This is just something I want to put out there.
One thing about living with UC is perpetually having the "demon", the fear of a coming flare (not if, but when) or of the flare getting worse or just never seeming to end. I think this demon creates a high background level of stress/anxiety even when in full remission. (In my longest full remission, around 9 years, the fear sort of disappeared after a few years and I conclunded I had been misdiagnosed- a big mistake because I stopped researching, taking any meds or supplements, or doing anything to prevent another flare in the future).

I assume this end of the terror, or demon, is one of the bigger benefits of surgery, or does the fear of pouchitis and other issues sort of keep the "demon" alive? Or does it just take years to shake ioff the nagging fear that accompanied every day with UC?

Christopher UC flare (still living with the demon)

I had UC over 20 years, so my biggest fear was developing colon cancer. So, once my colon was gone, so was that fear. In most cases pouchitis is not that terrible and can be taken care of with a two week dose of cipro or flagyl. I think once your pouch adjusts, you start to calm down. It takes a while to relax and really believe things can get better, but they do.

janna

In the 6 years with UC I never had much time between flares. So the demon theory doesn't really apply.

But I can tell you I do not regret my surgeries one bit. I don't fear pouchitis and have luckily not had it. But I am confident something could be done about it.

That being said, I am sure people with pouchitis experience can give you more perspective.

I think I worry more about pick pockets in Europe for our vacation this fall. But, seriously, health is always on my mind because I always have something going on. I cannot say I don't think about pouchitis, because I take medications that can contribute to it, so I am always on the lookout. But, it is not anxiety provoking to me. I can walk and talk and do all the things I need to do to live a full and happy life. That's my focus. I don't worry about things being perfect.

Jan

I don't want to ever get pouchitis or have to worry about so since I came home from takedown I immediately starting taking VSL#3 as a preventative. I figure why wait to get it (possibly). Some good bacteria is not going to hurt me. However rather than take the full dosage I take half of that because I am not treating anything. So far so good. I don't worry about it at all anymore.
Amanda

While I was waiting for my impending surgery date I thought a lot about the unknown, that is life post surgery and how I would feel. Living with chronic UC was a "known" for me. I assumed I would still feel uncomfortable even without a colon as that was all I knew. I was AMAZED upon waking from surgery to not have any feeling in my abdomen and to know that this is what non-IBD people feel like. I made the comment to my surgeon and he said that is the first statement all of his UC patients say upon waking from surgery, that they can immediately tell the disease is gone.

Sue

Dear Christopher,

I had UC for about 20 years before I decided to finally have the surgery. When the colon was gone, the demon was gone. I know exactly what you're talking about because I was there, too. I haven't even had my takedown yet, but even with an ileostomy bag, life is so incredibly better, I just pinch myself and thank my lucky stars that I finally took the plunge.

Good luck with your research and your decisions!