It sounds like you possibly have something else going on as well. Have you been on antibiotics?  I think you could have pouchitis. I have a ton of trouble sleeping when I have it but it doesn't bother me during the day. It also makes you feel very gassy and uncomfortable.

I have taken antibiotics on and off since my takedown surgery - and they help a little but nothing tremendous changes. I still rely on the pain meds for my comfort. Both my gastro doctor and my surgeon have thought some of what is going on might be pouchitis in the past, but they don't think that is what it is now. After my fistula surgery and as well as many exams, they say my pouch actually looks really good.

I have even tried some physical therapy to help with the pain and it doesn't help. I feel like there is something else going on. I eat decently healthy and a fairly strict certain foods, but the cramping and pain (which comes in waves every few minutes without the pain meds - and makes my stomach growl really loud for everyone to hear) just won't go away. And in turn, I am also like I said struggling horribly at night. I don't even know how to sleep anymore it makes me nervous just getting into bed...

When my doctors thought my problems were pouchitis they did give me the antibiotics cocktails, as well as put me on probiotics like visbiome as well. I never noticed any changes.

Hi Brad,

I have had my pouch for over 20 years and have experienced much of what you describe at one time or another. After years of problems and experimenting with different approaches and meds, the simplest most effective change I ever made was to eat one cup of cooked gluten free steel cut oatmeal every morning. I believe it somehow acts as a "broom" to sweep everything out of my system by around 3-4 in the afternoon and what'sleft behind continues to absorb liquid allowing me to get a good nights sleep without issues. It's importantthat you buy only the "steel cut" version...other oatmeal doesn't have the right textureor stiffness to be effective. 

Hope this helps...good luck to you.

There are a few approaches that help some people get through a night’s sleep undisturbed. Two that I think have the most promise are 1) a bowel slower, perhaps two Lomotil, at bedtime,  but not during the day, and 2) a fatty snack, like a spoonful of peanut butter, at bedtime.

If you are taking opiate pain meds all the time then it may be very difficult to get your gut in order. Your body will still have to push through the residue of everything you eat, and opiates really get in the way of that. Good luck!

I was having accidents sometimes at your stage in the game, but I think you should still get checked out to be safe.

First off, thank you all for replying. I have been struggling mentally a bit as well and it is nice to have others who understand what is happening helping me. I very much appreciate it.

Eliza, I will definitely look into the steel cut oatmeal. I normally eat regular oatmeal right now but I am willing to try anything that may help me.

Scott, I haven't tried the fatty snack before bed but I will starting today. It makes sense why it may help. I already take two bowel slowers before bed as well, which is another reason why this is becoming so difficult to deal with. I am working to ween off the pain meds, I am just finding the cramping pains and gas pains to always come right back and be extremely painful.

Lauren, I agree. I actually have a follow up with my surgeon tomorrow morning, so I will see what his input is. I pray something will come up that can help me and can make this life a little easier to live through.

Thank you all again.

@Brad Epps posted:

First off, thank you all for replying. I have been struggling mentally a bit as well and it is nice to have others who understand what is happening helping me. I very much appreciate it.

Eliza, I will definitely look into the steel cut oatmeal. I normally eat regular oatmeal right now but I am willing to try anything that may help me.

Scott, I haven't tried the fatty snack before bed but I will starting today. It makes sense why it may help. I already take two bowel slowers before bed as well, which is another reason why this is becoming so difficult to deal with. I am working to ween off the pain meds, I am just finding the cramping pains and gas pains to always come right back and be extremely painful.

Lauren, I agree. I actually have a follow up with my surgeon tomorrow morning, so I will see what his input is. I pray something will come up that can help me and can make this life a little easier to live through.

Thank you all again.

Your welcome