Hi all, I haven't been here for a while.
Well I have had my Jpouch for over 20 years and on the whole it has been pretty good. I can say this even though my colon was removed due to a misdiagnosis of colitis.
Now, so they say, I have crohns and I was encouraged to start infliximab 2 years ago. Since then my health has been far worse. Starting infliximab was ok. However, then I had to stop it due to getting shingles. During the 3 months I was off this, I had 3 hospital admissions due to blockages/obstructions. I have now been back on the infliximab for 6 weeks and already had one admission. All of these obstructions have cleared on their own without anyone being any the wiser as to why they occurred.
A surgeon who I have seen once before and who conducted a pouch exam says that I have a stricture at the 'start of the pouch' and a few others further up and I need to accept I will have to have an ileostomy pretty soon.
As you can imagine, after having my colon wrongly removed, having a JPouch I never needed and being given infliximab which has made me worse, I am reluctant to accept this diagnosis. Also I had a temporary ileostomy for 8 months once and it was the worst 8 months of my life. I was filling every half and hour and leaking etc etc. However, this surgeon thinks I would have a better quality of life living like that!
So my question is...is this surgeon correct, why is my only option a major operation?? By the way, another medical doctor said my pouch may 'disintegrate' during an operation. I find this hard to believe as it is enduring 10 bm's a day without any problems. Help!!