Hi Everyone, I have been reading for a while and have ready lots of useful information.
This site was recommended by my surgeon.

I have had UC for about 10 years, and have been on prednisone almost the entire time. Also tried lots of other drugs, and am currently taking remicade and Tylenol 3 only and have been off prednisone for about a month due to the surgery date. It seems I have started to get some side effects from the remicade (headaches, eye pain, pain from my lower back area going down my legs, dizzines etc)

I have decided to get the j-pouch surgery (3-stage) and I go in on friday, although I am starting to get second thoughts (cold feet?)

The reason is, if I stay on remicade, and take tylenol #3 (1-2 everyday) I feel pretty good. I have maybe 1 BM a day and no pain or other symptoms (except for gas pain, drowsiness)

If I stop the T3, I start to get lower left side pain, back pain, and the BM's start coming back with pain, kinda weird, it seems the tylenol #3's are holding me together. My memory and dizziness and general weakness may be caused by the remicade.

The only way to get off the drugs though is to do the surgery and prevent further side effects from the remicade from affecting my life later on down the road.

Anybody out there who may have been in the same situation, and decided to through with the surgery (not sure if things will be worse off for me).

Any help appreciated.

Jay-P,

My situation was similar to yours. I had surgery after 5 years
of misery with UC. There are numerous excellent posts on this topic
in these two threads:

http://j-pouch.org/eve/forums/a/tpc/f/5951071921/m/6141050272/p/1
http://j-pouch.org/eve/forums/a/tpc/f/9151071921/m/9221083372

I believe narcotics like the codeine in Tylenol 3 adversely affect
the smooth muscle tissue in the intestines over the long term,
making toxic megacolon more likely:
http://www.blackwell-synergy.com/doi/abs/10.1111/j.1572-0241.2003.07696.x
[I finally got this link right; sorry for all the edits.]

Remicade is clearly causing you to experience serious side effects, which
the Tylenol 3 is masking. You've taken your lifetime allocation of prednisone
many times over. I think you would be well advised to have the surgery.

This message has been edited. Last edited by: bobolink713,

Many of us get cold feet as the surgery date draws closer. I compromised a lot of my life to my disease. I missed trips to Europe and lots of time with family and friends. I rationalized my declining health and learned to lower my expectations. UC robbed me of 2.5 years of my life and at the time I thought that was okay.

It's probably only a matter of time before you have to have surgery, you can continue with your Remicade but you are most likely postponing the inevitable. You are steroid dependent (I was too) and that is reason enough to have surgery. Now in hindsight I feel that surgery has been the best health-related decision I have made to date.

Sue