I'm a strong believer in Dr Shens view, being one of the foremost leaders on troubled pouches that a diet low in sugar and carbs and instead high in protein and fat can lead you down a pouchitis free road. I swear if you go paleo you will almost never have a bout, just my opinion though.
"LOW sugar, LOW fiber, HIGH protein and High fat diet." - Dr Shen.
I would honestly rather have an ileo for life than follow the paleo diet for life.
Why do they have to deconstruct the pouch? why not just leave it there? I still have my rectum, and once in a while I have to push, but it's not that often where it's a huge problem.
Because the diverted bowel tends to became inflamed without anything passing through it. For some people this will produce no symptoms, for other people it will be more troublesome. I really hope this doesn't happen to you, but after a while I developed diversion colitis in my rectum. At first I was just passing mucus very occasionally - once every few weeks. By the time I had my takedown surgery I was 'peeing' significant amounts of mucus most days. Less frequently I would have bouts of urgency, cramping and passing blood. None of this was nearly as bad as the original Crohn's, but it was something I could have done without.
My GI prescribed salofalk enemas for me, but I never used them. Don't know if they would have helped or not, but I didn't want to risk a bad reaction to the mesalazine (which I had had to oral mesalazine in the past).
Silent Lucidity said...
So, let me get this right, if I return to ostomy, I get to empty a bag AND go from the rear, for life. I certainly didn't get that info included with the sentence "don't worry, we can put you back".
I agree with you on not wanting to live like a UC patient again. Thing is, with the exception of the last six months of my sixteen year UC "career", this pouch is worse, WAY worse.
I often wish I'd kept my Colon and taken my chances, if the UC had killed me at least I wouldn't have been dealing with any of this now. And I mean every word of that, I'm not being flippant, that's how *****d off I am with it all.
NHS doctors in general are appalling at informing patients. They will answer questions, but it's often hard to know which are the right questions to ask beforehand: there will be inevitably some things you hadn't thought of. For example, you were obviously assured you could go back to having a stoma. I would probably have taken that at face value too, and not really thought about
what would happen to the pouch. I know now - mostly from Pluot's posts - that removing a pouch can be a very difficult and delicate job if a lot of scar tissue has built up. I also know now that leaving a pouch/rectum sitting there indefinitely is not ideal. One thing which bummed me out was learning that I could still get cancer in my rectum, even though it was disconnected from the rest of my GI tract. That's another reason why, if I had to go back to a permanent ileo, I would want every
Asking on forums isn't much better, as the feeback you get will always be incredibly biased. People who had a good outcome tend to gloss over the bad parts and vice versa. You're probably better off just combing through old forum threads; threads like this one, for example.
Anyhow, if I was in your shoes, I think if I was going to return to a permanent ileostomy, I'd insist on having my pouch removed. Actually that could happen to me; if the Crohn's returned and it was bad enough, I would revert to an ileostomy.