Hey gang!

A very long time no hear! Sorry I've been absent, but I run a j-pouch facebook club, so it keeps me really busy, however, I have only a few hundred members, and I have a major problem I'm hoping you can help me with. As some of you older members know, I've been on this site for many, many years. Unfortunately, over the past 2 years my pouch has steadily gotten worse and worse until I now expel nothing but brown water and a little blood. I had a scope done about a month ago, and discovered 7 dime sized ulcers, but we don't know what's causing them, or what can treat them. In the past year, I've tried Entocort (sp?) orally and enema's, Prednisone, 4 different types of antibiotics, and 2 different probiotics, yet nothing works! The steriods made me feel horrible as I also suffer from chronic anxiety disorder, which just made that worse, the enema's were useless as nothing will stay in me for more then a few minutes, so I'm at my witts end. Not sure what to do, and my doctor doesn't either. I have suffered from chronic pouchitis since I got my pouch in 1991, and I could deal with that, but this is something I can't deal with. My only option left is a pouch revision, but can't find any info on line about it, but I'll only consider it if it can offer hope for a healthier future. I know no surgery is perfect, and there are always risks, but if it can help, then I'm all for it! I haven't talked to my doctor about this yet, I really wanted some realistic feed back from you guys first, especially from anyone who has had this done. Please, if you can offer any advice, I'd greatly appreciate it!! thanks guys,

Cheers,
Eric

PS - Since I last spoke on this board a few years ago, seems the 6 years of prednisone (taken from 1990 - 1996) is finally taking it's toll, I've been diagnosed with Chronic Anxiety Disorder, Systemic Osteo-Arthritis, Osteoporosis, have had surgery on both shoulders (rotator cuff decompression due to arthritis), hypertension, kidney stones (due to high calcium intake to counter-act the osteoporosis) and chronic migranes, what's next??

Hi Eric,
Welcome back but I would have prefered better news from you...I won't preach or give any 'medical' advice just a maybe sort of suggestion...get off of everything and scratch everything that you eat...try an elemination diet...(not that you probably need to loose any more weight)...pick one neutra food from 1 food group (I usually start with chicken breast) and stay on it for a couple of days to see how you do and then slowly add another food from the same group for 24-48hrs...keep a close watch on your reactions and a good food journal while doing this...if you react well to a certain food, then keep it on the list, if you find that you are having an adverse reaction to a food then cross it off of your list...do NOT mix foods at the same meal...stick to mono meals..this can be very boring and I am really sorry but it can provide some relief and a sense of control over some of your symptoms...it is not a cure for anything but a detox that can help you to determine which foods are a natural irritants for you and which work well. Don't forget to mark down what time you eat, with what (liquids? Drinks etc) and any meds you may be taking while eating (they may cause other side effects)...keep it as bland as possible for a while but do not neglect the salt...if you are running with brown water then you need to kick up the minerals.
PM me for suggestions on tips of how best to do this and how to measure the results...my doc made me do it when I was a teenager and I periodically do it when my system is out of balance and going nuts.
Good luck, I am sure that the others will have much more concrete suggestions for you.
Sharon

I must admit you are braver than I taking all those drugs and dealing with chronic pouchitis for 20 years.

Like Sharon said, I'd start with a very bland diet. In addition to probiotics, psyllium a prebiotic may add some bulk to your stool. I also found with pouchitis a nightly ritual of a warm water enema has helped clean the pouch not giving the bad bacteria time to wreck havoc.

I've had chronic pouchitis for 2 years and that was enough for me, joining the ostomates soon.

I don't have much advice, but just wonder why they would even consider a pouch revision when you have suffered from pouchitis for 20 years. Seems to me that going to an ileostomy would be recommended. Some of your problems you have now may not be related to the steroids, but to the pouchitis. Pouchitis can cause all sorts of problems that would seem to be unrelated to it. (such as arthritis)

How you tried sulphur? If you are not allergic, it might help.

I too have my pouch for a long time (since 1984) and I also require a pouch revision / reconstruction.

The problem I face is finding a surgeon who has experience in this type of surgery. In Montreal (where I live) they are no experienced surgeons for this type of surgery. I am forced to go to Toronto (300 miles away) in the hope of finding someone competant. Currently, I suffer from continuous nausea and stomach pain.

I too have had problems finding information on pouch revision surgery except that this is the recommended course of action in my case.

Please feel free to im me and we can take this discussion off-line.

Thanks,

Solomin