Tuesday, March 31, 2009

Made alot of bad choices today

Bathroom: 1 (tiny mucus and salofalk ball) - lots of cramping and pain all day. I am so tired tonight.

I had a great dinner. Ate some chicken and potatoes from the other night. Ate too much and have been feeling crappy since but I was really enjoying the feeling of chewing and having food in my mouth. It was a sensory experience that I just couldn't give up. The heartburn alone could kill me.

Add the eating too much to the being up too much and that is just two too many not so good decisions. I will have to do better tomorrow.

I had a good evening though. Pook and I watched another episode of Dead Like Me and then I called my friend in another city and we had a good long chat. She is having difficult times too. It is good to listen to her troubles and share mine. Mutual support. I need it. It helps.

I did a little bit of reading and school work but I am behind schedule now. Time to buckle down and get it done so that I don't end up with extra stress.

I think I am developing sores in the corners of my mouth. First the right side hurt, now tonight it is tender on the left side as well. Not sure what this is. Maybe ulcers in my mouth? God. Did I mention how big the circles are under my eyes today? My skin is discoloured and scaly on my face and the hair... damn.

Ok, pitty party over.
Moving on.

Check

Bathroom: 1 (enema, mucus, and something dark coloured -fm or blood - I don't know) tiny

I got my hair cut. Hooray! Took off two inches and a bunch of dried nasty frizz. I sat for an hour, had my hair washed, enjoyed some light chit chat and felt pampered. It was good. I couldn't stay to get it styled. I was done after the hour. But I am not at all dissapointed. I am very happy.

I am very sore. I have definitely pushed past my comfort zone. I just sat at my dresser and straightened my unruly mop and that was just a little stupid. My back is aching and my gut is rumbling and cramping. I know. Not my brightest idea. Damn.

So I am back in bed with a tea and the remote control. I wanted to do some school work but I can't concentrate until I feel a little better.

I am thinking about Chris today. He had his surgery yesterday. I hope he is recovering well and standing at the beginning of new and incredible things. He chose a murderous end for his traitorous colon after fighting a long battle. This was his way to win the war. I think he has made a very good choice for his life.

Tuesday morning

Bathroom: 0 (just enema waste this morning) I feel like I want to go but I can't produce.

I had a good sleep! I took my pills, found something not to interesting on the tv and then John wrapped his arm around me and I was gone. I think I got a good 6 hours. Hooray!

That sleep will help me to get some things done today. It's easier to concentrate when your rested. I have two school things that I want to complete today. One is an interview, the other is a self evaluation. And, time willing, I need to do more reading for my final paper.

I am excited about my hair cut. I am going at 10. I admit I am a little anxious about going out and having to sit there and I suspect that I will not feel so great after but damn I will look a little better!

Monday, March 30, 2009

Hmmm

Bathroom: 2 (tiny but combo of loose fm, mucus and salofalk) This has to be seen as improvement! The not fun part is that it has been a day of pain of cramping. No pain, no gain I guess.

I spent almost the entire day in bed. I did some school work. I watched tv. I played on my computer. No big projects and no exertion. This was necessary. I did too much yesterday.

I did get up to eat dinner with the family. I had congee again while they all had homemade burgers. My congee was good but like most things, gave me terrible heartburn. Since dinner I am not sure what position to assume. I slouch down because of my cramping and then I sit up because of the bloating in my colon and the heartburn. AAAAAH! Decisions, decisions.

Pook hung out with me for awhile this evening. She brought in her DVD's of the first season of the show "Dead like me". What an awesome pilot! It was funny and morbid and original. I look forward to watching more of that with her.

I looked in the mirror tonight and I think I look older and I think my face is getting rounder. Crap. Need to remember to stay away from those stupid mirrors.

Last week


Bathroom: 1 ( lost what was left of last nights enema - salofalk with a b,m, and maybe fm - not sure)

So last week I had the second colonoscopy. This is how I looked as I recovered form the drugs. Isn't that a happy face? Ha! I didn't even know I could make a face like that.

Not quite committed

Bathroom: 0
On the Scale: 126

I was half expecting to go up a pound this morning after yesterdays food. I thought for sure the cake, ice cream and chicken with gravy would start me climbing! The good news is that I think that is about 4 days without losing another pound.

I had a hard time getting to sleep again. I took two sleeping pills and was still awake 2 hours later. It seems the best remedy for this, is to turn on the light, pick up some school work and read. So that is exactly what I did. I read a chapter out of one of the books I ordered from the library and by the end of it the words were swimming. I lay my head down one more time and soon found it was morning.

I made plans for today. They include staying in bed and working on my last paper for the semester. I got up and took my pills, made some tea and brought all my work to bed with me. It is all organized into piles and I have all the supplies that I may need. The only problem is, I don't feel like it. I don't want to read. I don't want to write. I don't want to work.

The boys have gone off this morning to have blood work done. They have familial high cholesterol and need to keep close tabs on the situation. They have numbers that would kill the rest of us. Hopefully, they get good results. They will be home to eat after the test, before work and school, since they had to fast since last night.

Pook is causing me a little concern. She was a little bit better over the weekend but not as good as I had hoped. She wasn't well yesterday and during our celebration started to show the signs of pain and discomfort. Her face changes, she can't pay attention, she becomes sensitive and her eyes look wonky. She cried last night after dinner when she admitted just how bad she was feeling. Our plan for her today is that she will sleep in and get up with just enough time to eat and dress before her teacher comes at 1:00. She is going to try to do a little school work and then she will rest again. She has promised that if this week starts to go like last week she will not ignore it. She will tell me and we will go off the hospital and demand surgery. We are tired of wait and watching her life go by. She is so strong. I am so proud.

Sunday, March 29, 2009

Time to try to sleep

Bathroom: 0 (no changes)

I really enjoyed my dinner tonight. I decided to roast a chicken and went to the trouble of brining it overnight, doing the gravy from scratch and it was really worth it. There isn't much that I can eat so it is really satisfying to make something that is allowed and tastes good. Not to say that I haven't been eating really yummy things, rather this was about preparing something myself and being able to feed my family. I have been relying on everyone so much that I just needed to feel like I was doing something for them.

I hurt. So tomorrow I will not try to do anything other than reading and writing. I will stay in my bed as directed. I have to make up for today.

I am going to take my pills now and hope to get some sleep tonight.

I will be thinking of Chris in the morning who is going in for his surgery.

Exhausticated

Bathroom: 0 (how shocking!)

So my family came and we had cake. It was a nice relaxed time and everyone pitched in and I did my best to sit and let things happen. My sister brought a delicious cake and we had some ice cream and John made espresso and it was just great.

After an hour I was toaste! My energy reserves are not what they used to be. But I was dressed, had put on my rings and even a little make up. I put in enough effort to make my mom think I was looking better. She smiled and said she thought I was turning the corner. Hooray! Her peace of mind improves my peace of mind.

I am back in bed. Time to rest.

Rainy morning

On the scale: 126 (holding my own)
Bathroom: 0 (I did pass some gass!)

I didn't fall asleep last night until after 3:30 a.m. I was hurting a lot and couldn't get comfortable. I finally fell asleep after John woke up to watch the Formula One race which was really good. I missed the last half hour but luckily he taped it so I watched it this morning. I woke up at 6:25 to pee and couldn't go back to sleep. I lay in bed waiting for my eyes to close once again as the sun slowly rose. At 7 I gave up and went down for some juice and then settled back in bed with an article for my paper. I read two articles, had some tea and then joined the boys downstairs while they ate. I had an ensure. It was all I could manage. I was too full and nauseated to even try to eat.

Today we will have some party time. I have decided to get dressed in real clothes and maybe even put on some make up to hide the mess of me. I wish I had the energy to straighten my hair but it is so long that I just can't manage it. John is going to make me a hair appointment for this week and drive me there and back. I think it will make me feel a little better.

John's son has also agreed to help me with a couple of things this week. Little projects that I would usually just do but can't presently like put away all the winter boots, hats and scarves etc. from the front hall. He is also going to take my desk apart and get rid of it. It is a mess and needs to go away. I am renting him for an hour tomorrow. I will feel better when some of these things are done. I need to cross things off my list to feel good. I have always been that way.

Saturday, March 28, 2009

Congee

Bathroom: 0 (zip, zero, zilch) The cramping continues, the pain continues and there is occasional rumbles and gurgles. I had one brief moment when I thought I felt urgency and then it was gone.

I have pains in my joints. My ankles, knees and left hip hurt. No sure if this is from all the lying around or what. It was an amazingly beautiful spring day and so I went out briefly. The longer I was up and about the worse the cramping got and the more pain I felt in abs and lower back. I am really uncomfortable under my ribs.

While I was in the shower today I could see tadpoles swimming around in my eyes. Obviously not real tadpoles, just shapes that looked like them.

I had a really good dinner. John called his mom and got the recipe for Congee. This is ground beef and rice with some mild spices that cooks for hours. It turns out like a porridge but it tastes really nice and is easy to digest. I actually ate two ladles full. Despite this, I am sad to report that I am unable to watch the good cooking and food shows that Iusually love.

We sat in the dark for an hour tonight for Earth hour. We were proud to participate.

Oh, yes, and I look like crap!

Hope is important

Bathroom: 0

I am struggling a little bit today with the idea that I am quite dependent on my loved ones right now. I see the strain on their faces. I see the worry in their eyes. I am not able to get up and help, lend a hand or be the motivator.

I am working very hard at maintaining a positive frame of mind. It seems important to me that I keep my chin up, don't succumb to the blues too often and focus on hopeful thoughts. I do my best to not complain, in fact I write here about my pain but I don't usually talk about it. I keep it to myself. I can't live in that space all the time. I have to ignore it, I have to occupy my mind with other things.

Saturday morning

Bathroom: 0 (just lost the enema, nothing else). cramping, full, bloated, pain, ugh

Slept in a little. I didn't wake up until 9:15. WOW. That first moment when I woke up was really great. I hadn't moved and I couldn't feel anything. No pain. It was a good moment.

Not sure what to do with myself today. I really need to go to the drug store and Baskin Robbins so that I am ready for birthday party things tomorrow. I also want to get an organizing for some of my things so that I can have the boys put my old desk out with the trash on Tuesday. Most of all, I would like to see a smile on John's face today. I would like to see him have some fun but there isn't much that I can do to make that happen. At least not yet.

I will do some school work. I will do some planning as we are supposed to be getting the house ready to sell as we prepare to move in August. I may get one of my cards done and mailed. I think I might also take another bath. Most of all, I want to get at least a few minutes outside. It is supposed to go up to 15 degrees this afternoon and that is such a warm treat for this time of year. I have to experience it.

Friday, March 27, 2009

Bathroom: 0 - no changes

I took out my pens tonight and practiced some caligraphy. I am rusty. I haven't been practicing. I wanted to practice a little before I put any words in to the new cards that I got today.

We tried to watch Ghost whisperer again tonight and we met with more disappointment. Grrr! Drives us nuts when it isn't on. We decided to watch a movie instead. We watched "the Lady in the Water". It was pretty good. Different. Interesting.

Feeling pretty tired. Hoping for a better day tomorrow.
Bathroom: 0 - very sore lower back, cramping and an occasional gurgle

My mom came over and helped with my laundry and made me some soup for lunch. My sister came over to eat her lunch with us. Pook is looking a little better today. She got up, dressed, went for a walk to post some mail, and then she helped my mom.

My friend dropped by as well and delivered the beautiful cards that she created for me.

I did carry some laundry up and down the stairs and I did too much. I stayed out of bed for a little too long. OUCH! So I am resting again and trying to relax.

Mornin'

Bathroom: 0 - absolutely nothing
On the Scale: 126

No changes in the way I feel. Nothing is moving.

Today, I am sticking as close to a liquid diet as possible. I don't have room to fit any more solids in. I will enjoy jello and Popsicles, ensure and broth, and if I become truly desperate to chew, I will pop a tablespoon of rice in my broth. I will be master of my colon!

I am set up to start on my last paper. I have brought a printer into my room and set it up beside my bed. I am printing out all the journal articles that I need to read. I know this may not be the most environmentally friendly method, but I can not get the same level of comprehension from my readings if I can't write in the margins. I guess I am a little stuck in the past.

My sister is coming to eat her lunch here today. I will watch her. She will make me laugh. She might even bring along a dvd or two for me to watch this weekend. Her company is putting a happy smile on my face.

Thursday, March 26, 2009

Acceptance

Bathroom: 0 - nothing. Bloating, cramping, squeezing pain continues. Couldn't I have a little middle ground?

Finished my weeks worth of readings today and posted on the forums. That leaves me clear to work on my last paper for this semester tomorrow. I have a lot of reading and writing to do and two weeks in which to do it. No worries. It will be good.

I ate rice tonight with a little bit of well cooked pork. Then I enjoyed a delicious orange Popsicle, a glass of water and 6 M&M's that tasted like crap (because that is one of the cool jokes being played on me at the moment since I am encouraged to eat chocolate). I am now sipping ginger ale. I love ginger ale.

John has gone out for the evening. There was a band playing and a few of his friends were going and he really deserved to have some fun. I am glad he went. I am glad he texted me from the show. I am glad he missed me!

Pook looks a little better tonight although she says she feels just as bad. It is good to hear a little enthusiasm in her voice and I could hear her giggling.

I am beginning to accept that I will be here for awhile.

Late today

Bathroom: 2 (4:30 a.m. to lose enema, 9:00 a.m. blood and mucus) Nothing all day. Bloating continues along with cramping and pain. Occasionally I get a gurgle or rumble and I hope!

I have done a little reading for school today. I also had to spend a little extra time with my little one who is really having a rough week. She had to cancel the teacher again today. I think we may end up in emergency tomorrow if this continues. Poor thing. We watched a movie together this afternoon and now she is taking a bath.

I am not hungry. I had my ensure and juice, I had little cup of jello. I had some water. I am too full to eat.

We confirmed a little birthday celebration for Sunday afternoon. My sister is going to bring cake and my mom will come and we will all sing. We have 3 birthdays to celebrate together. It will be short but sweet. I think my sister is going to stop by tomorrow on her lunch break too. The little visits help to brighten my spirits which are taking a little bit of hit right now.

That is probably why I was quiet for most of today.

Wednesday, March 25, 2009

Rap up

Bathroom: 2 - small mucus and blood

Still feeling terrible with bloating and lack of effective movement. Everything hurts tonight.
I am sure the enema will be loads of fun.

Glorious

Bathroom: 0 - blocked and bloating again

Took a bath and for the first time all day didn't feel any pain. I soaked up to my ears in hot water with epsom salts. I felt like I had room inside my body for all my parts thanks to the effects of the water.

This happened at the end of a long afternoon. I was feeling so terrible when John got home and I just wanted some relief. I totally let go and the tears came and that helped too. He brought me some jello, found the epsom salts and enabled my bath time.

He is now playing nurse maid to two of us. Getting us stuff to eat. Keeping us quiet.

We are all lucky because we had our magical cleaning lady here today so the house is clean and lovely.

I am just gald to be back in bed, even with the cramps starting.

That was a glorious 30 minutes that I intend to take again tomorrow.

All afternoon

Bathroom: 1 blood and mucus = lots of pain this afternoon. I am bloating again. Feels really terrible.

Spent the afternoon in bed. My friend called an put my mind to good use which was great and then she cracked me up a bunch which is always the best. It is those friends that I've known forever who just have to breath at me that right way to cheer me up.

I decided that I wanted to make a point of sending some letters while I am bed bound and since she has just designed some new cards, I have made a small order to get me going. She will probably bring them over on the weekend. It will be nice to have a project to do that has nothing to do with school.

Nough said.
Looking forward to tomorrow.

Company is so helpful

Bathroom: 1 m,b - lots of gurgling and rumbling and movement but not producing anything. crampy and uncomfortable.

My mom came to visit. It was nice. We discussed my health, my daughters health, my mom's recent vacation and she has offered to come back on Friday to help me get some laundry done. She also took my quilt with her. It is nearly finished and just needs the outside edge done. I just don't have it in me to complete t so she is going to take it in to shop close to her home and ask them to finish it for me. I hope they have the time. It will be so nice to have it done. She brought me some chicken noodle soup and good conversation.

Lindsay had to cancel her teacher again today. She doesn't feel well with a bad headache and nausea. She is in bed for the day. Fingers crossed for tomorrow.

We are planning a little family birthday celebration for Sunday. My sister is going to bring cake. My mom and step dad will come over and we will sing for the three March birthday girls.

I am having an orange Popsicle for lunch.

What day is it?

On the scale: 126
Bathroom: 2 (during the wee hours 1:00 and 2:30) m,d,b. Also used an enema but couldn't hang onto it. Had to let it go at 2:30

I had a terrible time sleeping last night. I was not allowed to take my sleeping pills because of the anethesia yesterday. I turned everything off. Couldn't sleep. I set up a movie on the little portable dvd player right beside the bed. Kept me entertained but when it was over I was no closer to sleep. Picked up my counselling theory text book and read a chapter. Now that Helped! Well, not really but after I read the chapter, I turned all things off again and refused to consider anything other than sleep. I snuggled up to John and made myself be still so that I would disturb him any more than I already had.

Not sure what day it is. They are strating to run together. My mother has just returned from down south so she is going to come sit with me this morning. It will be nice to have the company.

Doctors office called this morning to let me know that they are doing a medical certificate for me and confirming that it will be for another month.

Time for an ensure! Yummy.

Tuesday, March 24, 2009

A little fuzzy

Bathroom: 2 b,d,m - lots of gas

I am crampy and there is still pain.

I ate a little bit of chicken and some plain pasta.

I am still fuzzy from the drugs. Not making a lot of sense really.

Watching Rick Mercer, This Hour Has 22 Minutes, Monty Python (thanks to a very considerate young man), and then maybe a movie because laughing is good.

Inside the alien ship


Aliens are always said to use probes, aren't they?

Good news

Bathroom: 1 - d, m, b. Colon is sleeping

Eating some apple sauce. Cold and yummy.

Colonoscopy showed improvement. That is such a relief. I am back home in my bed. He has recommended an additional month of recovery. I can not push too fast too soon. I have also been told to start back on the salofalk enemas.

Glad it is over and I feel a bit better mentally. I was scared there for a couple of days.

Now I must learn to rest better.

Preparation

On the Scale: 126
Bathroom: 0 (except to pee). I can't pass anything. Not even gas. No gurgles.

I still feel bloated. I haven't eaten any solid food since yesterday morning (is yogurt a solid food?) I drank another ensure this morning and some juice and now I am fasting in preparation for the 1:00 colonoscopy. I am burping.

I am not so thrilled to be doing this again. I am just thinking that after this, we will have a better plan and I will really start to get better and I will start to enjoy eating again. Thankfully, I do remember the good drugs and that is keeping me calm.

Spring is playing shy the last couple of days. Our temperatures are around -11 and almost make it to 0 in the afternoon. It is brilliantly sunny though and that is cheery. It is actually easier to stay inside, in bed, when the weather isn't fantastic. Maybe spring is waiting for me.

I think I will print out the next week of course work for my class in prep for tomorrow. That way, no matter how I feel, I will be able to get some work done. I also have to start my last paper for this semester. I actually did my outline yesterday. I have lots of reading to do.

Monday, March 23, 2009

Bored, bored, bored

Bathroom: 1 - I went because my bladder was full. Due to effort I was able to produce mucus. My colon is not longer moving.

I drank an ensure and some juice. It was okay. I am starting to hyperfocus on food now though because I have decided not to eat any solids. I am not hungry it is the feeling of chewing that I want. I just want what I can't have. That sounds pretty sane.

But I am so bored. I finished the paper and now I am supposed to be relaxing. I am stuck in bed because I feel so crappy but I am not interested in tv, internet, or reading.

Blah. Bring on tomorrow. Let's figure this out and move on!

Trying to relax

Bathroom: 0 - All has gone silent again. Nothing is moving. I am uncomfortable with too much colon and not enough space to breath. I have an occasional gas bubble move around.

I ate a Popsicle. It was orange and good. I am not eating anything solid today. I will keep up with the juice, an ensure beverage, and lots of water. I don't relish the idea of being scoped when I haven't been properly prepared.

I finished and sent in the damn paper. I also completed some paperwork for my job and had Lindsay mail it for me. I won't start the next paper until tomorrow after my scope. I think I deserve a little time to relax.

Doctor's decision

I will go in tomorrow for another colonoscopy at 1:00 p.m. He wants to see what is going on.

Movements

Bathroom: 4 - first 2 just blood and mucus, then urgency doubled, last two fm and blood and mucus. Massive release. The block seems to have been cleared. Oh my goodness gracious me. I am taking pity on you and not posting a picture of what I just did!

This of course all started after I called and gave the doctors office an update. This means they will call back with a plan and I will have to give another update and see if they want to revise. Not sure what this all means. I still hurt like hell, I am crampy and have trouble standing upright, but it has to be good that things are moving again. It has to be good. I hope that soon I feel like I have enough room inside my body for my lungs to properly expand when I breath.

Floaters


On the Scale: 128

Bathroom: 3 (1:30, 3:00, 8:30) the blood and mucus continue. No FM. I am bloated and in pain. I am producing little floaters. Sorry if the picture offends. I like pictures. Be prepared at any time for pictures.


I had trouble sleeping last night even after taking the sleeping pills so I plugged in the portable DVD player, popped in my earbuds and watched a movie. It was relaxing and liberating to not be worrying for an hour and a half. It took me over an hour to sleep after the movie was over. I remember thinking that I should get up and so some school work and then I was out.

I ate some yogurt this morning and my handfull of pills went down with some orange juice (no pulp - because I don't like to chew my juice).

I am feeling surprisingly bright this morning. Totally contrary to the way my body feels, my mind feels awake and hopeful. It might be because I know the paper will go in today or it could just be because I can call the doctor today and get some advice. Whatever the cause, I am glad for it.

Time to go call the doctors office and see what he thinks of my progress.

Sundays totals March 22

Final count: 6 - only blood and mucus, gas and frustration

I felt little urgency and most of the time that I produced anything it was the result of effort.

Sunday, March 22, 2009

I don't like today

Bathroom: 2 - gas, blood and mucus. There was no urgency. I just felt like I needed to make space, to move things out.

My abdomen looks swollen. I feel full and big and round. I have pain in my parts again that had gone away, and this sudden stop in movements is not good. I have indigestion and nausea and lower back and abdominal pain. I feel my muscles all cramping up.

I ate a little bit of dinner (steak and mashed potatoes) but I have decided to go on liquids tomorrow unless I can start moving things again.

I am actually working on the paper. I read a journal article, referenced it and quoted it. Only 6 more to go and then to write an intro and abstract....

Bad to worse

Bathroom: 1 - painful abdomen, lower back and nothing but gas and a little blood. Damn.

I am in bed for the rest of the day. I feel sad. This is the part that I can't seem to prepare myself for. The sliding a little bit back. I just want to continue to feel better.

Yuck

Bathroom: 1 - only gas

I am all cramped up and nothing is passing. There is some gurgling and sharp pains and the slightest hint of blood. Not sure what is going on, I just know that it doesn't feel good. I guess I will call in tomorrow and discuss my progress. Things are probably fine, but it is always good to tell the nice ladies in the doctors office about my movements (or lack there of).

I ate some yogurt. I am now burping and slightly nauseated.

Meh.

Sunday Morning

Bathroom: 2 (1:00 and 9:00). D and M. More pain and cramping. Things aren't moving very well right now. It must be the tiny bit of pickle I put on my burger. Dumb ass. I know better.

Slept very well again with the sleeping pills on board. Probably got 8 hours. I only woke up when I heard others talking outside the bedroom door.

Ate cereal for breakfast. Didn't really enjoy it. I used to really like this type of cereal but it was too sweet and I didn't like it. I made myself eat it anyways. I am going to try to get some yogurt and apple sauce down today and we are planning a roast beef and mashed potatoes for dinner. I think I can handle that.

Lindsay is going out today. Her cousin texted her. My sister is coming to get her.

We have to get some groceries and meds but otherwise I will be here in bed, resting, and working on finishing this paper.

Final Count March 21

Final count: 11

Last trip: small, m, d, and tiny bit of blood

Crampy and pain today.

Saturday, March 21, 2009

Evening at home

Bathroom: 4 (the usual) crampy

John has gone out for the evening to be a rock and roll star in the basement band. He earned it. He needed to do it. My guitar playing is so terrible that I am not much company even when I feel good.

Lindsay had company this evening. Her best friend from school came over which was super cool. Lindsay hasn't had a lot of friend time lately since we don't live in the neighbourhood and she hasn't gone to school since January. She will probably be wiped tomorrow but sometimes it is worth it to have a little fun. Kids need to have fun!

And me. I am home. I have done a little writing (only enough to say that I did some, I really haven't accomplished much which means tomorrow will really suck) and practiced guitar for half an hour. I have played on facebook and now it looks like I have come full circle back to writing. Ugh.

John made us a chicken pasta dish for dinner so I was able to eat fairly well. I have had quite a bit of pain today in the left top corner. Not good. Something I ate yesterday is not making me happy. Wish I knew what it was. I also ate two sticks of a kitkat bar and it was almost good. Chocolate hasn't been tasting good to me for weeks. Ouch. Today I have pain. I wonder if a bath would help?

Made it home

Bathroom: 3 the usual now is m and d. Very crampy.

I feel like I have been successful! I was able to go shopping with Lindsay and do the exchanges and bring her home with new shoes on her feet! Hooray for us!

I did not use the bathroom in the mall. I think it is only sheer willpower that kept me from it. From the moment we were in the car, until the time we got home, I wanted to go. I rumbled, gurgled and cramped but I remained in control. I don't know how good this actually is since one of my problems has always been not going enough. It is probably better to let it out when it wants but at least I felt successful. We did cut it short and I am so glad that John took us so I didn't have to drive. That would have been too much.

I didn't buy anything for me. That is a sign! I went into 6 shoe stores and didn't get any. I walked past my favourite stores and didn't go in. No retail therapy is gonna help me right now. Maybe next week? The good news is that I will fit very well into last summers clothes with all of this weight loss. I don't think I will need much.

So I am back on the bed, with my feet up and I am trying to get some juice into me. I am watching the Arsenal match and thinking about my paper which has to be done and sent tomorrow night.

It was lovely to get outside. The sunshine was cheery. So much of the snow has melted and there are little sprigs of green. Thinking about the summer. Dreaming about the summer. Good thoughts.

Rise and Shine

Bathroom: 3 (1, 8:30, 9:30) no blood. m and d. crampy and small. Gurgling but not as much as a couple of days ago.

Had a good sleep. Taking two sleeping pills really seems to be doing the trick for me. I fell asleep within an hour and didn't wake up until John started to talk to me about being hungry. He was hungry but I got up and went to the kitchen because I am more likely to get decent nutrition today if I eat with him. I ate half a muffin. Drank a glass of orange juice and really enjoyed a cappuccino. I have been missing those.

Today we absolutely have to get Lindsay some shoes. Almost all of the snow is gone and she doesn't have any shoes to put on. She is wearing boots or crocks and she is not happy with either choice. I don't blame her. We also have to exchange a few things I got her for her birthday. She has her own taste and I am glad she exercises her right to take things back. I don't like it when people keep things they received as gifts and then never use them. It's a waist. So, John is going to drive us to the mall and I am hoping to manage about an hour to get her the spring things she needs and then hurry back home. A little bit of exercise might be good for me. I know the mall well (hung out there as a teenager) so I should be able to get to a bathroom when necessary.

I am happy to have everybody home today. The weekends are good.

I really want a beer. A really cold beer with a slice of lime. I haven't had a beer in months. I am not a big drinker and I don't usually really care. I might have a glass of wine once a week when all things are good but that's about it. I think it is the change in the weather and the idea of wanting something that I really shouldn't have.

My nose continues to give me a terrible time. It is so dry in the morning and it just bleeds when I blow it. It hurts. After a couple of hours things get a little better and the sneezing starts. I think this must be from the antibiotics I was on. I was having sinus issues before and I think I'm just not used to have cleared sinuses. Other aches and pains continue, like the sore throat that made it hard to swallow this morning, the sore shoulder, back, and gums are still reminding me that I am much much more than a colon.

Friday, March 20, 2009

Paying the price

Final count: 8
Bathroom: 2 more. d and m. not going so well. I am suffering from last nights dinner. The chicken isn't going easy on my colon. I can't seem to brake it all down. Very crampy.

Did things tonight anyway. I ate most of a burger for dinner. I watched tv with Lindsay even though were disappointed with no Ghost Whisperer. Then I played a little bit of guitar with John (I play some cords while he practices lead). I am only a beginner but it is nice to play together. I also did a little bit of writing.

Time for bed. Time for sleeping pills.

Slow lazy afternoon

Bathroom: 2 times - m and d. cramping.

I spent the afternoon in bed. I didn't even open a book. I was supposed to be writing a paper but I just couldn't concentrate. I feel sort of dull and uninterested.

I did contact work and gave an update. I also had the pleasure of a milk shake which was made for me by my lovely daughter. I couldn't drink it all but it was very good.

John came home a little early and took a nap. It was nice to have the company.

My sore throat is still sore. My shoulder and back still hurts.

Going to sit downstairs for awhile. John is making hamburgers for dinner. My idea. Hoping they will be as good and as palatable as I think they will be. He makes a mean burger. I think I can manage the meat.

My goals for tonight include watching Ghost Whisperer with Lindsay, playing a little guitar with John and writing a little bit of my paper. Wish me luck!

I'm late

Bathroom: 4 (1:30, 10, 1, 1:45) Good news, no blood. Just m and d. Gurgling and movement continues and some urgency.

I took two sleeping pills last night. It took 1/2 an hour but I went to sleep. Hooray! Problem was that I didn't wake up this morning and today I had to get up and take Lindsay to physiotherapy (her first appointment). The appointment was at 10:30 and I woke up at 10:00. Didn't have the proper time in the bathroom so sitting through this long appointment was an exercise in patience and pain management. I did get through it, without accident, and Lindsay felt good after the session so it was worth it.

When we got home I wasn't hungry so I pulled out the pie. It was no problem to eat the warmed cooked apple. Yum. I don't usually indulge in things like pie very often so it feels like a reward.

I am settled back in bed with my computer and HGTV. I have my school work beside me which I will some work on this afternoon. Keeping the brain working is good. My goal is to finish the draft of the paper today so that I can spend the weekend editing and then send it in on Sunday.

I also need to contact work today. I had really hoped that I would be getting better much more quickly than this. Looks like I will have a little more time at home before I can go back. I know they will be okay with whatever I need, but I have a very strong work ethic and I feel tremendous guilt at not being available.

Thursday, March 19, 2009

Final count

Final count for the day: 9 (2 not very productive)
Bathroom: last one was d and m. no blood. cramping and gurgling

Difficult day

Bathroom: 3 times. d and m, only a little blood one time

I just don't feel like I have any energy. I am really tired, my joints ache, my gums hurt, my back and belly hurt. It's not been a great day.

I haven't heard back from the doctors office so I am not sure if things are going the way they should. The slow down on the blood has to be good. Hopefully next week will start a big turn around and I will be able to start tapering off the prednisone, get some energy and go back to work.

I ate chicken and potatoes tonight from the shawarma place cause that is our usual Thursday night dinner. I even snuck in a couple of bits of lettuce. I want to eat vegetables! I hope I am not sorry for this. There may have been a little garlic sauce and humus mixed in with the chicken to make it palitable.

Every part of my skin is dry and my face feels scaley. The skin on my feet is getting noticably thicker and dryer and my hands hurt from the dryness. This must be from the loss of fluids. I don't see any of this noted as side effects.

I have to go out tomorrow to take Lindsay to a medical appointment. Hopefully, she comes home feeling better and I am okay too.

Had company!

Bathroom: 2 more times due to urgency but no movement, gurgling continues, cramps etc.

Friends came for a visit. My best friend since grade 5 (that's about 30 years ago) came over with her kids today so we all got to have some social time. It was nice. She listened to my whining and then we were able to chat and it was so nice and normal. Thanks you guys! Lindsay and her daughter have always been friends so it was great for them too. Her youngest is such a cute little man that I could just sit back and watch him all day. He is a bundle of energy and make believe.

I haven't been able to do any work today. I am just too tired to focus. So I have decided to give my self permission to rest today so that I can finish the work tomorrow. Maybe I will do a little research and see just how many sleeping pills I can safely take tonight. I think I am okay to take two at a time.

Slow to get going

On the Scale: 129
Bathroom: 3 so far (2:00, 8:30, 10:30) mostly just d (which is a definite improvement) with some urgency

I didn't sleep last night. I took my sleeping pill and then lay staring at the dark until 2:00. Then I turned the light back on a read a chapter of my text book. Still couldn't sleep. Did a little more school work, looked around on line, bought a book, played a game of facebook and then shut it all down again. By this point, John was awake so he rubbed my back to help me to settle. I didn't go to sleep right away but I stayed put after all his efforts. I went to sleep sometime around 5:00. This morning I have been off to a slow start.

I at apple pie for breakfast. I picked up this tiny pie at the grocery store last weekend hoping it would entice me to eat. I think I managed to eat a little more this morning so I am going to call it a success. I also had a little yogurt to chase down the handful of pills.

Today I have a sore throat, my nose hurts and is bloody, my gurgle and rumble continues, I am crampy, my skin is really dry and nasty and I don't care. I was told this morning that I look a little better and that goes a long way. It is good.

Wednesday, March 18, 2009

Final count

Final count for the day: 10

Back to bathroom 2 more times this evening. m, d, and very little blood.

Hoping for effect sleeping pill goodness tonight. Wasn't so good last night.

A long day

Bathroom: 3 more times, urgent, fast, all present m,b,d but less blood. My colon is in overdrive. I would really like the dragon to take a nap.

Had a repeat of last nights dinner. Just as good. Glad to have it as it is really the only thing I ate today.

I am very tired and sore. Everything seems to hurts, especially my joints.

Hope I sleep tonight.
Hope I am not so damn whiny tomorrow.

I have writing to do and I think I'd like to try to finish my taxes.

Warning - Bodily functions are discussed

Okay.
Seems some of my discomfort today is caused by my cycle. Like I didn't have enough to deal with but now I also have my period. Bloody Hell! I am in one constant state of cramping. My colon won't shut up and it won't relax. The gurgling is loud and aggressive like an angry beast is stuck in there and it is howling in frustration. I am now visualizing my colon as a nasty, spiky, fire breathing dragon (red).

I can't eat. Way to sick feeling. Did have tea and juice and another bit of muffin.

I had a nice visit with my sister. She made me tea, and then cleaned up and went home. It was really nice.

Now I am really tired. Just lying on my bed, reading school papers. Nice time to get sick, eh? During my first course for my masters degree? I guess there is really no go time to get sick. Crap.

summary: 2 more movements, more of the same, hurting and tired. b,m,d.

Morning

On the Scale: 129
Bathroom trips today: 3 so far (2:00 a.m., 8:30 a.m., and 10:15 a.m.) Lots of everything b, m, d.

It was a long night. I took my sleeping pill but it wasn't very effective. I almost fell asleep around 12:30 but a slight disruption left my eyes wide open again and I couldn't get my eyes to close again. At 2:00 a.m. I turned on the light and read an article for a paper I am writing. It's a huge literature review and I only got through a quarter of it but my eyes started to close and I realized I was reading the same paragraph over and over so I put it down and tried to sleep again. I was finally successful sometime after 3:00.

I woke up to the sounds of my wonderful man having an asthma attack. This time of year is so hard. While we happily leave the house without gloves, we have to deal with what has be festering under all that snow as the melting continues. It makes for bad breathing for some.

I am really crampy today. Sort of making me feel bent over. The rumbling and gurgling continue. It is loud and I can feel my parts moving in there. Not very hungry, feeling kinda queesy. I ate a little bit of a muffin after my handful of medicine and vitamins. I got a glass of cranberry juice in there too. I will keep trying.

Happy news today includes a visit from my sister and her daughter this afternoon, our house is being cleaned as I write this and I got a paper back with a surprisingly good mark despite how sick I was when I wrote it.

Tuesday, March 17, 2009

The count

Daily count : 9
things seem to be a little better.
knock wood
good night

Evening

3 more bathroom trips. Less b, some m and more fm. The rumbling doesn't stop. I am glad to be going. Seems healthier. Maybe staying in bed is really helping and the prednisone is kicking in.

I was not at all hungry but I was served such a fabulous meal, I had to eat. I had rice noodles with puff tofu, chicken, mushrooms, water chestnuts, onions, lettuce (all vegetables were well cooked and finely chopped) served in bowl of chicken and egg drop soup. Holy crap! That was really good. I called dibs on the leftovers in the hopes that it will entice me to eat tomorrow. Yummy.

Evenings are becoming the best part of the day. I get out of bed for a little while, talk and even laugh a little. Pook has had stories to share and John shares tales from work. Gonna do a little more reading for a paper I am writing before I call it a night.

Another movement

This was a little better. It hurts in my abdomen and my back but I just expelled more fecal matter and less b and m. Hooray!

Afternoon

Hmmm. Not much going on here. I mean really. I am rumbling and uncomfortable, nauseated and have no appetite. I feel things moving around in there and I feel lots of pressure. I am so bloated but it is like part of my colon is not receiving the message to empty. I don't want to complain because the urgency wasn't fun, but not going isn't so good either.

I have been two more times since this morning. I have to relax and meditate. I expel a little. All three still present b,m,d.

John came home for lunch and told me that I looked a little better today. My face looks a little younger and there is a little colour in my cheeks. I know what that means. It means the prednisone is starting to change my face! Last time I looked 'younger' was when a medication caused a drastic weight gain... suddently I was 21 again (really in my mid 30's at the time). No matter what is going on, it is nice not to look so sick. I looked pretty terrible over the last couple of weeks. So much that I stopped looking.

Haven't eaten since breakfast when I ate yogurt. I am not hungry.

I slept!

My sleeping pill was effective. I went to sleep around 12:30 or 1:00 and woke up at 8:30. I feel so much brighter!

My colon isn't so sure that things are better. It was not relieved all night. This morning I have only expelled blood and mucous. Things are gurgling and rumbling and I know it is only a matter of time.

My Prednisone is on board for the day. I am not hungry but I am going to try to eat some yogurt.

I have lots of aches. When I sit up for long my upper back between my shoulders aches, my hips hurt and my head aches. My nose bleeds everyday as well. I am hoping some of this will go away now that I am off those antibiotics.

John and I had a good talk last night and he explained to me what I didn't remember from the doctor's office. Seems things were a little more worrisome than I realized. Seems I was very close to hospitalization and John was relieved that he was able to bring me home. I am so glad he was there. He is really helping me to get through all of this.

Monday, March 16, 2009

daily count

One more trip to the bathroom

final count for today 9 (could be worse)

Hungry

I ate some dinner. Lucky for me I really like simple foods so giving up some of the things that I love hasn't been as hard as it could be. Most of the time I just don't feel hungry. I ate a bowl of rice and chicken while my fabulous daughter and partner ate curry. John makes really good curry but I knew that wouldn't be a good idea for me. He made the chicken for me two nights ago and it is so good I could eat it again tomorrow.

I am uncomfortable now. I ate too much. I need to learn to pay closer attention. I am also gurgling and rumbling again like last night which led to a long sleepless night. I feel like I need to go but I can't. I think I will fight back tonight with a sleeping pill. Maybe a good sleep will help.

The nurse didn't get back to me this afternoon so I will check in with them tomorrow. In this case, no news means no changes. I do need to call my boss. She has been so supportive and understanding. They aren't expecting me back this week but I want to keep her informed.

My daughter, Pook, continues to step forward to be helpful despite her own health. She just turned 13 and has been dealing with her own serious medical problems for over a year.

Two more trips to the bathroom. Both small m,b,d and pain.

Afternoon

Doctor's office has checked in. The very nice nurse told me not to worry, this is the nature of it and she will discuss my progress with the doctor. She thinks it will be status quo for a little longer until the steroids kick in and teach my colon a lesson. I am waiting to hear back from her.

I have been back to the bathroom 2 more times. m,b,d. Pain is coming and going, but not as bad as last night.

Mornin'

On the scale: 131
During the dark: Up at 2:30 and 4:30, pain in upper left area and producing only blood and mucus. Bathroom at 9:00 again, b,m,d.

Didn't get much sleep. Closed eyes after 5:30. Up at 9:00. I am a little disappointed because this is the beginning of the second week and I had a terrible night. I thought I was improving a little and then yesterday I spent the day in bed, in pain with the bleeding increasing again. I know, I am such a newbie. The doctor's office said we would talk to today so we will see what they say.

Just took my handful of pills. Today is the last day of taking the Metronidazole and Ciprofloxacin. I am glad since they make everything taste wrong. Yuck. I'm not very good at taking pills either. My partner can take a handful of vitamins and meds all at once with a swig of juice. Not I. I can only seem to get down two at a time.

First visit of the day

Up to bathroom just blood and mucus. Not surprised I guess since I felt so terrible today.

Sunday, March 15, 2009

Diagnosis

On Monday March 9, 2009, my diagnosis of Ulcerative colitis was announced. I had been sick for three weeks and my previous medications used for proctitis were not helping. I was no longer able to go to work, to take care of my family not to mention myself.

I was in pain all the time and was experiencing urgency to get to the bathroom to expell large amounts of blood and mucus. I had lost about 10 pounds although that didn't put me in a bad weight place, it did indicate a problem.

Two years ago I went through what I thought was a bad flare up of proctitis (from which I have suffered for 13 years, first diagnosed during pregnancy). I was given salofalk enemas to add to my salofalk suppositories and within a couple of weeks all things were back to normal (except my weight which I was happy with as I had lost the dreaded last 10 pounds of baby fat).

Back to the present, salofalk didn't help at all. I wrote to one of my best friends who also has UC and got some advice. She and my partner, prompted me to take the steps to get medical care and that resulted in a visit to my fabulous gastroenterologist.

He is awesome. He took plenty of time to explain all the possibilities, what he might find, what he might prescribe and what action may have to be taken. He suggested that we would likely start with some stool samples and antibiotics and then move to prednisone if necessary.

He asked for the pediatric scope, stating that I was a little person and Ithought this was not only hillarious but great! Then he administered the pain killers and anesthesia and I didn't care about anything. The test was painful and I was surprised at how often I kept coming to moaning and wishing for the end. I know my insides were on the screen but I couldn't see and I forgot to ask for a DVD version to take home (this is a joke, I don't think it is offered).

After a little time in the recovery room he came in to tell us that I needed to start on the prednisone immediately, there would be no waiting. I also started on two antibiotics and provided three stool samples (really there was no stool, only blood and mucus but that was all that I had).

For three days, I took my meds, lay around in bed and hoped for something to feel better. It didn't. The bleeding increased, I could hardly eat and I lost more weight. Thursday afternoon, the prednisone was doubled.

Each morning I still get up cramping and bleeding but the rest of the day the blood is about 1/4 of what it was. I go to the bathroom 8-10 times a day I think but I need to keep better track of that. I am bored of my bathroom. I am trying to eat more, but I often feel very nauseated. I was told by my doctor that I could eat all the chocolate I want but it just makes me feel barfy.

Today is Sunday and quick trip out to the grocery store has completely floored me. I have been in bed ever since with terrible pain. I want to eat but I don't want to. I want to do something, anything but I can't and I am so tired.

I think I am beginning to understand what this diagnosis could really mean. There is no cure, no quick fix, no easy answer. This will require care, caution and support. I am trying to deal with this as a life change and it is overwhelming. I am sad and grieving my good health.

So this is the first post. We will see if I continue. I hope to track my illness and my travel into remission.