My suggestions for those facing j-pouch surgery

DaleerMember

I've been very lucky with a good j-pouch outcome for the last 14 years. Someone recently emailed me asking for my suggestions for a better recovery/outcome for one facing surgery. Here is what I thought of based on my experience in case it is helpful for anyone.

1. Have a good surgeon!! If the majority of a surgeons patients are doing great and he doesn't hear from them any more you are more likely to have a good outcome. Obviously the skill of the surgeon is important.

2. Try to be off all prednisone and corticosteroids for a while before your surgeries because you will recover much better and faster. I realize that isn't an option for everyone but keep in mind that prednisone really hinders your bodies ability to heal and when you are having such a major surgery the difference will be major.

3. Expect a good outcome and expect to be all better after the surgeries and healing. Most of what you read online is from the people who are having a hard time...the people who are doing well go on with their lives so they aren't spending time writting about j-pouches online. So keep in mind that what you find online is mostly just the bad stuff.

4. After your surgery go SLOW! Allow your body plenty of time to heal before hitting the gym. No need to rush working out again.

5. When you first start using your new j-pouch at first just go easy on it. After a few weeks though you need to start conditioning it to store stool. So little by little start holding on a little longer than is comfortable before going to the bathroom. Try to go longer and longer without using the bathroom. Go a little past your comfort level but don't hold it so long that you are in pain. Doing this will make your anus muscles stronger and also accustom your j-pouch to holding on to stool (at first small amounts of stool will give you a strong urge to go to the bathroom). Eventually the small amounts of stool that would send you to the bathroom will no longer register on your radar.

6. Never allow yourself to get dehydrated especially when you are first getting used to your new body. Also avoid mushrooms and especially lettuce until you know if you are prone to obstructions. Stay well hydrated to keep stuff moving well through your intestines.

7. Avoid NSAIDS after you have the j-pouch so you don't get pouchitis. I don't take any probiotics and haven't had any pouchitis since quitting NSAIDS 11 years ago.

8. Once you are fully healed try to forget you have a j-pouch and get on with your life. I don't find my j-pouch to be fragile at all but keep your abs strong to protect your insides.

6/9/204:24 PM

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Scott FMember

This is a good list, Daleer. I’d offer a couple of additions as friendly amendments.

9. In the early days apply a barrier cream after every bowel movement. This can be simple, plain zinc oxide or Calmoseptine, Desitin, or Ferguson Formula. Most J-pouchers can eventually abandon this, but it helps prevent a very common kind of butt burn in the early days, and when frequency is high.

10. Consider trying soluble fiber, like psyllium powder. This will add bulk to the stool, which is more comfortable for some J-pouchers.

11. Have a bowel slower, like Lomotil or Imodium, available. You may not need it, but you may find it makes overnights and/or some outings more comfortable. These are most effective in moderation, and can cause trouble for some if overused.

12. Make sure you have a constructive relationship with a J-pouch-knowledgeable gastroenterologist.

13. Don’t strain on the toilet. This is about relaxing some muscles and tightening others, and you can’t force your way through that learning process. One method that has helped me master this is to urinate without defecating a few times each day.

14. Be patient and gentle with yourself. This is a long process, and it’s sometimes difficult.

6/9/205:41 PM