I read almost the whole thing and don't really see anything different than I've seen for 15 years. They are still saying to treat it with CIPRO and the other typical anti-biotics. I didn't read any progress in treatment at all.

Yes, quite true, Tyler. The most value with the article is the description of other maladies of the pouch and how they are different. 

Jan

hi  ty I cannot  find which article it is.. also how long is a course of c/f?? this is about my 3rd week and skin condition has improved somewhat(due to aquafor) but pain  awful still. when I take pain meds now many times I have to take benedryl for the itch.. not a good way to live I am glad I have this group

Palm, the link to the article is in the first post in this thread. Here it is again, just click on it:

http://www.cghjournal.org/arti...3%2900483-7/fulltext

Jan

ok ty

Jan recently posted a link to another excellent pouchitis-related journal article. Reposting it here so we can all find it again if we need tools to educate our doctors (or just for an informative read):

-----------------------------------

Jan wrote:

Here is a link to a newer article that describes pouchitis and other pouch disorders that mimic it. It is easier to read than the one I posted in the pouchitis forum, but it is still a clinical journal article.

http://www.ncbi.nlm.nih.gov/pm...bstractid963262title

------------------------------------

Thanks Scott. I also edited the original post here to include the second link.

Jan

The link in the original post by Dr. Shen is not working for me now. I replaced the link in the first post with a working one. Here it is:

http://www.usahealthsystem.com...icles/2014_01_16.pdf

Jan

Thanks for the article and the link, Jan. 

I got diagnosed with irratractible pouchitits in 2000. Tried every antibiotic, including Cipro, Every single clinic I went to. Remicade, entyvio, everything I tried. I had a fistula so huge between my Anus and Scrotum that when I got it lanced, the surgeon was legitimately concerned. I was getting abscesses lanced twice a month.

As of today I have been 90 percent better for 1 yr. Firstly and most importantly, my intestines were not absorbing the antibiotics. I randomly started chewing them into paste, Augmentin and Cipro, and my abscesses and pouchitits cleared up in 3 days. Dr Peter Rubin in nyc said "your intestines are comprised and haven't been absorbing the antibiotics for the last 17 years". Ha would've nice to think out of the box like I did, a little earlier.  My scope showed no pouchitits. Some tissue is still damaged where the abscesses were, but nothing is active. Unfortunately I do need to take these antibiotics every day but I am considering trying some other methods. I just don't feel, whatever is out there, is strong enough to kill What's going on in my pouch. Rubin said I had been absorbing about 10 percent of these antibiotics since 2000, because after the jpouch surgery, my gut just doesn't absorb certain things.

Simithicone... I take about 10 gel caps right before meals. It wipes out gas. You know that horrible cramping we get? That's from gas in the inflamed area sometimes. My pouch has trouble passing gas. I've heard other people do too. I actually can only pass gas if I'm lying on my stomach. Anyway simithicone(I feel like I'm spelling this wrong)  wipes that gas out.

I also use some other unorthodox methods. But science says whatever I'm doing is working. Please make sure you're digesting all your antibiotics. Take the liquid forms if you don't want to chew them up. If it doesn't help you within days, than I guess we all really have different causes for our chronic pouchitits.

If you decide to take your antibiotics the way I described (Cipro tastes terrible. Augmentin tastes not so bad) and you improve within days, please let me know? Dr Peter Rubin confirmed my pouchitits is non-existent. The reason is the fact my intestines weren't absorbing antibiotics. I am 90 percent better now. That should motivate people at least to look into this with your doctor. I could not leave my bed a yr and a half ago. I had pouchitits and rectal abscess. I go to the bathroom about 3 times a day now. I am on a strict diet. When I go to the bathroom, I sit backwards on the toilet. I know that may sound silly, try it. I believe my pouch empties 20 x better this way. When I'm having trouble emptying my pouch and what's backed up in my small intestine, I give my self a colocort, just to flush out my pouch. I don't know why the liquid in fleet enema doesn't work, but it doesn't. Sometimes I need an enema. Sometimes I do not. I do believe part of our problems stems from not emptying our pouches completely.

 

List of antibiotics I've tried (but not chewed in paste or taken in liquid form) since 2000: Flagyl, Cipro, Levaquin, Amoxicillin, Tequin, Zyvox, Xifaxin, Augmentin. 

After cultures were taken I was told Augmentin and Cipro. They didn't work until randomly, just as a hail Mary pass(I had just noticed that I hadn't digested spinach!) I chewed the antibiotics. 

I replaced the link to Dr. Shen's article, as it was no longer working. It is now a link to the PubMed abstract, and there is a link on the right that will take you to the full article access.

Jan

Stormwatch, what type of cultures are you referring to that indicated augmentin & cipro were (or were not?) working? I would definitely be interest in more info to determine which antibiotic help and individual and which are a waste of time.  Thank you!

Jan, thank you for the new link. I'm curious to know if you, too, could add to throw topic of antibiotic cultures. Thank you!

Starrynight, I am not sure what you are asking!

Jan

Jan, I was wondering if you had any info on a test to determine if a specific antibiotic is working for an individual or if enough antibodies had built-up in his/her system to render the antibiotic useless. Many people tell me that they know of someone else who was tested, but were never able to provide enough info for a successful Google search.

They can do stool cultures, but that is mainly for when there is a specific pathogen they are looking for. Pouchitis is generally not an infection, but an inflammatory response to normal flora bacteria. Cultures would not show anything unusual.

Fecal calprotectin is a test that helps quantify intestinal inflammation. This might be what you are looking for.

Pouch endoscopy can show visible improvement.

We do not develop antibodies against antibiotics, since they work against bacteria, not our cells/tissues. They can become ineffective because the bacteria evolve to become resistant to the antibiotic. This is a major problem with antibiotics in general and why there is a big push to reduce their use as much as possible. Overuse of antibiotics are responsible for the development of "super bug" strains, especially in the hospital environment.

Jan

I have been very lucky with my pouch, but 3days ago, I started having gas pains, abdominal cramps, and having trouble passing very much stool at a time, even tho I have urgency. From what I have read on the site, it sounds like possibly pouchitis?? My surgeon that did my surgery has passed away and his partners are  90 miles away, since this is a Friday night, if I go to ER, I wonder what my chances are to at least get a RX for Cipro, until I can get ahold of someone on Monday. My gastroenterologist that originally diagnosed me is retired and his practice is closed. I am a pharmacist, so maybe the ER MD would listen to me??? Vickie

Hello,
I'm new here, but have lived with an IPAA since 1990 after a short but intense 2-round fight with UC.  While I was a taekwondo competitor and master instructor, the UC cut my Olympic dream short, and eventually the prednisone ate my hip sockets, and one knee, ending my instruction career.  I sold my studio in San Diego in 1999, and found a job at the Olympic Committee in Colorado Springs doing some research and writing, mostly because it came with the insurance I needed to have my joints replaced.  And when that job ended, I went back to college, took a Bachelors in biology, a Master's in education and immunology.  I'm now in another Master's program at CU Medical School in biomedical sciences and biotechnology.

Anyhow, I try to get information that might prove helpful to fellow 'pouchers' primarily from the peer-review literature, which I'm, by-and-large, able to mostly understand.

Lately I've been sharing some recent work regarding what underlies pouchitis, which I get 1-2 times per year.  Fortunately 3-4 day of metronidazole (Flagyl) clears up nicely.  Regardless, I though I'd start sharing some of the research here, and I'm willing (at least while on break from school) to help explain the good stuff in fairly lay terms.  I'll also look up answers to well-formed questions anyone cares to ask me since I have institutional access to many medical publications through the university.
Cheers and thanks for letting me join your group

Here's a very good review from 2017, with I'm working on digesting right now!  
https://onlinelibrary.wiley.co...df/10.1111/den.12744

And here's one related to diet and pouchitis. If you don't have the time or the energy to digest this peer-review paper, I'll give the the TLDR [Too Long. Didn't Read.] version:
In a year-long study of 172 IPAA patients, ~31% of those with the lowest fruit intake (<1.5 servings/day) developed pouchitis. Of those that ate more fruit only about 4% developed pouchitis. The authors suspect changes in the pouch microbiome was the helpful factor, rather than fiber, as people who had high fiber intake from grains, rather than fruit, did not benefit.
A "serving" of fruit is considered to be 80 g or about 4 oz. The article did not specify which fruits might be best as the only variable was total daily fruit intake.
I don't know about you, but I've avoided fruit suspecting it might give me the runs, but this was not the case at all in this study!

Maintenance of a Healthy Pouch 

Bo Shen

If you had one article make it this 

https://www.sciencedirect.com/...B9780128094020000277

winter wish posted:

Maintenance of a Healthy Pouch 

Bo Shen

If you had one article make it this 

https://www.sciencedirect.com/...B9780128094020000277

 

This does look like an excellent book and an excellent chapter. Unfortunately the book costs $175 in hardcover and $120 in Kindle format. Each chapter costs $31.50 purchased individually. The book can probably be borrowed through a university/medical school library if you have access, but even then most will be using inter-library loan.

Yesterday, I requested a courtesy copy for author Bo Shen @Coloumbia for my personal use on non-profit social media.  He's never turned me down for academic papers before, and I hoping he'll be as generous with a book chapter.
Keep your eyes one here and on the FB J-Pouch Group for it should he approve.

I would be very interested in this, Steven!  I am an RN and work in Hospital Improvement Plans and would be VERY interested.  I was Dr. Shen's patient from 2007-2014.  He's amazing

I work in Radiology but book wasn’t available at library so bought it. Worth it! There is so much information in the chapter. A patient of Bo Shen told me that he gave it to him. 

ChelleH posted:

I would be very interested in this, Steven!  I am an RN and work in Hospital Improvement Plans and would be VERY interested.  I was Dr. Shen's patient from 2007-2014.  He's amazing

Maybe You should be asking him for the courtesy copy, then?