Hello Everyone...I'm a long time reader and pouchitis sufferer. I've tried most of the traditional treatments and meds...with poor results.

Starting next week I'm going to be participating in a study at the Cleve Clinic, using "super charcoal" - ST120. ST120 has been used in Japan, to treat cancer and is not FDA approved. This month-long clinical study is being funded by the clinic and not a pharmacutical. There will be twenty participants and no placebos will be administered. Participants must be off any antibiotics and probiotics, for two weeks prior.

I'll update this string on a weekly basis, with specific progress. Wish me luck.....

I DO wish you good luck! Buckets of it
Hope this proves to be your cure

Interesting. Keep us posted.

Hi G-Man, I just got back from Cleveland Clinic the 21st for my first diagnosis, after takedown 2 years ago, of chronic pouchitis. I was diag last week by my local surgion here in Akron after a scope. After reading information on this website and reports by Dr Shen, I requested my local Surg to scribe me Cipro. Dr Shen scoped me on the 21st and the Cipro, after 8 days, showed much improvement. I wanted to be included in the ST120 but since I was already on Cipro and it was helping, I wasn't a candidate yet. What a great opportunity for you! Only the Mayo and Cleveland Clinic offer this trial in the US. I had been diagnosis before my Jpouch in the past with Crohn's/Colitus. There has never been proof that it was Crohn's from the my past or current path reports. I was fearing that I may have been Crohn's of the pouch, but at this time it seems to be pouchitis. My therapy is to finish my 2 weeks of cipro and try to use Xifaxan or try VSL#3 while in remission. Any ideas? Do you have pouchitis or Crohn's of the pouch? Thanks, Jack's Tracks

Hey Jack,
I've been seeing Dr. Shen for a couple of years now and have tried various meds. He was about to get me started on Remicade, when this study came up.

Actually I've been diagnosed with both pouchitis & now crohns. Like most people here...just looking to find a better QOL.

Regards,
G-man

Hey G, How did he diag the crohn's. Was it by the way the ulcerations looked or a biopsy? Are your ulcerations going away from your pouch up around the afferent limb area, or even up higher in you small intestines? Even though every one is different, I'm just wondering if I am just getting the begining stages. I think that there aren't even names yet that describe what exactly we have do that the jpouch hasn't been around long enough to have a long track record. Tracks

hey guess what g-man? i'm going to be in dr. shen's pouchitis study too i'm scheduled to start the study on the 13th of april. then it's about 4 months on the meds and then they'll do another full assessment. dr. shen told me that if the charcoal works really well he is going to try to get the drug for us until it's approved by the FDA for our kind of problem. that's pretty cool! you'll have to keep a posting of how it's working out for ya.

Hey Mara,
Saw Dr. Shen and his assistant on Monday. Got scoped, some blood work done, and got started on ST120. So been on a few days without any noticeable results. Hopefully in a week I'll have better results to share.

See you're going to be on for four months? Did you mean four weeks?


Jack,
A biopsy confirmed Crohns, a year ago. Interestingly there was no visible sign of Crohns on this scope. More biopsies were taken.

Regards,
G-man

Hi Everyone,
Been on ST120 for 10 days. Sorry to report no improvement at this time. In fact the urgency & night accidents has increased the last few nights.

Gotta keep thinking positive!

Like you said stay positive. It's new to your system. It may take some time. Take care, Jack

Best of luck and keep us posted xx

Beginning my fourth week on ST120 and the results so far have been disappointing. Will be getting a scope next Monday, to assess any improvement...

Thanks for keeping us posted. Let us know how things go after your scope next Monday. Hope it's better news. Jack

I hope that study goes well becasue i'm looking for some new treatments to try. I've been on the lookout for new ones lately.

Well the results are in and I didn't do so well. Scope showed no real improvement. Hopefully others will have better results....