For those of you who have a j-pouch with frequent output and pain, there is a new unconventional drug used. It is called nortriptyline and is actually an anti-depressant, but it "tricks" your brain into not feeling pain. You take a very low dose (10-20mg) and it has very few if any side-effects. It will allow you to actually sleep at night and you can toss away all of those "sore butt creams" from going to the bathroom so much. I swear by this medicine. It has given me my life back. If you are in the Cincinnati area, a great GI (DR. SCHMULEWITZ) is at University of Cincinnati. He will work with you to figure out how to get your life to as normal as possible with a j-pouch.
Just had to share the news!
email me at j4e4c4@hotmail.com if you have any questions

Great news for you J! There has been a lot of information on this site in the past few years regarding IPS (irritable pouch syndrome), which is felt to be similar to IBS. You have symptoms similar to pouchitis, but without any endoscopic evidence of any pouchitis or cuffitis. Antidepressants (there are many that are used for this effect) are commonly used, along with antispasmotics. Cleveland Clinic Ohio did some research in this area a while back. It is now thought that many of the reported cases of pouchitis really were IPS. This is why scoping is necessary when you have repeated or chronic symptoms of pouchitis. I hope this treatment works for you long term.

http://www.ncbi.nlm.nih.gov/sites/entrez?cmd=Retrieve&d...003434&dopt=Abstract

Jan

This is good news. I am pretty sure I have Irritable pouch syndrome and will be asking my medical team about treatment for this next week. Despite numerous tests which have ruled out pouchitis,crohns, stricture I don't think they are aware of IPS otherwise I'm sure they would be treating the symptoms as this.
Do you take an anti-spasmodic drug as well?

My doc has started to talk about IPS for me...he really has no answers or anything else. he ruled out pouchitis and all the like. I have been in the hospital 2x in the last 6 weeks for dehydration from the diahrea. I have been on nortriptylin for over a month and also on Librax (another antidepressent) I am having no results from these. I am getting nervous, I saw a new gastro and he said I need to talk to my surgeon about a "failed pouch" I refuse to believe it. I have an appointment on Friday to talk about my options)