Thursday, February 25, 2010

Good News

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.

Wednesday, February 24, 2010

Another Day

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.

Monday, February 22, 2010

My colon made me do it

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*

Sunday, February 21, 2010

He listened

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.

Wednesday, February 17, 2010

Lost Control

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.

Monday, February 15, 2010

After

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.

Monday, February 1, 2010

Before

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.