I am 28/yo male with what may be IPS. I had UC since I was 15, just over two years ago I had my entire colon removed, and had an ostomy for three months. Then I had that taken down and now have a J-pouch (I have had many complications), but got over most of them. Now I have what was thought to be pouchitis, but recently my doctor said it is irritable pouch syndrome (IPS), I have tried five antiobiotics and a few antispasm meds with little luck. I am still getting up a few times a night and having 10+ bowel movements daily. Just wondering if anyone else has had this or has any advice in how to deal with it. Thank you.

One of the main treatments for IPS is antidepressants. The other is antispasmotics. It does not appear that you have been on antidepressants. This is not for depression, but to alter your brain's perception of your gut activity, so you feel less pain and urgency.

Jan

Actually I have been on the for a week. Just one right before bed along with a sublinguial. Again with no help. Have you had this and did it work? Thanks for your imput, I really appreciate it.

What antidepressant are you on? Also, I'm not sure if antidepressants work the same way (time-wise) for IPS as they do for depression. It can take up to 6 weeks for the antidepressant to kick in. I also recall that there were a few antidepressants that worked better for IPS than others. So if this one isn't doing anything after giving it a chance, try another one. There's a chance antidepressants won't work for you, but you don't want to give up after trying just one.

I hope you get to the point that you'd like to be.

kathy

I have had these symptoms and have had scopes, biopsies and x-rays which have ruled out inflammation, crohns and strictures. IPS has never been mentioned by my doctor and although my symptoms tick all the boxes for it, I don't think they are aware of it's existence. I will mention it at my appointment next week and let you know if the treatment works.
Also, there is a post in the 'general discussion' area titled "miracle drug for pain and reduce BM" posted by j4e4c4 which you may find interesting to read.

I can't remember the name of my med off hand, but I will check it out and see if you have heard of it. In th epast with in 4-5 days I have always been able to tell if a med is going to work, so usually get discouraged after a week with no relief, six weeks seems like forever.

Just last week was the first I have heard of IPS, they have done multiple tests, CT scans, x-rays, etc. to rule out crohns, and I took a bunch of different antibiotics for pouchitis with no results, so they think it is IPS.. Usually my puchitis clears up quickly with antibiotics.

Have you thought about looking into whether it's a food allergy? I have an ileostomy, so it's different for me, but I seem to have watery output any time I drink caffeine, or when I eat pizza. So I stopped both, and it's a lot better now.

When I asked my doctor about it, he said I probably had IBS in addition to the Crohn's/UC.

The antidepressants used for IPS are usually the tricyclics (not used for depression as much anymore as the SSRIs like Prozac are the first-line therapy) - amitriptyline, nortriptyline, etc. They are also used at a very small fraction of an antidepressant dose (similarly used for things like migraines, neuropathic pain, etc.) They can take many weeks to start working so give them some time, however you can probably also increase the dose (per your doc of course!) if it isn't helping as again, these doses are a small fraction of an anti-depressent dose. And yes, if one doesn't work you can try another. Our doc says he thinks nortriptyline works better for IPS than amitryptiline, but I have heard other docs say the opposite, so I am sure it is very individual as with many meds. My husband has pouchitis and IPS - double whammy - so it is hard to tell what is helping. He started at 10 mg/night of nortiptyline and has been slowly increasing it. Do keep in mind however that these types of antidepressants can cause fatigue and dry mouth, two things you're probably already suffering from! So be careful to stay hydrated.

The antispasmodics can also help a lot. Which are you taking? I believe you said one at night and sublingual so it does not appear that it is one of the long-acting ones (which I think may not work anyway with people with pouches). Have you tried taking the antispasmodics more often (e.g. a few times/day)? I know these really help me with urgency when I have a UC flare. My husband says they make him tired though so you would have to see how this affects you.

Also, you mentioned a bunch of tests but were you recently scoped to definitely rule out pouchitis? As I said, my husband has both pouchitis and IPS - only a scope will tell you for sure. Just because you haven't responded to several antibiotics doesn't mean it's not pouchitis. It could be that they haven't found the right one or the right dose. My husband has chronic pouchitis and has over 10 BMs/day, urgency, etc. even on antibiotics.

Best of luck to you!

Prof Quigley and Prof Shanahan in University Cork (previously UCLA) Ireland both do alot of research on probiotics. They have done the first complete clinical trial on porbiotics and have published their findings in lots of prominent medical journals. The probiotic is called Align and made by proctor and gamble and available in the States. They recommend it for irritable bowel and irritable pouch syndrome.