I'm done!!!

If dialing back your diet to the most basic stuff has no impact, along with maximum Imodium dosing. You need to look at something else. But, remember, it takes a few days of constant use of Imodium to build up the level that gives you a baseline effectiveness. The same would be true of antispasmodics.

The docs have ruled out pouchitis and structural defects, but have they ruled out bacterial overgrowth? This causes pouchitis symptoms without any evidence of inflammation. A course of antibiotics would be diagnostic, if they worked.

Yes, it does take time and patience, but you should not be going every 30 minutes. Some of us need opiates to get a real slowing effect. Have you tried lomotil? Some people get a better response with lomotil instead of Imodium. A "last ditch" option is Sandostatin, which is an injection, but it is expensive and does not always work either. You definitely need something that works until you get past this rough patch.

Most people see a significant improvement by 12 weeks post op.

It is easy for the docs to tell you to be patient. They are not the ones chained to a toilet, literally flushing their lives away.

Jan

Lomotil is called co-phenotrope in the UK. Yes it is prescription only, but your GP can prescribe it.

http://en.m.wikipedia.org/wiki/Co-phenotrope

Jan

ucbloke im having same issue had takedown 3/2 going 15/20 bm a  day no slept night up every hour taking lomital 4xday just increased to 2 4xday tonight so see what happens also take imodium 3xday and citracell 3x day and i have very painful fissure now i also wish i had bag a times i will get break every so often then starts back up very frustrating trying lomitol 2 tabs 4x day for few days if don't work i have prescription for tincture of opium need a break good luck jj

With this kind of extreme frequency I'd be surprised if bowel slowers helped much, though that's what everyone seems to try. If you're feeling urgency when a tiny amount of material enters the pouch, that's the problem that needs to get tackled, IMO, since there's no safe dose of bowel slowers that will keep your pouch totally empty.

Lots of different things can potentially make the pouch overly sensitive in this way. A brand new pouch is often described as needing "stretching." While it probably doesn't actually stretch much, it does seem like a new poucher ought to try holding it in for increasing amounts of time. There may be some accidents, especially at first, but you can't truly know your limits if you don't test them. This is probably a combination of things like getting used to new sensations, strengthening the sphincter, and perhaps training the twitchy pouch to calm the heck down. Sometimes an antispasmodic medication can help, and some people seem to be helped by bland, low residue diets. Some people find it easier to hold in thicker stool, and soluble fiber can help there (but fiber will also increase bulk).

Pouchis and cuffitis also seem to make the pouch hate to have anything in it. No amount of "stretching" will help those situations.

Remember that soluble fiber is used to *treat* constipation. It doesn't make bricks at all. I've used it every day since my surgery 13 years ago.

ucblake today only 2 bm last one 6 hours ago knock on wood took max dose of lomitol=2tablets 4x aday 2citriceell 3x day someprobiotcs 3 a day gummies imodiuom 4x day 2 tab keep u updated

Not sure if this will help you guys or not but whenever I had any severe pouch fequency (I have a k pouch but it is still a pouch) I took Gravol, Dramamine (also know as Primeran in France) or any simple motion sickness medication that they give to people who tend to throw up during drives or flights.

I found that it slowed my bowels to a near crawl which when traveling was a blessing but may be what you need right now. It also has a side effect of drowsiness so it helps to give you a good night's sleep too.

It is OTC so you don't need a script for it and can be taken in varying dosages. I tend to start with a child's dose (they have the kind that dissolves under the tounge) and work my way up.

Might be worth the try for you

Sharon

ucbloke yesterday was better 8 bm all day then 8 more during night wish i could stow down night time and it be ok 7 bm so far today see how night goes now

UCBloke, I'm so sorry you are still feeling poorly.  Wish there was something to say other than hang in there.  It's awful, I watch my son going through the same stuff.  He never gets out of bed and I wish there was something I could do.  feel better

dianne

He had his entire large intestine removed June 2014, then he had his takedown in September 2014.  We had a few serious complications that took a while to figure out, but in March of this year the decision was made to take him off the j-pouch and give him back his ostomy.  The complications he has are rare and difficult so our surgeon is sending us to The Cleveland Clinic.  We may be going out in June.  Not sure yet, the surgeons need to talk.  It's been a really long haul.

He does have his stoma back.  In that respect he is feeling better but unfortunately he is addicted on the pain medications and trying to get off them.  What a difficult process that is!  I wish I could get him out of bed, the doctor said that would help, for him to stop laying around and not getting out.  But he feels so crumby from all the meds.  Hopefully he will be off of them in about two weeks time.  I'm getting my break!  I'm leaving for Florida tomorrow for a few weeks.  Then I'm meeting the family in Disney World.  So it will be fun. First family vacay in over five years.  So I'm really looking forward to it.  

You sound like you have had more than your fair share of problems too.  I hope you feel better soon.