I have had my pouch for 14 years now and have dealt with chronic pouchitis and cuffitis most of that time. Meds have helped and overall, it has been a good experience. The last year or so, things have gotten more interesting. I started having trouble emptying and have used enemas more and more just to empty fully in one go instead of many not very productive ones. The last month or so, I have had more and more trouble emptying. I have seen my GI a lot, had many scopes and recently saw a surgeon who put me on Uceris. I am also on Humira, rotate antibiotics and take VSL.
I saw the surgeon a week ago and she did an exam and told me to stay on Uceris. She said she believes I will eventually need to have the pouch removed as I am not a candidate for redo. Since I saw her, I can barely pass stool and have to use an enema 95% of the time. I am not even getting urges most of the time. The day just ends and I realize I have not gone all day and I go deal with it.
I will call my GI doc Monday, but in the meantime, has anyone experienced this? It is like my system is just giving up. I have a dull, weak pain on the right side of my stomach, but otherwise, no pain. Any words of wisdom?