Dr Bo Shen now recommending hyperbaric oxygen chamber for pouchitis

I see Dr. Shen and he recommended HBOT for my chronic ischemic pouch ulcers. I did 40 1 hour treatments over 8 weeks at a private clinic that was only 1 mile from my house.  Unfortunately, the facility doesn't deal with insurance so I haven't had luck getting the $6000 reimbursed. I chose to do it anyway for the chance it would help, and chose the facility for convenience.  I was scoped shortly after I completed treatment and it did nothing for my ulcers.  Major let-down! Other things haven't worked for me either. I hope others have better luck with it.

Gojengo, what a disappointing tale! This is one reason I would not be interested in participating in someone's experiment, unless they were footing the bill, or there was preapproval for coverage. I am not poor, but I also don't have unlimited funds for unproven treatments. Then there is the time investment too. 

So sorry that you didn't get the results you hoped for.

Jan

I have not lost faith in my doctor.  There is still so much to learn about chronic pouchitis/ischemia and I am willing to try new things to put off surgery.  I have had my pouch for 19 years now, and though I am bothered by flare-up symptoms at times, I still feel I am doing better than a lot of people here. Just wish there was an easy way to make the IBD go away! Anyway, the time investment wasn't a problem, and I actually enjoyed each hour I had to myself in a quiet chamber watching a movie of my choice with no one bothering me.  A nice break for a busy mom, though I could have had more than 40 hours of a nice vacation for the price!

Absolutely! Dr. Shen has more experience and collective data from his pouchitis clinic than any other doctor I know of. His published works are great. He is always on the cutting edge. I definitely would trust his judgment.

Still, I'd be loathe to shell out $6K unless it was pretty much a sure thing.

Jan

Jen, I am curious how they diagnosed your chronic ischemia/pouchits? or I see now I reversed the order you originally wrote? I myself am presently managing what is presumed to be ischemia induced pouchitis from marathon training. in hindsight I can see now that my docs original admonition of my long distance running the day after running 17 miles for the first time in my life and a horrible pouchscopy was wisdom indeed.  my most recent scope which was about ten days after my completion of the NYC marathon confirmed what began to become apparent to me in September that I was having a training induced pouchitis issue that still linger to this day, although I have attempted to quell it with flagyl, xifaxin, and now budesonide.

Deweyj, mine is definitely not Training induced! While I Ran few 10k's a couple of years ago, I don't run any more. My ischemia was diagnosed by process of elimination. I have had pouchitis on and off since I had my first child almost 17 years ago. I have tried cipro and Flagyl, Cort enemas, humira, kenalog injections, and hbot. Nothing makes the ulcers go away for very long. They are always there at same place, though sometimes more wide-spread like an ibd flare.  Doc wants to try lysis of adhesions surgery next to save pouch. Wondering if going to ostomy would be better. 

I just tried to get 20 more sessions of hyperbaric after the first 40 didn't work, I'm a bit desperate, but it was not approved my insurance. My next step is another phone consultation with Dr Allison Siebecker who is one of the top SIBO specialists in the country and has a integrative approach.  If you want to check her out her website is siboinfo.com.

GoJenGo posted:

Deweyj, mine is definitely not Training induced! While I Ran few 10k's a couple of years ago, I don't run any more. My ischemia was diagnosed by process of elimination. I have had pouchitis on and off since I had my first child almost 17 years ago. I have tried cipro and Flagyl, Cort enemas, humira, kenalog injections, and hbot. Nothing makes the ulcers go away for very long. They are always there at same place, though sometimes more wide-spread like an ibd flare.  Doc wants to try lysis of adhesions surgery next to save pouch. Wondering if going to ostomy would be better. 

ah ok, thanks. I'm a bit curious as we've changed my dx to crohns, I get treated with crohns meds (Humira paired with Methotrexate) and I will admit that it did seem to largely address my pouchitis, this recent long lasting bout I can presumably correlate to my marathon training and can see how my first full marathon likely caused the similar issues. recently in convo with my doc I realize that none of the tissue samples have ever confirmed crohns, and reading on here recently revealed to me the dichotomy of some like me who amend their dx, and others who just stick with chronic pouchitis. long story I know. the whole ischemia issue is new though and still trying to get my head wrapped around it. thanks for the reply. and its interesting to me that you've used cort enemas as when I had a colon that was the most effective med (mind you that was 30 years ago) for me, so as ive had issues in my jpouch I asked my doc about using cort enemas and her reply was she wasn't adverse to trying it but since most of my issues relate to stricture tightening she wasn't convinced it would help.

as to going to an ostomy. I have been resisting that move for about 5 years. my doc argues it would improve my QOL but I'm not sold. that said some do seem to thrive and improve their QOL by doing so. I do believe that one day I may no longer have the choice as for the past few years I have had quarterly dilations of my strictures that have kept me from the seemingly endless obstructions that I had from same.

best of luck to you, I hope you find your happy medium.

Hi everyone! 

So happy to have found this forum.  I've had my pouch since the day after Thanksgiving 1991.

For most of these years I have only seen my colon and rectal surgeon to treat any problems I had as a result of the surgery. He never referred me to gastroenterology and the only treatment I had for probably 20 years was antibiotics.

When I started questioning him about other treatments he wasn't pleased. He did refer me to gastroenterology but the doctors there who were at the same clinic wouldn't do anything without first consulting him. The bottom line was I still was taking antibiotics. The long term use of flagyl cipro and there was another one caused me to have a terrible rash on my legs. In addition to the rash on my legs because of the itching around my anus and vaginal yeast infections I believed I had yeast inside my Pouch as well.

I decided I was going to take myself off of the antibiotics as I believed they were the cause of the diarrhea that I had been having. I had to take a couple of courses of diflucan as well as vaginal yeast infection cream around my anus as well as in my vagina To clear up the yeast.

Through my research I discovered that soluble fiber would help with the diarrhea. IT did. Make sure its not wheat based like What's in benefiber. I take 100% acacia soluble fiber. It helps a lot. I also take probiotics as well as peppermint oil tablets.

My anus was raw from years of frequent bowel movements. I just recently got some liquid lanolin 100% pure from whole foods and I have been putting that on my anus and just for two days the results have been wonderful. I feel my anus is almost healed up. No burning and itching anymore. It's a great barrier. But make sure to clear up any yeast before using such a barrier.

My doctors are all mad at me because I stopped taking the antibiotics and I declined to take Humira and the other drugs they were trying to give me because I did not like the side effects.

also i got a bulb syringe and started flushing my pouch  with 100% organic aloe vera in distilled water. Please be sure not to use tap water because it has chlorine and bacteria. Only use distilled water in enema.

I feel so much better And I'm not taking any drugs. My experience has been the drugs don't help or give you something else to deal with. 

Good luck to all of you! The past 25 years have been mostly horrible dealing with Pouchitis. 

This year has been the best ever. I just changed my insurance to Humana so that I can see a doctor at the Cleveland Clinic for anal fissures. I hope they can be treated without losing my continence.

God bless and I will read your comments! 

Jo 

How does flushing your pouch and using with aloe vera help you? thank you.

Hi boys mom. It's  hard to explain but when my pouch is irritated it feels leaky and my anus burns gets sore and itchy. The aloe vera enema flushes out whatever is in there causing the irritation, it's usually not stool, and soothes my anus and the inflammation in my pouch clears up.