavant was doing bad things to my hair. Maybe I will have to teach him one new thing about me each visit.

Stress and its effects

2009-09-02T20:25:00.004-04:00

As I have said, I have moved to a new city where I am doing a new job and struggling to find my place in this new world. I love the job and yet it is extremely tiring and stress filled.

Today I had to meet with my teem for the first time. I think close to 200 hundred of them showed. I spoke, my boss spoke, a guest shared some thoughts and then I took the time to meet as many of them as possible. It is an understatement to say that I am tired. The stress leading up to this event was building for days.

I also had family over on the weekend and that caused more stress when the regular rules of acceptable social behaviour were ignored and lunch turned into a whole day affair.

I have noticed since the major attack I wrote about that I a have not returned to normal. I am either blocked up and not going or I am going with little control. I would like very much to go back to my 2 or 3 times a day with some control and form thank you very much. I haven't had as much pain as I did that day but I have had pain.

I have also started to loose some weight again which may just be what my less than great scales are showing me or it too could be an indicator.

The good news is that my referral to a new specialist has already come through and I see my new doctor to discuss my situation on the 8th. I am hoping that new meds are in my future. What I am taking isn't working and yet the side effects are quite severe. I have lost soooo much hair. I hope I like this doctor but really I am just glad to have someone to consult with so quickly after getting here.

Shell Shocked

2009-08-18T23:12:00.004-04:00

I woke up to the sound of the alarm and decided that just a few more moments of sleep were necessary. Suddenly it was an hour later and something was not right. I felt a cramp. I decided to slip out of bed and go directly to the toilet. I barely touched the floor as I flew to the bathroom. I closed the door, pulled down my pajamas and took a seat.

The cramps gained strength. I couldn't move. At all. Not my body out of the bathroom nor anything from my colon. God the pain was extreme. The tears streamed down my face and my panic began to rise. I began to feel nauseous.

"Okay, breath, slow down, relax" were among the messages I started to say in my head. After another 5 minutes, I was able to lift myself, my pants and my hands to the medicine cabinet before running in a crouched position back to my bed. I fell onto the mattress and groaned clutching my belly. I never act like this. I prefer to suffer in silence.

My partner had to get me a glass of water so that I could swallow my tylenol. I lay in a heap. I began to worry about getting to work. After 15 minutes of lying in bed, I went back to the bathroom a little calmer and slightly more in control. I passed something. Nothing that really looked out of the ordinary so I expected more but that was it. It was over as quickly as it started and I was beginning to feel better.

I was shell shocked. I felt like I had been run over. I stayed in bed for another hour. I was able to work on my laptop as I recovered from a terrible awakening.

Then I got up, showered, dressed, put on my makeup and some heels and looked like I had been walking down the cat walk rather than squatting between my bed and bathroom.

Lets see what happens next shall we?

Arrived but not settled

2009-08-02T17:18:00.004-04:00

It would be irresponsible of me to suggest that all is great and that I am fine. However, the truth is that the move went pretty well. Surprisingly well.

We had a few issues with communication with relocation services. The dates they gave us were a little screwed up. This resulted in us driving through the rain in the dark to get to our new place in order to beat the truck that did not actually arrive for another day and a half. We slept on the floor. That sucked. The next night we slept in a hotel and relo picked up the tab.

The truck did finally arrive and all of our stuff was loaded in. When they left, the house was bulging. We could hardly move. The next day the unpackers came and that was very stressful since they just keep on opening boxes and unwrapping items that they then place on any available surface. They do not put things away. I am very grateful to them as we have a kitchen that is usable already however, my bathroom and bedroom are a total nightmare. I have no idea how to start.

Health wise, it has taken its tole. I did not have proper access to all my meds for days and moving is not good for the diet. All the work has caused an increase in my joint pain and swelling. I have noticed some improvement in the last couple of days and hopefully I will continue to improve. I would like to get my colon moving properly again. I had some serious but brief pain this morning but at least I am going again. When I first swell up on the inside, I stop passing anything.

We are very glad to be here and we love our new house. The neighborhood is exciting and busy and we have met many neighbors. They are a friendly bunch.

Crunch

2009-07-24T22:23:00.002-04:00

That is the sound of fresh vegetables in my mouth. Today I ate snowpeas. They were nestled comfortably in my chicken stir fry, made lovingly by the hands that raised my partner. They crunched sweetly in my mouth.

My daughter's health

2009-07-20T22:29:00.004-04:00

I didn't update on her health yesterday because I thought she deserved a post devoted only to her.

My fabulous daughter had two surgeries, one after the other. The first day she had a monitor inserted in her skull to measure the pressure of her CSF. She fasted all day before the surgery and then was not able to eat after as there was another surgery booked for the next morning. She was miserable but she did her best not to take it out on everyone.

The next morning they came to take her to surgery again. This time was a little harder. She was already so tired and she was so sick but she hugged me, wiped away her tears and was the most cooperative teenager you have ever met. She is really amazing.

When we saw her after surgery she was smiling. She said she felt better. The doctor told her that he changed the valve in shunt and she cried with joy. Even after surgery the doctors did not think that they had done anything that would help. They asked what we would do next.

To make things even more challenging, we were in the ICU the whole time. This meant no visitors but me and my partner. It also meant that she didn't have access to a bathroom. She had to put up with the toilet being delivered to her bedside. This did not make her happy.

She endured and was released from the hospital the following day.

Two days later, as we sat eating lunch, she smiled at me and said, "I don't have a headache". It had been 15 months since she could honestly say that. I haven't been able to slow her down since. She is constantly on the go, always talking and growing like a weed. She wants to go out all the time, she sits up at the table to eat and she doesn't spend all day in bed.

I couldn't be happier about how she is now. I wish this could have happened sooner. I wish they had listened to us and hadn't sent us on those many wild goose chases. I wish she didn't miss so much during the 15 months that everyone told us there was nothing wrong.

We fought hard and we finally got the results that we needed. She gets pain relief. I get a full fledged hormonal teenager...

I'm Home

2009-07-19T22:47:00.002-04:00

I've been travelling for work for the past 5 weeks. I haven't had enough time or energy to keep up with anything.

The update:

While I was sick I had two very important job interviews. My partner was being relocated and I needed to find a job. I was successful and was offered the best job I have ever had.

In June I started to travel every week to work and then back home each weekend. I not only had to adjust to working again (after being off for 3.5 months) I also had to endure the long weekly drives and staying away from home and my family.

During this time I came to the decision that I am not Super Woman (despite what I may have told you before) and with the help of my golden lasso of truth, I admitted that I needed to give up something. I have taken a leave of absence from school. I have a year to determine if I can manage this new job and school at the same time. I doubt that I can but I couldn't clean out withdraw just yet. I worked hard to get into that masters program and it is hard to give it up.

Now I am home. We all move to the big city by the end of the month. We are all looking forward to the adventure and at the same time we are in denial about the people and places we are leaving behind. We are not saying goodbye to anyone.

The UC Update:
I have been off Pred for 6 weeks.
I am in remission (at least I was...)
I am taking mezavant and using suppositories and enemas every day.
I am loosing hair by the handfuls.
My joints hurt so much that I have trouble sleeping, walking and sitting.
My swelling has just started to worsen and I am concerned that it might be a sign. Last week, the swelling was so bad in the morning that I couldn't put on my own shoes. I had to go out and buy some more that I could wear to work.
I am bloated, not moving much and starting to experience some pain in my colon area.

Hopefully this next week will give me the opportunity to rest and maintain.

Redefined

2009-05-31T01:12:00.002-04:00

I have not called the doctor.

I did some reading, I connected with some friends with UC and I decided that I was going to wait.

What I needed to do was clearly define what symptoms would require action and what that action would be. I developed an action plan! Based on my plan, I don't need to call the doctor yet. I am not bleeding and I am not suffering from diarrhea. So, if I don't get to that point, I won't have to stop my tapering or make that emergency call.

I am having pain in my rectum so I have increased my use of enemas to twice daily and I am using my suppositories again. Every time I go to the bathroom I put in a couple. I have also spent more time resting. It seems that this three component approach is helping. I don't know if it is one or all three things, but I am not in nearly as much pain and it is not all day anymore. It has really decreased.

So I will continue on with this plan. Next week we will be in hospital. My daughter is finally having surgery. We are hoping that she finds relief from her pain. I will have to be careful that I remain mindful of my own health while I support her.

The week after we go house hunting.

After that I am off to a new job. I will be well.

Avoidance

2009-05-27T13:30:00.003-04:00

I am avoiding what I know I have to do. I need to call my G doctor. I know that I am continuing to taper off the prednisone and things are not all okay. I am burning and irritated and uncomfortable. There is pressure and a feeling of urgency. It stings.

I also can not stand any more time on predinisone. I am a basket case. My mood swings are higher and more difficult to deal with every day. My poor family have had a hard time dealing with me. I also have no stamina because of my swelling and joint pain. And then there are all the other side effects like acne, hair, moon face, munchies, sleep disturbance and my teeth are so sensitive. I just can't stand it. I need a new drug. I can't do this one anymore.

For now I am being very careful with my diet, I am spending a lot more time in bed again and I am using my enemas twice a day. It's got to help. I will call tomorrow. I promise.

Absent Minded

2009-05-24T22:51:00.003-04:00

Bathroom: Variable results. I usually go once a day if I take a child's portion of Metamucil. If I don't, I don't. Some days I go 4 or 5 times. Some days I don't go at all.

I can't believe that I completely forgot about this blog and stopped posting and reading. That is not like me but since I have been sick I have not had all of my brain cells working properly. I am not sure but I am more likely to blame that on the medication rather than the UC. The truth is that I got caught up in some unusual and stressful situations and was not following my routine. That was all it took. And I disappeared.

I went to visit a friend for a couple of days and while I was away, I interviewed for a job. This was a second interview for a job that I really wanted and thought was out of reach. I flew by myself for the first time ever and spent three days away from home eating grocery store prepared chicken and dealing with the big city, the big job and the big stress. You can guess the effect that had on my health.

But wait, there is more! Then I came home and pepared to take my daughter to the hospital for at least three days during which she was scheduled to have two brain surgeries. She has a shunt that doesn't seem to be working correctly. They need to test it and explore it. At the last minute they cancelled it. We went back home. We were disapointed and upset. She is bedridden.

For the next week we worked to get the house ready to sell. It was hard work. We ate out often because of the fatigue, the celebrations and the house viewings.

On Thursday I was offered the job I dreamed of getting.
On Friday our house went on the public market and sold in just a few hours.

I have been resting ever since. I am back on my home-prepared chicken.

I have been fighting with my colon. It is not happy and the pain this weekend has been pretty bad. I am paying for my adventures. My pain is a burning and stinging in my rectum and most of the time I feel like I need to push out my colon. There is a constant feeling of needing to relieve myself but there is nothing in there about to come out. I think I am all swolen. There is no relief.

I am still taking my medication. I use the salofalk enema at night and I have also used it during the day the last two days. I also take the same medicine by mouth in the mornings. I have stopped tapering off the prednisone. I was starting to have some minor signs at 30 mg but I went down to 20 before holding. I have been at 20 for 11 days. I am not getting better but I am not willing to go back up. I will call my doctor tomorrow and let him know. No more prednisone, it makes me completely crazy and miserable. I need something else.

Get it and Got it

2009-05-13T15:43:00.003-04:00

I have been traveling. I have been carefully trying to do things that need to happen for the future without overdoing it or stressing myself out too much. I sit presently in my friends dining room in a city far from home. She makes me comfortable.

I had an interview this morning. There was a new element of stress involved in the whole interview process because my colon had to come along and it isn't behaving itself, at least not as well as I would like. It has been very noisy for the last two days but it is not letting anything pass. I have been good, sticking only to the foods that I have already established as acceptable and ok for me and I stopped the Metamucil for the two days before the interview just in case. It went very well. I did a good job and I think I provided them with a fair and fabulous representation of who I am and what I have to offer. Hopefully, I will be a good fit.

Now I have a day to relax before I travel again. I couldn't drive. I can't concentrate or remain seated for that long. I flew. It went well. No emergency bathroom trips. However, I haven't had any bathroom activity since I left home and that isn't so good. I need to go! I have some increase in pain and tomorrow is another drop down one pill day. I will be down to four. I can't wait to be off them.

The great thing about my visiting is that my friend totally understands all of this. She was diagnosed with UC a couple of years ago. She has battled with the meds, the symptoms and side effects and all the other things that go along with it. It is nice that we both get it, but incredibley strange that we both got it. This is taking sharing to a an all new and strange level. She is in remission right now and is eating as she pleases (well, she is a vegan, and so her diet is already limited in my opinion!). She is dealing with nasty medication side effects though.

When I tell her what my bm looked like the other day, she doesn't ask me why I looked. Instead, we take a moment to discuss how we now study our bm's even more than we looked at our children's and how important that has become. We laugh. When I say I had to run to the bathroom she knows what that means from her own experience and we can share our moments of total defeat and success knowing how the almighty colon can suddenly rule your life as your strive to nurse it back to health, and keep it firmly attached to your body. We know what we give up, what we volunatirly sacrifice for the colon.

P(red)MS

2009-05-09T22:41:00.003-04:00

Yesterday I completely lost my mind. Usually someone with the ability to self screen and the discipline to choose when to speak, to whom, about what and in what way, I rarely lash out, and I rarely 'react' in haste. I have angry moments like anyone else, but they are rare and I usually find them much more traumatic than those around me. Normally, I am an underinflated balloon that can have a sharp needle pressed against it without bursting.

Yesterday I woke up feeling besieged by the many responsibilities and tasks of the day ahead. I got up and started to cross things off the list. While I didn't feel angry, I did feel stressed and anxious. It would be fair to say that I was humourless. Oblivious to the moods, wants and needs of the others in my environment, I focused on each task and each of my basic needs so early in the morning. I was overinflated and wouldn't withstand contact with the terrible popcorn cealing that is in nearly every room in our house.

My resting zone was on the red line (or should I say the pred line). In an efort to protect myself, to keep myself from becoming truly hysterical, all threats had to be dealt with quickly and efficiently. There was no time to be tactful, no extra energy to explain, just a flash of dark eyes, a look that meant death and an order barked in the direction of anyone who was about to push a button, anyone who had already strayed into the danger zone or anyone who seemed oblivious to the state of my mental health.

This reaction to threat, while self-protection, was not helpful. It triggered a negative response that was much worse than the original trigger. My left foot was placed firmly atop a bug to squash it and it went right through the floor.

I realized today that this wasn't just a pred mood swing. This was me on PMS on Pred. Pred is not responsible for everything that is wrong with me or my life. It just makes everything worse.

My Own Undoing

2009-05-06T22:13:00.004-04:00

Bathroom: 3 (All day urgency and that almost burning irritated feeling in my colon. Realized about an hour ago that this was a feeling that I had on my way to remission and then it went away...am I going in the wrong direction?)

What I have been doing is not exactly everything that I have been told to do. I have been following some of my directions. I am still not eating vegetables (except spinach and avocado) or fruit (except applesauce and berries). I am still eating primarily white bread, pasta, rice and chicken and I added more sauces as directed. I eat a few M&M's every once in a while when I need some sugar and I cut out the soda in favour of juice and water (half and half or just water). I am taking a probiotic, multi-vitamin, vitamin D, Calcium suplement and of course my meds. Today I went down to 30 mg of prednisone.

But I also started to take some metamucil. I am taking a children's dose every day. I was going crazy because I couldn't pass anything. The day after I started taking the metamucil I started to have bm's a couple of times a day. They are mostly formed with just a tiny bit of mucus and nothing changed about them except that fact that I passed them every day. The urgency is the same and so is the consistency. I suspect my doctor would not be pleased because I wasn't supposed to do any drastic diet changes but he did say I could slowly start to change it. It is just so good to be able to go. I stopped for a day earlier in the week and immediately stopped being able to go. One day without was enough for me to think that it was helping rather than hurting.

I have also had a few things that are not on my diet that I didn't already cop to like cake, a tablespoon of peas (0nly once and there was no difference the next day), some snack that is supposed to be an alternative to chips but is really just puffed cardboard that has some salt in it (ate that to keep me out of the chips because I could read all the ingredients and they weren't so bad), and mayo on my sandwhich the other day but no one said anything about mayo so I don't know what list it is actually on.

Now I have this feeling return in my colon and I notice I am crampy today. I have alien belly. I can feel my colon as it clenches on the right and slowly squeezes all the way around. It is so strong I swear if I lifted my shirt you would see it under the skin like a baby or an alien waiting to claw its nasty way out. So the thing is that I have done just enough not right to make me wonder if my bad feelings today are of my own doing.

I think it is most likely the taper off prednisone that could be responsible for the burning. I just don't want that to be the answer. I want to taper off easily and manage this with the other meds and the diet. I am also dealing with some pretty bad dehydration (evidenced by my wrinkly hands and feet) and non of my other side effects have gone away yet.

Prednisone

2009-05-05T14:46:00.002-04:00

Bathroom: 2 (Not emptying today. There is lots to go.)

I am tired of prednisone. I am tired of the acne, the hair on my face and the need to spend long hours in front of the bathroom mirror with wax strips and tweezers, the round moon face, the change in my body odor that makes me smell much more manly, the need to snack, indegestion, restlesness, not sleeping, the pain in my joints, the fatigue, the muscle weakness and pain, dehydration, increased thirst, flaking skin, and mood changes that are driving my family crazy.

Some of this started right away when I went on Pred. Some of it built up over the last two months and keeps getting worse or at least is staying the same even though my pred dose is getting lower. The rest of it, like the flaking skin, and dehydration seems to be new since I have been tapering.

My fingers are wrinkly and I am very thirsty. Some times I have to run to the bathroom because I have to pee so bad so suddenly.

I am thinking positive thoughts because I am staying on schedule for this taper. I will be well and I will be off prednisone. That has been decided. There is no going back.

Different medical focus

2009-05-04T23:47:00.003-04:00

Today we went to the hospital.

Pook's first appointment was with pain management. They were late. After half an hour of waiting in a packed waiting area that was more like a pen, we let them know we were moving on to another part of the hospital for her next appointment.

We got to the second appointment on time and went in immediately. We were seen by a nurse practitioner, medical student and surgeon. They all had many questions, listened intently, and came up with their own conclusions. Our surgeon still does not believe that the shunt is the problem however, our insistence that something needs to be done now has lead him to take the next step. He is booking her in for another 24 hours of ICP monitoring followed by exploratory surgery. He says it is possible that she is no longer shunt dependent, that her shunt is blocked or that it is overdraining. I am asking that a new valve be used.

Now we must wait for the dates for all of this to happen. It isn't so easy to get the OR two days in a row. It will probably be another two weeks before we have any action. At least we are moving forward. None of us can stand to hear one more doctor say it is migraine or ask about stress. She has been unable to recover since her last surgery - that should mean something.

She was pleased with the results and is waiting for surgery and hoping she will feel better. She is showing no fear. She is miserable though. Really not well tonight after a long day, not enough sleep, and too much time upright.

I can not say how much I hope we find the answers.

7 pred and counting

2009-05-03T07:18:00.003-04:00

Bathroom: 0 but its still so early! (I went many times yesterday - 4 or 5 - I had a sense of urgency and my insides felt irritated and raw but there was no cramping or crying in the bathroom. When I went, I just went! It came out easily and was formed. Ha!)

I am wide awake and have been since 6:30. I was very tired last night and went to sleep without taking my Ativan. This is the price I pay. If I don't take the drugs I can't stay asleep. I slept for 6 hours. I really needed more.

Yesterday was a crazy busy day. I worked on my weekly readings and comments until about 3 p.m. and then I got started on house de-cluttering. We have painters coming on Monday morning. We have to pack up a lot of stuff that we won't unpack for the next 90 days. Our house should be on the market within 2 weeks and we will continue to look for a house to move to. We got the living room, dining room and front hall done yesterday. Today we have to do the kitchen and sort through the basement so that we have a place to start putting all of these boxes as we fill them.

For dinner, I ate home made chicken rice soup! I had even made the broth myself and it wasn't bad. To the average human it probably would have been bland but to my starved for flavour and variety taste buds it was awesome. The added benefit that I really was going easy on my colon made it taste better.

All of the activity yesterday left me exhausted. My joint pain was ridiculous. I even took Tylenol. I keep forgetting that I don't have my strength back. I get up and expect to just be able to do what I used to be able to do. When I get really tired and can't continue I am surprised. Again and again.

My side effects from Pred don't seem to be changing yet. The acne is out of control, the hair growth and moon face are keeping me far from mirrors, I am starting to gain weight and I want to snack so bad at night it is like I will die if I don't eat. Yesterday was my first day at 7. I am counting the days and the pills. I can't wait to be done with them.

School days

2009-05-01T23:08:00.002-04:00

Bathroom: 2 times that produced something (dozens of trips to the bathroom for nothing due to urgency and pressure - GRRRR)

Yesterday was a day at home. I had a few trips to the bathroom, lots of pain in the morning and then it all got quiet. The rest of the day is a blur. It is just like all the other days. I don't really remember it. I don't think there was anything interesting about it.

I spent the day reading and working on this weeks course load. I have been having a difficult time getting back into the swing of things. I only had a week off and now I can't seem to find my groove. I can't even read a complete paragraph without my mind drifting off somewhere else. This will get better.

We went out and got some boxes today. We start de-cluttering tomorrow and preparing for the painter who is starting on Monday. I also went to the drug store and picked up some metamucil. I don't know what this will do to me but I hope it does something good! I took the children's recommended dose. Fingers crossed. I also got a bunch of mixed berry apple sauce because I need more fruit and I need it now! I wish I could eat banana's (allergy).

There are other things going on but they must remain secret for the time being. Too amazing to share. It's a luck thing.

I am having a hungry evening. I just want to eat. and eat. and eat.

I note a theme here. The theme is that there has been very little of interest going on either in my days or in my head. Time to work on that I think. I will creat interest.

I took some happiness.

2009-04-29T20:39:00.002-04:00

Bathroom: 3 more times (all produced f.m. and mucus, but the cramps and pain were excruciating and I guess I ate something that my colon doesn't like or it simply is letting me know that it is still in charge not matter what the doctor says and that it will behave when it wants to)

My appointment went well. My doctor basically said you have a sick colon, get used to it. He said it with kindness but he didn't try to tell me all would be fine now. I do like him. He had some more suggestions about my diet (no roughage, more protein and carbs and I can add some sauces) and he frowned about my spinach and cooked carrots. He said I should not start focussing any more on my food or I will go crazy. I said "you mean crazier". He smiled. He has put me on a new med called mezavant (the newest form of Mesalazine - 5 ASA - slow release). The pills are bigger than anything I have ever swallowed. I choke up when I look at them. He has encouraged me to call if I have questions and set another appointment for August. He has also told me to respond to my body. If I start to flare I am to stop tapering the pred and go back up 5 mg for 2 weeks and then try again. As I said, I like this guy. I will try what he tells me. Except that I am not giving up my spinach. I needs vegetables!

After that I had to take my medical certificate in so that some one will pay me for some of this time off. Then I went for blood work to see what sort of shape I am in after weeks of pred and before mezavant takes over. From there, I went to get my new drugs. I walked around Costco waiting for my prescription, hoping that I would be rewarded. I hoped and prayed that around at least one corner, at the end of one display, there would be a woman dishing up lovely little bites of cheesecake or something chocolaty. There was NOTHING! I was all out of energy and I had to go sit by the pharmacy and wait. Sick leave finished, no pay and no free food also means no damn shopping at Costco.

Have I tugged on your heartstrings enough or pushed your "this woman keeps complaining" button enough? No! Good.

I got home and went to the bathroom and the pain started. My colon was screaming. I sat on the toilet and it took all of my will power to keep from slamming my fist into the wall beside me. My legs started to shake. I couldn't finish. I had to go to bed. I lay there in a ball.

School started today for me. I haven't accomplished very much with everything else going on. I did a little bit of reading but I know what I will be doing tomorrow morning.

I also spoke to the hospital today for Pook. We have an appointment for Monday and a plan to go to the ER if we need to be seen sooner. We don't want to go to the ER because they won't believe there is a problem with the shunt, they will give her more medication for migraines that at the least will not help and at the worst will make her sicker (again). And all that will require hours of waiting and starving and I am not in great shape for any of that. Wish us luck. We stayed home today. We could end up there tomorrow. She lay on the couch all afternoon and will not even stay upright to eat.

Finally, at least for now, we are keeping close watch on the flu situation. It is of interest. I am most stunned by the ignorance of some people like those countries that will not purchase American or Canadian pork because they are afraid. You can't get the flu that way! I hope that this resolves quickly and with few deaths and the very best outcome possible.

Oh, I also ate a good dinner. I made myself a very mild chicken curry. I couldn't wait another day. I added sour cream and chicken stock and some light coconut milk to make it mild. It was soo good with rice! and I ate a little bit of avocado on the side. Yummy!!!!

I needed something happy and good. I took it.

Sergeant Fred Colon

2009-04-29T09:34:00.002-04:00

Bathroom: 1 (Easily expelled soft and mostly formed with a messy 'mucusy' finish and lacking in aromatics)

Fred Colon seems a bit lazy today. Too lazy to kick up a fuss anyway. I felt pressure and urgency and surprise, surprise, there was a performance. This was good. I no longer expect things to work as they were once expected. I expect Fred Colon to stand around, lean against the closest ulcer and try to hide below the radar as he puts pressure on my rectum. If possible, Fred, will pretend to not even exist.

Today we are going for a visit to the GI. Sergeant Fred Colon is likely somewhat shaken at the prospect of facing a superior and so preparations have been made. He has given his boots a shine and straightened his uniform. Must look our best. Must not cause complaints or the nasty scope may invade our easy assignment.

I just have to come up with the questions to ask. How do I know when things have gone too far? I don't want to get that sick again. I would rather catch things a little faster. I need to give Sergeant colon a swift kick in the ass much more quickly than that.

8 pred, 2 A's, 1 GP

2009-04-28T15:49:00.003-04:00

Bathroom: 3 (some solid ending with painful crampy messy stuff and mucus. Feeling like I need to go all day. Gotta love that urgency!)

Went to see my GP today. He had reports from the GI to review and then we assessed my overall health. I am so much more than just a poorly behaved colon you know! The colon and prednisone make things complicated so we are sort on hold to see how things play out. My history suggests a need for concern over anxiety and depression but both are affected by pred so we will get a consult from a specialist before we put any more meds in my system. In the meantime, I am off work for a while longer as I try to build back some strength and get over the prednisone side effects. I am really looking forward to the joint pain leaving me, being able to sleep again and feeling like eating when I am hungry rather than just wanting to chew and swallow all the freakin time. I am lucky. I have a great doctor who treats the whole patient. He also cares for my daughter.

I have been crampy most of today and I am not sure if it is something that I snuck in my diet yesterday. I took a trip to the health food store cause I was running low on sunflower seeds and I wanted to pick up a couple of treats for a friend. While I was there, I picked out some snack things that I thought I might be able to eat. I only tried 4 bites of one. The other thing I did different was eat a muffin yesterday and this morning with some flax seed and a couple of berries. I have been trying to add a little bit of fibre each day (as directed by my GI) but there weren't any guidelines so I am guessing and trying to do enough to benefit from without doing too much. I have no idea what I am doing. I am guessing. I look each idea up on the internet and hope that I get it right. I am trying to drink more water.

This is also the first day at 8 pred (40 mgs). So I could just be getting accustomed to a lower dose. Only time will tell.

I was going to have pasta tonight but I might have to settle for some potatoes and chicken just to let things settle. Not sure what to do.

All of my marks are in from the last courses and I earned an "A" in each. I am now getting reading for the next round. The semester actually starts tomorrow. I spent the afternoon printing and setting up my binders etc to get started tomorrow. I have to figure out what time of day I can think. Right now I am not sure. I can't think now. I have to get sleeping better I think. I will try tomorrow morning after the boys leave and while Pook is still sleeping.

I do have to remember that I see my GI tomorrow though for a regular appointment. I am not sure what he will do other than say that he is glad things are moving forward. I want an idea of where we will go from here. I want to know what sort of maintenance plan he is thinking for me. Will there be any other meds other than the 5ASA enema? I don't even know what to ask him. He is so busy and he forgets from one visit to the next or one conversation to the next and then I feel like he hasn't answered the question correctly because he wasn't considering all the information. Grrrrr. I think I will try to make to a list. I am so new to this.

Back to routine

2009-04-27T09:54:00.002-04:00

Bathroom: 1 (huge, four days worth, thank you spinach, thank you sunflower seeds, thank you juice and water, thank you being home in my own bathroom. It was large and came in two parts. The first was snake like, and easy. The second was messy and crampy and painful but such a relief once it was gone. I think there is more)

It is good to be at home. I slept last night under my quilt. The quilt that I made. It took me a decade and I had to pay someone to finish it. My mom took it away from me a couple of weeks ago and delivered it to a lady who happily finished the edges with her machine. I still did most of the work and I am thrilled to have it finished. It is so big and blue and I am so happy. It kept me warm, not hot. It was good.

I have to spend some time today updating all my medical stuff cause I have two appointments this week. One with my GI and another with my GP. My GI is happy with the progress of my colon so I have to figure out what to ask and try to get him to suggest a maintenance plan now that my flare seems to be in remission. I need my GP to help me rebuild my strength, manage the ongoing pred effects and anxiety that I am already more than prone to and to figure out how to best care for myself. I also need him to sign some forms for me since I have no more sick leave and must get some insurance money.

I also need to go to the health food store today to get some supplies. I need more sunflower seeds. They really help me when I need to chew! They haven't caused me any troubles and I think I will continue to nibble on them. I will also talk to the people who work there and see if they recommend anything else.

I have to write a couple of very important emails this morning before I go out regarding references for the jobs I am now applying for since we are relocating. I have other relocation tasks to work on as well.

I have two days until my next courses start so I have to make good use of my time and at the same time, Pook was very ill yesterday and I could end up spending the entire day at the hospital again. I just don't know what to expect.

And around all this, I have to rest, eat small meals that will help my keep "moving" and try not to get too stressed!

Sounds like a good plan!

On the Road

2009-04-26T19:55:00.003-04:00

Bathroom: It was complicated. On Friday I couldn't stay out of the bathroom. I just kept going and ended up with diarrhea and mucus and terrible cramps and pain. It was not pleasant. It did stop in the afternoon and I haven't been able to go since. I have urgency and I felt like I needed to go the whole way home.

I got through the interview. The stress was compounded by the new city, the taxi ride to get there (cost me $40) and the fear that something would burst forth from colon critter and interrupt my train or thought or an otherwise pleasant sensory moment. The interview was a big one. It was the sort that leaves you sitting with your jaw on the ground when you get the call, wondering if they really meant to call you. I was honored to be invited to be interviewed. I had to go. After, I managed to get myself lost looking for the subway, but I eventually found it. I took the subway by myself for the first time ever (huge accomplishment for me even if it seems pretty mundain to average folk) and got back to the area I needed to be in for $2.75. Then I got lost again and it took me over half an hour of wondering around to get to my hotel room. Part of the reason that I was lost for so long was that I was so tired and I just couldn't move any faster. As I made my way, I stopped and got some applesauce and juice to refresh me and some band aids for my sore feet.

We had planned to go out in the evening, maybe for drinks or dinner with friends but I just wasn't up to it. I was able to eat some rice and chicken and lie in bed and play stupid games. I couldn't even type email. My brain was finished. Too much stress, too much thinking.

We came home Saturday. I was still not well so we were unable to visit with anyone before we left. The drive was long only because of my constant feeling of urgency and inabiblity to releive myself no matter where we went.

Once home I couldn't wait to drink juice, eat spinach and sit in my own bathroom. I spent the rest of the night in a manic sort of state. I couldn't do anything but watch bad tv and surf the net but I couldn't sleep. At 3:00 I made myself take an Ativan and I still didn't sleep right away.

That was my first road trip with UC. I know it was not horrific. I know that it actually went well. I will be glad when I know what to expect and when I can plan and feel prepared. I really didn't know how I was going to manage it.

And now I would just like to poop. I would like very much to empty my colon. Please.

Thank you.

Accomplishments

2009-04-24T08:43:00.003-04:00

Thursday:

Despite long lasting effects of Ativan, got out of bed, packed bag, tidied, readied self and got out of the house. Assisted child in doing the same. Made it through a 4.5 hour drive from one city to the next. No accidents. Dined in a restaurant - they had chicken, gravy and mashed potatoes on the menu! Dealing with stress, eating carefully, and resting were all high on the list of priorities.

It is all for good reason. May be risky behaviour at this stage in my recovery but very necessary.

The performance is this afternoon.

Amuck

2009-04-22T20:27:00.003-04:00

Bathroom: 0 (urgency, discomfort, lower back pain)

Rather than making any big decisions or announcements based on careful thought and consideration, I have instead allowed my feelings to pull me this way and that way all day. My colon is being a bit rebellious me thinks and it has taken over my mood and run amuck.

I made another roast chicken today. After I strained the gravy I stood over the pan and picked out all the bits of cooked carrot. Those organic carrots were so damn good that after cooking for hours they still had form and tasted like freakin' carrots. Damn they were good. I looked ridiculous. So! I didn't eat the onions or celery okay.

I tried to do some work. I have not been to work since February. I have things that should have been done a long time ago. I have not been able to get to them. I tried today after checking my email. I should not have looked but I did what I felt like doing instead of what was good for me. I got my work folders out and started trying to put this report together. The anxiety started to build and the discomfort got worse. My entire body became fatigued and started to ache. I got up and walked away. Went back to fiddling with the chicken.

While I fiddled with the chicken I felt guilty about the open document on my computer that my colleague really needed and I went back up. The feelings got worse and they dictated my actions. I had to abandon ship. I should not have started in the first place but I had to send something to her. I packaged up everything and then wrote a covering letter explaining that I could not finish the report and what I had done up to that point. Being the control freak that I am, I also wrote up what still has to happen to finish the report (the way that I would do it). I did let it go. I sent it to my boss and my colleague. She will finish it and it will be awesome.

I have one more work thing that I should do. I am immobilized to start. Maybe next week. I can not do it.

I have not read anything for school. I don't want to. I want to eat bad things. I am watching bad t.v.

I finished preparing dinner. I made them all eat roast chicken dinner again. I think they are getting board with it. I adore it cause it is filling, it is tasty and I can eat it! They have had it once a week for at least 4 weeks now. Not much if you ask me. I eat it 3 times a week. I eat chicken almost every day. No one commented. They ate and went away. I snuck some peas onto my plate and ate them. They were green and good. Amuck.

I have to contact a couple of people tonight and prepare a document of a more personal nature. This is important and I need to do it. I need to prepare a proper folder, print out some documents, a map, and do some reading. Amuck, Amuck, Amuck. I am spinning.

I make apple turnovers. The kind that comes out of a can. The kind that you stick a spoon into and the can actually pops open and the dough begins to expand. Can you imagine what kind of crap is in that? I shouldn't have things like that in the house but I wanted to buy an apple pie on the weekend and I couldn't find any. The first week I was sick, I ate apple pie for breakfast. It was the only thing that I could make myself eat. Then the doctor got all strict with my diet and I had to give it up. I want apple pie now. I had to settle for pop and fresh. Oh god. Oh, and I burned them.

I am now shoving plain unsalted sunflower seeds into my mouth. Will this make it all okay?

I picked up my medical diary a couple of times today. I have trouble remembering the days that I can't go compared to the days when I can. I can't remember what I ate yesterday or if I took a multivitamin. I am supposed to write it down. I didn't. Not a word yesterday. Not a word today. It is within reach right now. I don't want to do it.

I think maybe I am angry.

10 Take 2

2009-04-22T09:24:00.003-04:00

Bathroom: 0 (couldn't produce a thing this morning. I am being punished for the M&M fiasco that I allowed to occur. I am gurgly and full and I still feel the urgency.)

Good news today inclues a final mark in my masters course. Looks like the final mark will be a nice solid A. I am just slightly sad that I missed the A+ by 1.2 marks (crap that was close) but I am not going to dwell. I am pleased with this result. I worked hard and I did it during my first really bad UC flare. Now I am just waiting for the exam result but I don't expect to get that before May.

I celebrated with more berries for breakfast with yogurt and a little muffin. Keeping my eating on track is important now. I don't need to take too many chances right now as I am tapering off the prednisone. I have to stay healthy for Pook, in order to get back to work and to start the many tasks involved with packing, selling, moving, and job searching. I can feel my heart rate increase just listing all that.

Simplify. For today I will do a little research regarding a job I have an interest in. I will also prepare a piece of work for one of my present coworkers. She has been waiting for this for months as I have been home sick. Short checklists make this manageable. Deep breathing and a little walk on the wii fit board might help too.

I am still trying to think of a good snack for when I get the munchies. Maybe I will go over to Rainbow foods and see if they can make some suggestions. They are so helpful there.

It is also chicken roasting day. Can't live without my chicken!

Todays wrap up

2009-04-21T22:15:00.003-04:00

Bathroom: 3 (continued feelings of urgency all darn day, some formed fm and mucus, lots of cramping and pressure, very uncomfortable)

Spent the afternoon at the hospital with my little one. Her headache was much worse, she was nauseated, she looked terrible, etc. The nurses were awesome but the doctors looked at their precious images, saw no indicators and dismissed our concerns. And that was how we quickly ended up discussing the usual and very nearly inevitable migraine headache. Grrrrrr. They gave her another medication - which seems to have done nothing but given her diarrhea, poor thing. Once again we had a new resident trying to tell us that she should take Advil the moment she starts a headache and that if she didn't have a shunt migraine would be the obvious diagnosis. I am a little tired of being told this same line of crap over and over again. The good thing is that her surgeon will get the report that she was in and that we want an appointment immediately. We have decided that it is time for a revision. This shunt is not working for her. She feels worse now than she did when we went in this morning.

The ER was not pleasant for me either. I felt terrible and I had to sit on a hard chair and keep my mind on the task at hand. I played stupid games on my cell phone and tried to keep my mind on nothing but my Pook. We were only there for 4 hours. They got us in, through the images and out quite quickly. I can't complain. I will complain about the neurosurgery team that never even came down to talk to us. I will complain about the doctors who don't listen to the patients.

I got through it and was rewarded with a colon friendly dinner when I got home. My poor little one went to bed.

L.B. came home at lunch time. His pain is big today and he just couldn't stay at school. He is planning to try again tomorrow. I hope he is feeling better soon.

I had a bad case of the munchies tonight. I think it was the pred (but it could also have been stress because I am waiting for final marks to come in and with all the illness in this house the air can be a bit thick). It happens every couple of days. I just want to put food in my mouth and chew. I ate a wack of m & m's. Then I didn't feel so well. I tried to make myself feel better by eating some apple sauce. I don't feel quite as guilty but my stomach is too full and I know that was really not a smart thing to do. I was eating for comfort. I was eating to try to feel better and make some stress go away. Emotional eating. I don't think that goes well with UC. I need to find something that I can eat at these moments that won't hurt me or make me feel bad. Any ideas welcome.

My goal tonight is to sleep well so that I can be productive tomorrow. There are a few things that I would like to do. I have an important call to take and some research to do. Maybe I should do some wii fit to work off the m & m's and some stress.

And now I take 10

2009-04-21T09:59:00.004-04:00

Bathroom: 2 (urgency, first was not very productive but second was. Formed fm with mucus and some d, lots of cramping, discomfort but glad to let it go!)

On the Scale: 128! Good one. I am putting on a little weight.

Happy Days! I am down to 10 prednisone today. That's 50 mgs. Hooray! Gotta celebrate. I am waiting for the side effects to go away and hoping that I stay in remission at the same time. Fingers crossed.

I seem to have forgotten to take my Ativan last night. I actually felt tired at 1:00 a.m. and just turned off the light and went to sleep. Problem was that I woke up really early, before 6:00 a.m. and couldn't get back to sleep. I have to remember to take the pill. I need more sleep than that.

Once I was awake I was back to my overactive state that I have been in the last few days. I got up, made muffins for the family, emptied the dishwasher and otherwise cleaned the kitchen, cleaned some fruit for everyone, and then started to organize my day. I couldn't stop. I did finally sit to count out my meds and realized that I had considerable discomfort in my colon zone. Time to stop. Why do I have so much trouble with that? I ate one muffin and a handful of blueberries and strawberries. I needed fruit.

I am very crampy now. It leaves me wondering what I should be doing. Should I increase my fibre even more now? It seems that my colon is trying to make and keep things moving which is great so I want to put the best things in there to keep things moving. I don't seem to have had any negative effects to the sunflower seeds, spinach, avocado, or sweet potato that I added this week. I only add one thing at a time and I haven't actually been building on these things. I have my basic foods and then add one thing. Obviously, after my berries this morning, I will be on the careful plan the rest of the day.

L.B. has gone to school today. He was hurting but really wanted to go. He doesn't want to get behind and he just can't stand to stay in bed all day. It was driving him crazy. John has gone in to the office this morning. I have a little quiet time while Pook is sleeping. She has not been well so I am not so sure what to expect when she gets up today. We may go to see the doctors about her. She deserves some answers, poor kid. Maybe she will be feeling better.

End of day

2009-04-20T23:24:00.004-04:00

Bathroom: lots of urgency tonight. I have been 2 more times. some mucus. gotta go again.

I am just going to note how I am feeling just in terms of UC and prednisone. I have been neglecting keeping this record and I think I really suck at remembering one day from the next without an aid.

Very rumbly since my exam. I can feel things moving around. I had pain when I went to the bathroom right before the exam and some blood and mucus but it was very small amount. Since then, formed stool with bits and mucus.

My joints are aching. My ankles are the worst. My hips and shins hurt, my upper back between my shoulders and feet are also uncomfortable. Last night it got so bad I cried. I am hopeful that tonight will not get that bad. I will take my Ativan earlier (means soon). Indigestion continues to be a problem every time I eat.

My achne is worse, my face is fat and yes still hairy, my need to snack is ever increasing. I want to stuff my face every evening. Luckily all of the things that I want to eat are on my not allowed list. I am freakin' gorgeous!

Exam day

2009-04-20T17:59:00.003-04:00

Bathroom: 5 with urgency but mostly formed. One was mucus and blood but I am stressed from the exam and tired from working so hard over the weekend. I will rest this week I promise.

This morning Pook got up early and went over to hang out at my dad's for awhile. The boys went to their own spaces and left me be to do my last minute studying. I got a couple more hours in but I knew that it would never be enough with this topic. I did my best, packed up my stuff and then drove down to the invigilators office. I sat in a room full of computers, people all around, phones ringing, trying to squeeze information out of my head like water out of sponge in the desert. You can't get it out if it isn't in there to begin with. I am pretty sure that I passed. I did not score any amazing marks but I really wasn't trying to. This was a prerequisite course for my masters program that dragged on way tooooooo long. I just needed it to be finished. It was supposed to be a third year level psych course but it was actually more difficult than some of the fourth year courses that I have taken. I guessed on some of the 50 multiple choice questions - there are no deductions for incorrect answers. I stretched on a couple of essays, knew the answers to two of them well and drew a complete blank on one. For that one, I simply wrote I have no idea. I then wrote a new question and provided a complete answer for it. I just couldn't leave it all empty and blank like that. It probably won't make much difference in the final mark but it did make me feel better to do it.

It was difficult to write the exam. I cramped and felt like I needed to be in the bathroom most of the time. I was releived to get out of there without an accident just because I felt so bad (because I haven't been having much d lately and I haven't had an actuall accident to date). I was worried and stressed. I will be glad as I feel better and get further from this flare.

Pook isn't feeling too well and we may end up at the hospital for her tomorrow. All the more reason to rest well tonight.

Lovely Boy was convinced by us and a poor nights sleep that a day at home was warranted today. He is still recovering from surgery. He had a visit from his brother who can put a smile on his face like no one else can. They seem to do that for each other.

John worked from home part of the day just to be sure that everything worked out alright. He also had to take L.B. to get fitted for a cover for his cast so that he could bath himself in private.

John and I sat together for an hour and just relaxed and just as we were about to get up and get some dinner on, the doorbell went. We forgot about the painter coming. He was here for over an hour. He checked out all the work that was needed, is going to do it all, came up with an estimate and a date to be here. Things are moving on.

I at chicken! Yes really! with some pasta, a little spinach and broth, cheese and gravy. I also ate a couple of pieces of potato. This was all left over in the fridge. I will have to roast a chicken now. It is time.

Oh yes, I also got a mark back. That final paper I wrote for my masters course has been marked. I am pleased. I did much better than I expected 91%. I don't think I can get an A+ out of this one. The A+ plus is likely about 1.5 marks out of my reach. I am waiting now for one more mark. It is for participation on the forum. I am a very strong A student and I am happy with that. This is a good place to start. And I am even happier to have accomplished this while I was so sick.

I am resting now. We all are. Don't know what tomorrow will bring. Have to take advantage of the moments whenever and however they come.

Snails pace

2009-04-19T17:39:00.002-04:00

Bathroom: I seem to be going 4 times a day approximately. Mostly formed stool with some mess and constant feelings of urgency all day long. I feel like I could go sit and crap all the time. I just can't . It doesn't really work. It's just a feeling. I am glad that I am going.
On the Scale: 128!

Yesterday was very busy. Lovely Boy came home from day surgery and all reports were good. He was silly as he came to, he settled in at home on the couch and was able to eat something. His pain started to get bad later in the day and we got the T3's in him a little earlier than expected and with some gravol to help his sleep, we got him through the first night.

I had to take my car in to have the tires changed. I made the appointment some time ago thinking I would be well enough to do it or that I would get Lovely boy to take it for me! Oh well, I went, I also walked across the street and picked up my meds while I was at it and was happy to find that my new script for ativan is 1 mg rather than .5 mg. Hooray. I may start to do some serious sleeping and it doesn't have to go under my tongue, I can just pop this one back. The meds weren't ready and that sucked because they had to look all over to find my big boxes of enemas which should not have been hard to find. I didn't really have the strength to stand there waiting but there wasn't much I could do. I was at their mercy. I leaned on my cart. I stared at them. They met my gaze from time to time as they hurried around. I am not sure what they were doing. What could have taken so long?

The process seems easy.
1. Locate the enemas - check lable carefully
2. count the enemas
3. Check the number of enemas required for the prescription
4. Place correct number of enemas in box
5. print lable
6. have other pharamcist count enemas and check lables

There was much running around and computer screen checking. I strill don't get it. When they did bring it out to me, they appologized for the wait and wanted to confirm that they had given me the correct amount - I said yes of course - but I had no idea...I don't have the prescription anymore, they do! She then decided that the bag was too full so she went off in search of a box for me. I can hardly carry my purse right now I am so freakin' weak so I started trying to get her attention. When she returend with the box I asked her to please not use it. Instead I suggested that she divide the enemas into two bags so that I can carry half in each hand. She looked at me blankly for a moment. Then she looked at me as if she thought I was trying to make her life misserable. I think it was really at that moment that my idea made sense and she was pained that she hadn't thought of it. I do not look strong. I do not look fit. I just spent 20 minutes waiting for the meds draped over my bloody shopping cart.

I got my meds.

I also picked up a multi vitamin since I have not been eating a lot of different things and may be lacking in some other vitamins. I also got some sweet potatoes and treats for the kids.

I dragged myself back to the car dealer and was so pleased to see that my car was outside and ready that I didn't care that no one noticed me and I had to beg for service to pay and get things going. People don't look at you when you look sick and/or like you really need help. Have you ever noticed that?

I got home very tired. I still made potato fries. I needed them. I also cooked spinach. I needed that too. And we all ate a pretty good dinner with the rest of the gang having porkchops while I ate a bunch more of my chicken and gravy.

I spent the evening in bed. We looked at some real estate options. We did go to the drug store for Lovely Boy and we picked up a treat at DQ for Pook. We have to keep these kids smiling.

Today we all had our first barbeque. John had made burgers for everyone so I just mixed up some patties for me with extra lean meat, egg, bread, garlic and onion pouder. I put some avocado on my burger and that made me smile. I finished my sweet potatoes fries too. Everyone else had salad (Lucky!) but I was good and stayed away.

Time to study for tomorrow's exam. Then I will change gears. Time to get my Pook well now that I am on the mend and Lovely boy has had his surgery.

Them Bones

2009-04-18T08:29:00.004-04:00

Bathroom: 0 (back to my usual pattern of feeling like I gotta go and producing nothing)

Lovely Boy is having surgery this morning. His ankle was examined and ex-rayed yesterday and they found it to be in much worse shape than originally assessed. He will be pinned today and re-casted and hopefully he will be on the road to recovery. Poor boy. His pain had been getting worse as the days went by and it just didn't make sense. As step-mommy dearest, I wait at home for some news. He has both his mom and dad with him and they are wonderful people. The hospital is great and I know he is in good hands. Just wish I could hug him.

I am studying today. My exam in cog psych is on Monday. It is the final requirement for the prerequisite I was supposed to complete in December before I started the masters program. It has been a monkey on my back and I will be glad to finish it. I have learned some things from it though and I am actually glad that I chose it and worked my way through it. Some of the content will likely help me in my future studies. It already has actually in the m.p.

I am crampy and gurgly this morning. Uncomfortable but not in terrible-I-don't-ever-want-to-move-again sort of pain so that is good. John poured me a shot before he left for the hospital but I think my colon is immune to the effects of coffee. It is still sleeping. I ate some apple sauce and am having some tea as I get geared up to think. I would really like to move something. I just told my colon that. A little gentle friendly reminder of what it is there to do. Perhaps some mediatation and visualization of the fm slowly being squeezed through the lengths of recently healed colon would help. The power of the mind is amazing. Wish me luck.

My other goal for now is to get Pook through a couple more days where she doesn't want to kill anyone, doesn't get sicker and doesn't let her head explode. She is walking a fine line. She is hanging on by her fingernails but we can't get the doctors to do anything until she actually loses her grip. I have to be ready to catch her at any moment.

Coming down

2009-04-17T18:03:00.003-04:00

Bathroom: 2 (mostly enema from last night with a tiny bit of fm)

I am sort of coming down off yesterdays high. I mean that in many ways. I was so stoned last night after getting the double dose of meds that I really felt no pain. I am beginning to feel a little discomfort again. The drugs are really wearing off.

I am also not quite so excited about my remission. I am happy, don't get me wrong, but I don't feel different and I know that I have some more work to do to really be well. I am so weak and tired and I have so many stupid pred side effects to get over as I taper off. I plotted it on a calendar. If I follow the directions I have been given I will finish the prednisone on the last day of May.

In the meantime, my joints still ache, I feel like I have to go but I can't, I want to snack but I can't eat anything (stupid munchies) and nothing tastes right anyways, I'm bored, my face is fat and hairy, I can't sleep, I want my life back... I guess I am kind of miserable.

Damn. Some way to be on Friday night. I will get over it.

Happy thoughts... John is coming home, I am getting better, Pook is hanging out with me, Lovely Boy will get his ankle fixed tomorrow, I want to eat chocolate and I have some that I can eat, it is the weekend and that is enough for now.

For dinner I made a chicken, pasta, spinach and cheese caserole. It was bland but it had vegetable in it so it was fan freakin tastic.

Eleven

2009-04-17T07:45:00.003-04:00

Bathroom: just the enema

Eleven. That is how many prednisone I took this morning. Hooray! The countdown begins. I am so happy to be starting this taper.

I am a little sensitive. On the report that the doctor completed he indicated that I could go back to work today. I keep revisiting this in my mind. I am taking this as a judgment by the doctor rather than what it probably is (simply a statement that my colon is better). I know I am too weak, in too much pain and stress to go back to work. I will just have to go to my family doctor and discuss a plan to get me back to work that considers the whole person and not just my evil colon. I will also work on my cognitive scripts and convince myself that no one is judging me and it is okay to take the time that I need to be well.

The week got away from me. I can't believe it is already Friday. I have studying to do for my exam and I am way behind schedule. I will have to cram over the weekend. So much to learn and so little time.

I just had my regular breakfast of juice, tea and ensure. I don't feel hungry but I suspect that I will get a raging case of the munchies later (like I did last night). I think that is from the pred.

So far on the forum I belong to, I have had a few people suggest some foods to start with as I begin to add to my diet. I was so excited when one member suggested avocado! I loves those. I also was told that cooked carrots and peas, sweet potatoe fries, and spinach.

Another done

2009-04-16T15:38:00.003-04:00

Bathroom: Doesn't count - I did two fleet enemas and seem to have cleared a great deal of fm.

My dad and second mom came to pick me up right on time. We arrived to my appointment 15 minutes early and they were running an hour behind.

I chose sedation because I had enough pain just from the enemas. Why feel worse when I don't have. So, we got me all ready (I don't need instruction anymore, I know the drill). The nurse had me sign my papers and then started my I.V. Dr came in and after we talked he felt he would see improvement. I agree but it is good to check. I started to put in the drugs but nothing happened. My IV was a bust. He started another on the other arm and gave me more drugs. Those ones worked right away. I rolled over, slept, woke at one painful point, and then snoozed again briefly. I think the scope was quick. I should be pretty groggy all day since I got the stuff in my blood and the stuff that went into the tissue and will be slowly metabolized throughout the rest of the day.

The good news is that he thinks I am heading into remission and I may now start to ween off the Pred! One pill less every 4 days. I continue with the enemas and go back to check in at the end of April.

Hooray! I am also allowed to start adding more things into my diet. Just need to remember to do one thing at a time so that I can figure out what works and what doesn't. Oh the things I want to eat!

I just had some chicken and potatoes and tea and gingerale. Time for some rest now. I am totally drugged.

I love good news!

Step one

2009-04-16T10:57:00.002-04:00

Bathroom: 2 (small deposits of fecal matter that were hardly worth the rush and effort and mess except that it is so good to get anything out at this point and that's enough said)

I got up early with John this morning. He needed to wake up for a flight so my alarm went off at 5 a.m. I went down stairs with him and waited for the taxi. At 8:30 I felt tired and actually closed my eyes and dozed for about 45 minutes. I didn't actually fall asleep but I was close and I do feel a little better.

Pook got up and got herself packed up and organized. She is spending the day with my mom. They picked her up at 10:30. She is glad to spend the day with them but I could tell she didn't feel too well. She has been having a difficult week and it showed this morning. She needed more sleep. She will likely be wiped out at the end of the day. I hope she has a good one.

And that got me to step one. I did my first fleet enema. I know the last time I did one of these was when I was pregnant 14 years ago and about to go for my first colonoscopy. That was when I was diagnosed with proctitis. So I opened the box, lay on the bathroom floor and did the deed. I am glad to be getting cleaned out. I have felt so uncomfortably full for the last few weeks. My rectum hurts though. Ouch. I am not looking forward to the next one.

Urgency

2009-04-16T06:34:00.002-04:00

Bathroom: 1 (enema)

All day yesterday I felt the need to go. Sometimes I did. It was messy but nearly formed and a little bit would be expelled and I would be left wishing I could just do the whole job and move on. Every time I stood up, it got worse.

Seems this feeling is to continue this morning. What my evil little colon doesn't realize is that I am going to win this round. In just a couple of short hours, I will insert that fleet enema, cause some major urgency and then maybe experience a few short hours of relief.

I am a little bit anxious this morning. John had to go out of town today. My mom is picking up Pook for the day and my dad is taking me to the aliens for the probing. I am sure it will all go well. I am thinking positive thoughts and hoping for some good news.

Thinking about what I will let myself eat when I get home as a prize... not sure. There isn't much that I can put on the list. I might just have bread with sunbutter. That stuff is pretty yummy and with tea it might be just comforting enough.

Negotiation

2009-04-15T17:04:00.003-04:00

Bathroom: 4 (urgency, cramping, pain in upper left, fm and d)

I feel like I have to go all the time. I have pain in my rectum as well.

They called back and agreed that I could go ahead and do a prep but it had to be a mild one. I will do a fleet enema tomorrow before the procedure and fast for 4 hours.

That should make us all happy.

She paused before answering

2009-04-15T08:26:00.002-04:00

Bathroom: 0 (pressure, pain, cramping, but nothing)

Spoke to John at breakfast about doing a little prep for my colonoscopy. He sat with his forehead resting on his hand. Don't think that means anything. He always does that. He has strange body language. Sometimes that means he is thinking about what you said but most of the time it means he is tired, has a headache, is thinking about his morning, is pondering the weather, or just doesn't want to be engaged in conversation and this is a most excellent way to get people to leave him alone. When he does not answer me, I just move on. Sometimes I get angry inside, but most of the time I just ignore it. After I announced my plan to take the one packet of picko to prepare he didn't say a word. I moved on. 5 minutes later he said, "I am pondering the wisdom of that decision". I was well behaved. Not only did I not remind him of the many times he has said things like "I would just do it (when I was blocked up a couple of weeks ago) and clear things out" or "I'm sure it wouldn't hurt to just eat this". I also considered his words thoughtfully and came up with a solution. I suggested I would call the doctor's office and let them decide.

So I called the office. The receptionist sounded like she had not had a good nights sleep. I was my usual "I am going to be so sweet you won't be able to be anything but friendly with me" self. I don't like talking on the phone, I don't even like ordering pizza, and I don't like calling to ask people things. It takes energy to get myself worked up and ready to do it. Because of this, I am especially gracious in order to make the best of it. I explained that I felt so full, that I couldn't imagine how he would be able to see what he needs to see and that I really would like to do at least a partial cleaning before my proceedure. She paused.

I could hear her thoughts:
"This crazy bitch wants to do the cleans?"
"What is with these crazy colon patients?"
"You just can't win with these people, either they complain about the cleaning out or they make a special request?"

When I joked she didn't laugh. I said I felt the need to present a clean colon. She said that she thought he didn't want me to irritate things further. I said I understood but I was concerned by the fact that I can't pass anything. She agreed to check with him and get back to me.

So now I guess I just wait. I will rest my forehead on my hand and think whatever thoughts I want about the weather, the lack of jello in this house and how she paused before answering.

Maybe not the best decision

2009-04-15T00:36:00.003-04:00

Bathroom: 1 (lots of urgency, pain in the rectum, cramps, pain upper left, yadda yadda yadda, what I did pass was fm with a little d.)

We were all a little under the weather. Lovely boy fell on his way home from school (hard to do the crutches over the curbs) and was feeling really tired and lots of pain. Pook was doing her best to try to take some burden off the rest of us but in the meantime was doing too much and feeling very unwell. I made dinner and then barely had enough left to get the kitchen cleaned and get back to bed, draw in Pook to get her talking and keep her from isolating so that I could really see how she was doing. John got home from a full day at work to find the gaggle of us just about at the ends of our ropes. Luckily, he had been home for lunch and he and I had talked, saw the writing on the wall and developed the beginnings of a plan.

While I spent quiet time with Pook, John took Lovely boy to DQ and they picked up a friend of his on the way to come back and hang out. I did eat most of a smal DQ blizzard. I have not felt great since but damn it was good and I can surely use the calories! The treat picked up everyone's spirits and Pook smiled and chatted, Lovely boy hugged us before he slept and John and smiled while he did laundry.

I have this terrible full feeling. It happens lately when I eat and it stimulates what poop there is in my colon but it can't come out. It seems to just sit along the top, stopped at the left upper corner. If it makes it past the corner, it finds a couple more obstacles that hold it back, the last nearly impenetrable one being my actual rectum. Nearly nothing gets past that strong hold. Damn inflamation.

So now I am facing another colonoscopy knowing that I am full of poop and yet they have told me only to fast for four hours. I don't think so. I am going on liquids tomorrow and I may do half of a prep. I need some movement. I can't go through this and then have poop get in the way. Maybe I would feel better if I had a little emptiness inside. I think I will call them in the morning and tell them that I really feel like I need a little emptying. Hopefully they won't mind that. It might also make me feel a little less guilty for tonights icecream cheat.

Colonoscopy confirmation

2009-04-14T16:38:00.003-04:00

Bathroom: 2 (mostly enema with a little fm mixed in and some d)

The office called and I have been confirmed for another colonoscopy on Thursday. That's three. Since the second week of March. Am I a lucky girl or what? *smiles* As soon as they tell me that they are going to do this, I start to doubt that I need it. Maybe I am lots better and I just don't realize it, or maybe I just have no freakin' idea of what normal is supposed to be like so how can I figure it out? I just don't want to take up his time to find out they didn't need to but I am really tired of feeling sick. I would like to be able to eat, process and expel waste. That doesn't seem like too much to ask for. Right now I am having trouble with some of all of this.

The truth is that I just want to feel better so it is best that I go ahead and have this done. I have to make a few extra plans this time. John is going to be in Toronto on Thursday and he can not cancel so my mom is going to pick up Pook on Thursday morning, my dad will pick me up and take me to the appointment and lovely boy will go stay with his mother for a couple of days. When my mom brings Pook back they will check in with me and I am sure I will be fine. I don't have to do a full prep. I only have to fast, no cleansing. They will do a very fast scope and they won't go all the way to the end. The trouble seems to be in the top left corner and down the left side and at the rectum. I just can't pass things and I still have pain in those areas after all these weeks on pred.

I hope I will be able to start weening off pred. That is my biggest hope. I also want a plan. There are lots of things around here that need doing and I need to know what and when I get back to some of it.

I had another piece of white bread with sunflower seed butter. It actually is good! I haven't eaten anything else since this morning other than tea and juice.

Pook and I just went down and put the chickens in the oven. I am more comfortable when there is fresh roast chicken in the fridge that I can eat at any time. I am roasting two at the same time. I won't run out this time.

Excitement bites me

2009-04-14T08:42:00.003-04:00

Bathroom: 0 (urgency, grumbling, cramping but nothing more)
On the scale: don't know, forgot to step on it

The beginning of another week. I am settled back into bed now with my text book, note book, pad of paper for list making (for all of the many things that I intend to accomplish this week) and my tea. I want to do two chapters each day so that I can take the exam next week with limited anxiety. I am not a great exam writer so I always get a little upset but really, I have to work on my cognitive functions here and remind myself that I can do well, that I don't need an A+ and that my goal is to get a decent grade on this prerequisite course that I should have finished in December 2008! I have a 94 in the course right now. I am just a little worried about needing bathroom time etc during the exam. I haven't had to deal with that sort of thing so far.

I ate my usual handful of pills with my glass of juice, bottle of ensure and I had the most amazing cap this morning. The beans we roasted on Friday are absolutely perfect today. So freakin fresh it is awesome. I know many people give up coffee when they UC and I did for the first month but since I seem to be suffering from the inability to pass much of anything at this point rather than dealing with running to expel d. I figure a morning ritual of stimulating the colon won't hurt (until it does and then I will stop).

The rest of the day, I'm not sure. I think Pook's teacher will come today. She probably won't do much else since she did so much over the weekend. She was teary and tired last night.

I will roast a chicken again today. I have run out of fresh cooked chicken in my fridge. I also need to make some jello but I forgot to buy some. John said he would get me some today.

Oh the excitment of my life! Some times it jumps up and bites me.

another weekend complete

2009-04-13T23:57:00.005-04:00

Bathroom: 3 (I have done it all today. I had loose stool earlier with mucus and blood, I let go of some fm with lots of pain and cramping and just now after feeling a urgency and pain around my rectum I expelled 3 well formed bm's that looked like slightly large kidney beans with a side of d.) I can only thank my monthly cycle for making things move along as it has today. Fingers crossed that things will continue.

We did go ahead today and do the groceries and then John made a fantastic roast beast. I wasn't able to keep up all the way back to the car but it was good to get out, get a little exercise and have some input in what was coming back into the house. I didn't have enough energy left to help put food away but after a rest I was able to make gravy to go with dinner.

I have been thinking alot about work today. Wondering really when I will be able to go back. I am not financially independent, however, I am at a place in my life that if I need to take more time, it can be managed. There is a lot going on in life right now and if going back to work too soon would be putting me at risk, I am likely not to rush back. I want to go back when the time is right but I don't want to end up going back, having it be too much, taking more time, etc. This has all come up because I still don't feel well, I have no energy and I have another appointment this week to see what is going on. I want to be well. I want my life back. I want to put on a dress, my red shoes and go dancing!

Newest pred side effect to make life a little more interesting? Well, since moon shaped, hairy scaley faces aren't enough, lets just ad some acne, ok? And while I am pretty much not hungry at all most of the day, right after dinner, I get a sugar craving. The only thing that helps me with this is that nothing tastes right, especially chocolate.

Time to read or something. Take some lorazepam and go to sleep.

Monday morning

2009-04-13T10:43:00.002-04:00

Bathroom: 0 (gas, pain in left upper abs, urgency)
On the scale: 124

I slept in. I slept until 9! I got up, took my meds and then went back to bed while we waited for the espresso machine to heat up. And guess what? I fell back to sleep! Holy Crap! What a fantastic way to start the day. I have now had my ensure, my juice, my meds and a capucino and life is good.

Pain be damned. I ignore you. I damn you.

It looks like spring out there today. Gotta' check the temperature but I am told it will be a nice day. I do plan to go along for the ride to the grocery store. I am trying to move my body a little bit each day. That way I can even pick out my chicken and jello! Lucky me.

It is also time to start studying for my exam. I write it next Monday. I have completed everything else for this semester and it feels good. When the exam is finished, I will have a week before the new semester starts and things get busy again. That means, rest now, be prepared, and take good care of myself.

We are also going to start the necessary steps this week to getting this house ready to put on the market. We will call the agent, get a handy man in here to do some repairs and painting and pack up some of the clutter. Lots to do.

I think it is time to play guitar.

The day went on

2009-04-12T21:48:00.002-04:00

Bathroom: 4 (blood, mucus, fm, urgency, cramping, pain in back and abdomen)

Spent most of the day lying in bed because I just didn't feel well enough to do anything else. I made some necklaces and watched a movie, played on my computer and finished a book.

Bathroom trips haven't been too enjoyable. When I first went, I thought, Oh maybe I won't need to have another scope next week after all, but then I saw I was bleeding a little again and realized that another probe is in my future, like it or not. It would be fair to say that I am disappointed and a little sad. The good thing of course remains that we will really have an idea of what is going on and maybe that will help the doctor come up with the next part of the plan. I want a new plan that involves less prednisone. I think things will again be improved. Just not sure by how much.

We went out to my mom's for dinner. She made me chicken and rice and potatoes! Everyone else also had beens, peppers, and ham. I appreciated the effort and the special food for me to eat and the not having to do anything. I parked myself on the couch with a pillow, we ate and then we came home because I was done. We had a nice visit and it was good to be out of the house.

When we got home, John hung out with Lovely boy for awhile. He was lonely and still in a lot of pain. I came to bed and Pook went to her room as well. She is wiped from a busy weekend but she has kept her spirits up.

Easter

2009-04-11T17:39:00.000-04:00

Bathroom: 1 (tiny, fm, blood, mucus - pain on left side, lower back, gurgling, cramping)
On the scale: 124

Another better night after ativan put me to sleep. I don't like the feeling of falling asleep when I take it. I occasionally feel like I have stopped breathing and then jump back to my senses in a panic. When that goes away, I start to fall asleep again. But once I am asleep, I stay asleep longer and feel better in the morning. I woke up at 8:30 this morning.

Not feeling so good today. I probably did too much yesterday. I am cramping, have pain in my lower back and left abdomen and noticed a little blood in my one and only bathroom experience today. It could be from the activity, the stress of having all the extra people in the house or because I added to my diet. Hard to say. I will be doing my best to take it easy, no chores today, no outings except to go sit on my mom's couch for dinner and then no friends here tonight.

Pook's friend is still here so it will be interesting to see what sort of shape she is in this afternoon. She better keep her act together! If you have the fun, your not allowed to take it out on the family after.

I haven't eaten any solids so far today. I had a cap (with the freshly roasted beans - beyond delicious) orance juice and an ensure. Not hungry today. Maybe later.

Getting through a busy day

2009-04-11T17:22:00.002-04:00

Bathroom: 2 (some fm, nearly formed, urgency and cramping)

I have been busy today. There was so much we needed to do and John could not do it all on his own. I got up with Lovely boy and we had breakfast and then got him settled in the livingroom. I sat with hime for an hour and then showered and took Pook out to get birthday presents for her friend (who is over for the night tonight). While we were out I also went to the health food store and got some sunflower seed butter, apples sauce and organic sunflower seeds. And just to tempt fate, just before we left Chaptes, I got myself a grande nonfat latte. It had been soooooo long.

We got home just as the boys were getting in from picking up the paycheque, talking to the boss and picking up the medications. He was done.

Since then we have tried to rest but the door has been constantly opening and closing with visitors. Pook's friend arrived and they hung out with Lovely boy and his friends for awhile, playing wii and joking around. It was really cool that they all hung out together. John and I also had company when Dr. W. came by and we had caps and chatted. He came to check in on all of us but it was nice to have an adult visitor so John and I claimed him as our own. Now we have all split up. Pook and her friend are hanging in the bedroom, I am resting and the older guys have the livingroom. John has gone out to pick up a pan of lasagna so we can feed all of these kids.

I am trying to take it easy because I am feeling lower back pain and crampy again. It seems that as soon I get my colon to start expelling any wast, it comes with urgency and pain. I was sort of thinking that if I started going maybe I wouldn't need another colonoscopy this week but John said, "Oh your getting scoped". He wants to be sure they know what is going on and if things look good I am so hopeful they will start to taper my pred.

Now, my next task for today is smelling and looking at lasagna and not eating any. Damn.

Ativan is better

2009-04-11T09:27:00.003-04:00

Bathroom: 0 -couldn't move a thing this morning
On the scale: 123.5

I slept. My GI suggested that I give up on the traz and try ativan for sleep. He called in a script but it just so happens that I had some in my purse for the moments when anxiety proves to overwhelm due to environmental factors such as stalkers, meetings with angry people or temporarly misplaced files. Anyways, I took an ativan around midnight, fell asleep quickly and didn't wake until lovely boy came by looking for T3's at 6:30. Even more amazing, after he was tended to, I went back to sleep for 2 hours! I have not been able to do that since I started Prednisone over a month ago.

I at toast and apple sauce for breakfast! Hooray. This is a new addition to my terribly limited diet.

Lovely boy has a broken ankle. Looks like two broken bones actually in his left ankle. No driving for at least 2 weeks, has to sit around all weekend, keep his leg elevated and get lots of rest. The poor boy doesn't seem to be enjoying his T3's. They keep coming back up. As if he didn't feel bad enough. He has to go see a surgeon on Friday to check if it will need a pin. For now he is feeling bad that he has to ask for so much help. We will have to get him some games and try to keep him company. He is usually very social and active.

My stomach is gurgling. I am hoping for good things today. I am planning to take Lindsay out to pick up her friend. I haven't attempted anything like that it quite awhile but with two kids needing things today, I feelt he need to try to be helpful and to contribute. I will rest the remainder of the day. I will be a good girl and eat my gruel later.

What a day

2009-04-10T20:43:00.002-04:00

Bathroom: 1 (small fm and mucus, messy)

So I ate pasta and chicken for lunch after getting the green light from the doctor. It was good. I rested for awhile and then John and I went to the kitchen to roast some coffee. We have been out for awhile. I really wanted to roast and have a fresh shot for my cap over the weekend.

While we were roasting, we ordered more green beans, sent an email to the real estate agent and then got a call from my dad. He is home from his wintering in the south and wanted to drop by. So much activity was keeping me from even thinking about how I was feeling. They came over, had coffee, checked in on all of us and then ventured back into the sunny afternoon.

We were just about to clean up and take a rest when the phone rang again. Not good news. Lovely boy had an accident playing football and the ambulance was on the way. We jumped in the car and headed over to the park. He was lying on the field and the ambulance was there but they couldn't move him until the drugs started to help the pain. John left with the ambulance and I came back home to wait with Pook. They just called and are on the way home. His ankle is broken and he has a cast from toes to knee.

On good Friday

2009-04-10T11:33:00.002-04:00

Bathroom: 1 (tiny mucus and fm)

Doctor just called to check in. I was surprised to hear from him on Good Friday. Pretty cool. He is going to call in a script for me to pick up tomorrow so that I can get a little more sleep. He also wants to have another look inside since I am not easy to evaluate. He is hoping that things will be improving and that I can start to taper the prednisone. Oh that would be soooo good! So, it looks like I will have to go in for another scope near the end of the week and then we will be able to do a plan.

Really good news is that he suggests some toast and pasta and even agreed to Apple sauce! What a big day this will be. I am so happy to eat fruit. Even the apple sauce kind. I am about ready to rip the cupboards apart to see if I can find any in the house but I don't think there is any here. I want tea and toast with apple sauce.

Really early start

2009-04-10T07:35:00.002-04:00

Bathroom: 1 (tiny little ball of mucus and fm)

Woke at 5 a.m. when John started some martial arts moves on me in his sleep. He came at me fighting! His knees were moving particularly quickly and made perfect contact with my left knee right below the cap activating my reflex. I have been feeling like kicking ever since! As you have probably guessed, he went back to sleep after ensuring that I was ok. I on the other hand lay in bed with my eyes open for an hour before giving up and making tea. I have been sitting here playing stupid games on facebook ever since. I got up at 7 and made a second cup of tea. The CBC is playing gospel music which is adding to my sense of being in my own personal hell on this Good Friday morning. I am not religious. I can not understand love songs for god. The radio is on the other side of John and while I don't want to listen to anymore god songs, I don't want to sit in total silence either. I am making due.

No Relief

2009-04-09T23:20:00.003-04:00

Bathroom: 0

The evening has just continued as the rest of the day. I didn't feel any better or any worse, I didn't have any energy but I was bored beyond belief.

Pook had company and seemed to have a really good time. She was silly and laughing and then absolutely nasty (indirectly) after her visitor left. I am sure tomorrow will be fun with her.

Everyone enjoyed pizza for dinner. I had congee with an egg and it was good too.

My mother called and invited us to dinner on the weekend. I couldn't commit because of how I am feeling but I have agreed to consider dinner on Sunday. I will let her know closer to the day.

Tomorrow we plan to roast some coffee, do some laundry, make some music and just relax. Hoping it is good one.

No call

2009-04-09T15:18:00.003-04:00

Bathroom: 2 (small loose fm with mucus)
slight temp - 99.6

So the doctors office didn't call back. I was going to tell them that I was feeling very warm and did start to pass a little fm this afternoon. It would have been nice to hear back since we are starting on a long weekend but I guess I can just take this as no news being good news.

But I feel terrible. Yuck. I'm hot, crampy and my hips hurt.

And damn I am a whiny little baby sometimes.

I am beginning a good 'hate on' for prednisone as well. While I appreciate all the good things that it seems to be doing for my sick colon, I am not so damn pleased with all the other freakin' things it is doing. Every morning I find a new bunch of nasty hairs growing out of my face. My skin is nasty and scaly and I am quite sure that my face is becoming rounder by the day. In addition, my joints all hurt, I feel like the bones in my feet are going to break and while I am nauseated and uninterested in eating, I have started to crave food - I am not hungry, I just want to eat and the eating makes me more uncomfortable. AAAAAAAH! I am sure there are more things that are happening to me but I can't even concentrate long enough to list them.

I am bored.

I want to be well. I want my life back. I want to go out and dance and eat in a restaurant.

Called the doctor

2009-04-09T10:06:00.003-04:00

Bathroom: 0 (not a thing today)
On the scale: 124

I remembered this morning and called in my update to my fabulous GI. I left all the details with the lovely lady who answered the phone and now I wait for any additional instructions. It was good to be able to share all the details with someone who didn't receive them as crazy or complaining! I was able to make her laugh about how my feet felt like the bones were breaking and how all the nasty side effects from the prednisone were turning me into a man. She will get to me at some point today and maybe I will be allowed to add some baby food fruit or something to my poor diet. Fingers crossed. I need a new snack.

This morning I couldn't eat but I did drink an ensure, juice, tea and a shot of espresso. I was hoping the coffee would stimulate my colon into letting go of some wast. No luck but it did seem to make it act up a little so I will continue to have coffee in the morning unless I am told not to.

Not sure how I will spend my day today. There are lots of little projects that I could take on. Not sure if I will. I might start studying for my exam (that I have booked for April 20). I might not. I might just do nothing again but I know that I will be nuts by the end of the day if I do that. I think I might like to knit something. Maybe I should get some wool over the weekend (and some new beeds). Maybe a little research on probiotics. I signed up for the ensure website and I think that qualifies me for some nice coupons! I like coupons.

I started reading a book yesterday. I read half of it. When I am in the middle of a course I can not read anything for pleasure so it is one of my favourite things to do right after I finish a course. The book is called Madness. It is about a woman with Bipolar. This is personally and professionally relevant material to me but I am reading it for entertainment. I have a stack of books that fit this same bill. The next one I read is one that I got for Christmas about a teacher with Tourette syndrome.

Trying to be

2009-04-08T16:28:00.002-04:00

Bathroom: 1 (mucus, salofalk enema and blood - small)

I have had a strange sort of day so far. I haven't felt well but it has been different. I am crampy and uncomfortable, I keep overheating and getting sweaty, and I don't have any energy at all.

Just sitting up to do some beading was too much and I started to sweat. I am tired of lying here but I don't have any energy to do anything else.

I was hungry for a little while so I had an ensure and then half of a chocolate bar. I am thinking about my dinner already. I look forward to eating dinner. It is the time of day when I am least likely to feel nauseated and I eat something substantial and get to chew.

John's home. He got a coffee delivery today. I am going to have some tomorrow. I asked him to play a little game of lets irritate the colon into action but he just had a shot before he came home.

All stop

2009-04-08T10:10:00.002-04:00

Bathroom: 1 (mucus and blood, very small)
On the scale: 123

So, my system seems to have stopped up again. I am not going and the pressure is building. I have been drinking tea hoping it would stimulate some evacuation. I might try coffee later.

I just prepared a leave form for work. It sort of blows me away that I have been at home sick for so long. I have never missed this much work, or been sick for so long. I feel sort of detached from everything. Life is going on but I am sitting still.

I ate yogurt. Just now. I ate it so that I could say that I ate something. I wasn't hungry but I know I should put something in there. I am trying to increase my fluids today. I don't think I have been paying enough attention to my input the last week and since my weight has dropped a little again, it deserves some care. I asked John to kick my but if he sees me without a drink.

Pook is up early so she can be ready to go to my mom's. She is going to enjoy a little extra TLC and dinner out. I am happy that we have our lovely cleaning lady back this week. She couldn't come last week and I really noticed the difference in the house. She does such a good job and it makes me so happy!

I am taking the day off. From everything. I am not thinking, tidying, organizing or preparing. I am even having trouble typing.

A long day

2009-04-07T23:30:00.003-04:00

Bathroom: 0 (not that I didn't try but my colon refused to give it up)

I spent pretty much the entire day reading and writing. It was tiring and I have to admit that it was not the best that I have ever done but considering the situation, I am okay with the final product. Being sick makes academics difficult. I just have to do what I can. I sent it in at 10:00 p.m.. I had a couple of hours to spare but I could not look at it any more.

I roasted another chicken today as well. I was running low and having the chicken in the fridge really helps me to get something in everyday. Some days I could just not bother eating at all. I ate chicken and mashed potatoes with gravy for dinner and I heated up a little bit of spinach and ate that with a wee bit of lemon squeezed over it. Damn it was good. Hope I don't regret that tomorrow.

Pook did school today and then even finished and sent in some homework. She is still feeling really sensitive and tired. We are hoping for a better day for her tomorrow. She is going to spend the afternoon with my mom and stepdad. She will come home all tired but so happy from some nice spoiling. We are going to plan some fun for her on the weekend. The poor kid needs a life.

My pain has remained pretty bad today since nothing is moving. I am hoping things will get going again tomorrow. I think I was supposed to call in to the doctor today but I was so busy with the paper that I didn't do it. I will call tomorrow. I have to write down what I am going to say because I forget the important details when I get him on the phone.

Looking forward to tomorrow. I plan to relax. No work. Maybe I will read or have a bath. Maybe I will watch a movie or make some jewelry. I won't study. I won't work. The day will be mine.

The last day

2009-04-07T12:16:00.002-04:00

Bathroom: 1 (just enema and mucus so far this morning and nearly unbearable pain in my lower back)
On the scale: 124

Woke up bright and early at 7:00 a.m. after a glorious 4.5 hours of sleep. Wow. What a good one.

Went to the bathroom and didn't have to let any d go. I just sat there for awhile, pushed and produced a little enema and then got up to leave. I will have to wait a little longer I guess. Maybe I will go for a jog around the block to get everything moving! That sounds like fun.

It is snowing again this morning and in fact it is kind of cold. It doesn't seem like spring at all and the number of accidents reported on the radio this morning would attest to the unusual conditions. Drivers who just had their snow tires taken off did not have a good drive into work. I won't be going jogging after all.

I am writing again. No surprise. The paper goes in today. I am at the "stick in what is needed and get it out of here" phase. This is when I go a little beyond caring and just want it to go away. I have to keep myself from performing premature release of the paper. There is always time for one more edit. There is always one more typo to find. I really have to finish writing the damn thing.

I think I just dropped a piece of muffin in my purse. I have this muffin sitting here. It has been here since 9:00. I couldn't eat it. I felt terrible this morning and couldn't make myself put more than a couple of mouthfuls. I brought it and my tea and a yogurt upstairs in the hopes that my natural desire to snack would kick in after I sat here for awhile and I would be able to consume it. I have eaten more than half of the muffin and I ate the yogurt. I am really trying to eat more than one time each day even if I am nauseated.

The new teenager just came in to give me a little bit of grief. She did too much this weekend and has been all sensitive and difficult since. Today it is a clothing issue that we get to discuss. I am having a fun day so far.

Grrrrrrr.

Still writing

2009-04-06T21:08:00.003-04:00

Bathroom: 2 (diarrhea, mucus and lots of pain and urgency)

Despite the pain, I am thinking that things are improving. I am actually passing fm. The cramps in the left side bring tears to the eyes but I am sure this won't last. This has to be progress.

I went back to broth, chicken and rice tonight. I need to go easy. I am supposed to call the doctor tomorrow so I will find out if I can change the diet at all. I am hoping to add some spinach to my broth and some cooked fruit to my days (even baby food fruit). If not, no big deal. I have another chicken to roast tomorrow and I will love my broth because it doesn't hurt me as much.

Pook isn't having her best day. She seems to have worn herself out over the weekend. She is really sensitive.

John is enjoying some time in his new music studio that we put together yesterday. It is a good space with room to breath and move and much less reason for noise concerns.

That's enough chatting time for me. Time to get back to work. Lots to do and only a day left to do it.

Oops, Forgot to post!

2009-04-06T15:16:00.002-04:00

Bathroom: 2 (mucus and fm. Hooray. The exit continues.)

The first thing I saw this morning was snow. Yup. It was snowing and it kept coming down and actually hung around a little until about an hour ago when it switched to rain. Thank goodness for the rain.

I am feeling good enough today to actually carry on a conversation with someone and not rip their head off, to try eating more than once today, and to write a few words on the paper that is due tomorrow. I think things are looking up.

I am writing my paper. I have been adding all morning and I am making good progress. I will have to work pretty much right through now to get it done but that's ok. That's really the only way I can do these things. A special young woman that I know has located the final book that I need to reference and she is delivering it to me on her way home from work.

I ate a muffin this morning (most of it) and have had terrible heart burn ever since. I am just proud that I ate something this morning. I haven't been eating anything solid except for dinner.

Crazy thing. I am craving cheesies. The crunchy kind. I think it is the strong cheese flavour and the satisfying crunch. I am not hungry, I just want to chew again! I am always going on about chewing.

Chris has posted on his blog that he will be sharing pictures of his diseased colon. I can't wait to see them. I am so curious. He is so brave and it is awesome that he is sharing so much of this journey.

Later.

End of the day

2009-04-05T23:34:00.003-04:00

Bathroom: 2 more times! Yes more of the same. There is even a little pain relief involved now. I smiled again. Damn, I might even have laughed.

Along with my little movements, I seem to have passed a cup of stress and anxiety and I am in a much better place emotionally.

I am not tired. Still have that problem from pred. But don't have enough energy to actually do anything so I am sort of in limbo. I want to be quiet so that John can sleep. Probably means I should grab one of those articles off the pile that will help with paper tomorrow. Do some stupid reading and feel even better about myself.

And then it will be enema and sleep time.

Took what I wanted

2009-04-05T19:14:00.003-04:00

Bathroom: 2 ( yes really! 2 tiny little bms!!!!) Not enough to relieve the pain, just enough to give me hope. Things are finally starting to move. I think I actually smiled.

I took it easy today in terms of holding myself responsible for everyone and I pushed myself in ways that I wanted. I got the lovely boy working (I paid) and he moved many different things around the house for me, mostly from den to basement and he took apart old pieces of furniture that will go out in the trash. He worked hard even thought he felt sicker as the day went on due to his celebrations out with the guys last night. This has freed up some space and decluttered some of my world. John now has some space in the basement for music that will allow him to pump up the volume and get some time alone and away from everyone! Nothing like a little peace and solitude.

There is now room in the office to do some work. I can organize in there to my hearts content on Wednesday (post paper) and make sense of all the odds and ends, get pens together, the paper and do the caligraphy supplies some order.

I am so hopeful about tomorrow now. If things keep moving I might actually be able to think and create something brilliant just in the nick of time for my final paper.

I ate steak tonight. Not lots. Just a small portion. It was well cooked, no veg, no spice and I cut off all the fat. It was good to eat something that wasn't chicken. It better not get in the way!

Pook spent her afternoon out with her cousin doing some shopping with the birthday money. She seemed to pick up a little bit of everything and was pleased with her purchase. But man she was tired and cranky when she got home. She gave me that look. The one that teenage girls give their mothers. I called her on it and it quickly disapeared and she returned after a bried respite in her room filled with her usual good humour. She is tired.

We had company briefly today as well. Friends came over to visit for an hour. They were great. They came over had tea, chatted and distracted and then left an hour later. They didn't stay too long. They were excellent guests. They left and I went to bed. John took the lovely boy out and came home with groceries.

John is doing music things now. I am in the basement with him. I am not sure if this defeats the purpose of moving down here but I don't think he minds the company right now. I won't stay all evening.