jpouch hell

Have you tried taking anti-spasmodics before meals? It may be that you have a spasmodic pouch. Bentyl, levsin, donnatal are drugs prescribed for this problem and taken 30 minutes before meals. If most of your BMs are coming right after eating something, in rapid succession, then that is probably the issue.

Sorry you are having such a difficult time Mike.

You are taking the maximum loperamide dose. I'd suggest you ask for lomotil or even codeine or similar to slow things down if there is no improvement in the next few weeks (or even now, if you think it is time).

Around three months most people see improvement, but it can take longer.

DO NOT STRAIN!!! If you can at all help it, don't do that, because it can cause pouch prolapse. But, what you can do, is wait a while after you think you are done. Even stand up for a few seconds, then sit back down. The pouch fills mostly by gravity, so after the initial emptying, wait a few minutes for some more to move down into the pouch. This is a very frequent complaint, having to return to the toilet minutes after leaving the room.

Holding it may help stretch the pouch, but don't make yourself miserable.

Check the diet link at the top of the page here and make sure that there are no things in your diet that increases output. Often, people think they are being careful, but find out their "good" foods are not so good.

Jan

Thanks jan, where is that diet link again I can`t seem to find it. I will try your suggestions and wait a few more weeks as its nearly 3 months to see if things improve before changing my meds. Thanks again, Mike

It says "dietary guidelines" and is in the grey bar at the top of the page. Here is the link:

https://www.j-pouch.org/diet.html

I would not wait to change your meds though. You can always back off of them as your function improves.

Jan

Ask your Dr. about Dicetel, I was on loperamide and dicetel 3x per day for at least 6 months post j-pouch and it really helped to slow things down. Take them before meals.

thanks will do.

hi have you tried taking your loperimide 15 minutes before you eat

Have you had a pouchoscopy after your takedown? You could have pouchitis. Some of us were "privileged" to have it day one after takedown. If so, it needs to be treated for you to start getting better.

I found Lomotil works well. That and a really good skin protectant!

thanks everyone for your help, and I will try taking my loperimide before meals I usually take it after.

Mike, I am about 3 months takedown and was miserable with spasms and frequent potty runs. I was averaging about 15-20 times a day. I was getting more and more miserable as time went on versus seeing improvement. My surgeon prescribed lomotil which I take 4 times a day, Levsin for the spasming which I also take 4 times a day and then she told me when the frequency was bad to take 2 imodium and then wait and hour and if no improvement another 2. That seemed to work alittle bit but then one day no matter what I did or took I hit the bathroom about 30-40 times...she saw me immediately and thought maybe I had a case of pouchitis. She opted not to scope me but rather prescribe the antibiotics and see if I had any improvement. She prescribed both Cipro and Flagyl and after 2 days I couldn't believe the marked difference it made and how I felt. I have been averaging about 7 potty runs a day. No urgency, no spasms, no gas. It has been heavenly!!! She said more than likely I had a case of pouchitis that was probably brewing for a bit. I am still on the antibiotics but have not had to take any imodium and have been decreasing on the frequency of of the Levsin and Lomotil I have been needing to take as well. I am not someone who likes to take antibiotics but maybe your doc would be willing to prescribe them and see if you have any improvement. It can't hurt, right? I was alittle surprised that she thought maybe I had a case of pouchitis since I have been taking VSL3 since my initial surgery but heck, like Liz said above...there are some whom are privileged to have it day one after the take down surgery.

Mike you might want to try the loperamide exactly 30minutes before meals and then right before you go to bed.

If that doesn't make a difference, pouchitis might be suspected.

I am 7 years out and I finally have the system to get me to 7 or so BMs a day. I eat only 2 meals, avoid fiber and gassy stuff like beans and hot food (no esy here in Louth Louisiana!). I take lopromide after meals and codein at night. As long as I don't eat I am fine. I find I go 3 or 4 times after each meal so I plan accordingly. I have also found that liquid meals like Ensure or Ensure with Yoghurt and maybe a banana only take one or two BMs so I eat that kind of meal if I am away from home. It gets better on its own .... a little but I don't think anyone gets back to pre Colectomy "normal".

Mike,
You are right when you say j-pouch hell. I, too, went through hell and I wanted to die. There is nothing worse than living on the toilet. It is painful, depressing and exhausting and I feel so sorry for you. Have you ever tried Pepto Bismol? It is safe and it has given me such relief, acting like an antibiotic. It cannot hurt to give it a try - maybe one in am and one in pm. I do not think your doctor would object - none of mine did and I have seen too many to count. You have my sympathy but I am sure in time you will improve.