Hello everyone,
My pouch has been active since Sept. 2005. Things have mostly been ok during that time. I didn't have most of the problems I expected to have after takedown and haven't posted for a while, although read the posts often.
Within the last couple of months, however, things have gone downhill. I have been getting strong cramping pains, with urgency and have had a few accidents both at night and during the day. It is sometimes like my ability to control has gone. It feels like the pressure in the pouch builds up and despite clenching as hard as I can the stool is pushed out. It is highly demoralising, especially as it started a year and a half after takedown. I have had a couple of scopes and biopsies which have come back normal and pouch looks fine, so my doctor doesn't think I have pouchitis or Crohns. I also had a barium meal with x-rays and there is no sign of strictures. I am presently on loperimide and recently started codeine and buscopan - slight improvement but lack of control still an issue. My frequency is ok at about 7-8/day. Don't know what else can be tried, any ideas??

I see my doctor in 2 weeks, not sure what he might suggest. Going back to an ileostomy has been mentioned as a possibility (even on a temporary basis) but I would like to avoid that at virtually any cost. Any thoughts or suggestions would be much appreciated. Thanks.

These J-Pouch's can be funny little buggers sometimes... Make sure the Dr checks for Cuffitis. The symtoms you are describing sound like Cuffitis.

Thanks for your reply. There has been no bleeding and from what I believe the way my surgery was done means I don't have a cuff so I'm running out of things to be wrong!

I'm sorry to hear you're having these problems. As inflammation has been ruled out and you have no strictures I wonder if there could be some wider issues such as irritable bowel syndrome. There is also a concept which seems to becoming more widely recognised of irritable pouch syndrome which might be worth investigating. If you've been suffering from a lot of stress then that could contribute. Alternatively, you might have developed some food intolerance that could be causing this.

How is the consistency of the stool? If it's very thin then that could be causing the problems and you may have some results thickening it with a fibre product and a careful diet.

I'd also think about trying something like VSL#3 as that may help.

Thanks Mike. I did mention the possibility of irritable pouch, although my surgeon thought it unlikely. The buscopan that i take is used in IBS and the cramps are a little less frequent but the control problems are still causing problems, usually in the evening and night.
I will try and look more carefully at my diet like you suggest. I have tried to stay away from too much milk.
I was on VSL#3 before so I think I will get back on to it and see if that has any effect. The stool isn't significantly looser, in fact seems to be as it was before I had these problems.
Thanks again, and I will try out these suggestions about the diet and VSL.