Have you considered a kpouch? Is it def pouchitis? I was misdiagnosed with it and never had it. I had c.diff and antibiotics made it worse over the year. I also have SIBO.

I wonder about the same thing, my take down was 3 years ago on 12/29. I figure my adhesion pain will potentially get worse if I have more surgery as I will still be using most of my small intestines, as I am now, because I'll have another operation to cause more adhesions.

I have IPS, have you considered or has your GI considered if you have IPS vs or along with pouchitis? I started a thread a while ago about this and have 3 links in several posts in there regarding IPS. I had IBS along with my IBD so it makes sense that I have IPS I guess. I don't know why they refer to it as all in my pouch. I think of irritable bowel, or pouch, syndrome as including at least part of my small intestines as I don't feel it in my pouch as much as I do in my abdomen. So will I still have this pain and would you still have abdominal pain? I don't know where you feel your pain at.

My number of bathroom trips are manageable and my weight is too. I am tired of the pain and being on Hydrocodone pain medication daily for almost 3 years with no end in sight. I have many other health problems but they don't require this heavy duty pain medication. I also have partial obstructions and would still have those if I went to a permanent stoma.

This is how I talk myself into keeping things as they are. I'm afraid things will not improve and I absolutely hated my temp ileostomy. People say permanent stomas are better than ileo's but I had a hard time with mine in many ways.

Have you been evaluated for other health problems that could be affecting your quality of life? I have fibromyalgia which greatly affects my QOL in many of the ways you were describing. I got fibro after UC and being on a strong dose of Prednisone for a long time. It's gotten worse through the years. Unfortunately once we get one autoimmune disease others tend to follow.

Rhema,
My definition of when it is enough? I will know it when it happens. I have a very high pain tollerance and have a reasonably good constitution but there are times when the pain and surgeries start to add up...no one can tell me when it is time, I have to be both physically and mentally prepared to accept the next step, whatever that step may be.
I wish you peace of mind and an easy decision.
Sharon

Rhema,
I've had my pouch about 20 years, going to the bathroom every 1.5 hrs on the average but got used it it. I was diagnosed with lymphoma 2 yrs ago and the systems then got much worse, in the bathroom about 30 times a day, severe pouchitis.
I am on cipro an tintazole now and am back to every 2 hrs which for me is good, I've adapted. I go to Dr Shen at CC every several months for ballon dilitations for my strictures. My rectal vaginal fistula is now leaking to vagina a bit for the first time so I'm thinking about going back to a colostomy so I know your frustration.
I am still very active traveling and playing sports daily, I just have to run to the bathroom a lot, no pain thank goodness.
I think its great to talk to the different MD's to get their opinions and then make your own decision.