Chronic Pouchitis

Why can't you stay on low dose antibiotics? I and other members on the board are on these due to chronic pouch issues. I have been on and off cipro for over 2 years and no one has told me I need a perm ostomy at this time. If they stop working then that is another story. There is also 6 mp and biologics you can try before exhausting all medical options. How disabling are your symptoms? Also, you can try VSL 3 DS if you have not already. Some people have success with this.

Other options are: numerous other antibiotics besides cipro and flagyl; rotating the antibiotics (I would try xifaxin); Entocort; dietary adjustments; and biologics (Remicade, Humira etc.) which are thought to be a last resort. It is not just cipro and flagyl or lose your pouch.

I have had pouchitis chronically since 1995 and have treated it successfully with antibiotics (currently rotated at low maintainance dosages on a weekly basis with lactulose, a prebiotic), dietary adjustment (removal of carbs and sugars) and this has kept the pouchitis in a mild "simmering" state.

What you are being told is pure BS, you need to experiment with all of the above and see what works for you. Trial and error.

I haven't had much support with options which is why I came here hoping for alternatives. The plan I had come up with was an ongoing antibiotic treatment, vsl3 and scd diet(reducing the amount of carbs and sugar I eat) I thought that was a pretty good plan. My dr said that long term antibiotics would not be good for me, vsl3 is not available in australia (myself and the hospital pharmacy tried to locate it with no luck apparently it is not being manufactured over hear anymore) and that my best option was the ostomy. I think I am going to fight it and ask to do my original plan. Do you know if there are any alternatives to the vsl3?

Also my symptoms fluctuate I may have mild symptoms with only 10 bm's a day but then it gets worse going 20 with bleeding, pain, leaking and urgency. All bm's are a very watery consistency. My biggest problem that is ongoing is my fatigue.

Lexi,

I have been on antibiotics for 18 years and the only issue I have had with them is that if I am on one antibiotic for too long without rotating, it loses its effectiveness. I have also been prone to yeast infections taking higher dosages of cipro and flagyl, but this susceptibility was decreased by taking various actions like rotating and keeping the effected body parts dry and powdered. Doctors are always going to be skeptical about long term antibiotic use but I have not had any problems beyond the ones I mentioned.

My GI told me it is pointless to take VSL3 with antibiotics as the antibiotics kill the VSL3. I did try VSL3 cold turkey and it did nothing. IMHO for me VSL3 was an expensive and useless placebo.

The plan you outlined is otherwise a reasonable plan and I think you should give it a try and see how you manage things. Pouchitis treatment is generally trial and error and the burden is on you to tinker with things and see what works what doesn't. My surgeon once commented that a pouch is like a Jaguar (the car), meaning it is very high maintainence and frequently in the garage for tuneups, so you have to be a good mechanic or have a good mechanic or both.

Good luck.

Thank you so much, I am very grateful for finding this forum and getting your advice

Lexi,

I was more concerned about long term antibiotic usage than my GI was. Small doses if you can manage (like 250 mg cipro X 2 daily) or even every other or third day dosing may lessen the risk of long term use. I made my mind up that it is worth the risk versus having more surgery as I am 50 and do not want an ostomy (at least not yet) if I can help it. My issues however have not really been pouch related as they are more anal related with ALOT of pain, burning and bleeding at times. The cipro seems to thicken my stool and eliminate the rectal pain that may be caused by infection from the bacteria and open ulcers (chronic cuffitis) in the anal canal. I get similar symptoms as you are describing when my cuffitis (and pouchitis) are in full blown mode.

Lexi,

Don't get too discouraged! Many of us manage chronic pouchitis and lead very normal, healthy lives without a need for a permanent ostomy. Personally, I managed chronic pouchtis for a couple years on Cipro and Augmentin. Then I found Pepto Bismol, which has had me off of antibiotics for most of this year. I have decreased my sugar intake and take PB twice a day. I still do get pouchitis flares now and then, but I usually avoid the antibiotics. There are so many other antibiotics as well as other options that can work you. I defintitely do not think you are anywhere near the point of retiring your pouch. You'll find something that works for you :-)

While on this subject does anyone Think 6 mp or biopics will help chronic cuffitus? Rectal meds Bd and cipro not helping with the cuff bleeding.

Lexi, if you can find a doc who knows how to read (and practice medicine) they can educate themselves about "antibiotic-dependent pouchitis." In all seriousness, if you can switch doctors you're likely to do better. All things being equal I'd recommend a GI over a surgeon.