Help please

To keep my pouchitis under good control I've had to combine two antibiotics. Cipro and Flagyl are now doing the trick for me, along with maximum doses of VSL #3 DS. I don't know what antibiotics you've actually tried, but if your doctors skipped rifaximin it might be worth a go. Some people get real benefit from an extremely low carb diet. It's probably worth a try, at least for a few weeks.

 

(Edit) Also, have you been tested for C diff?

 

You may have more than one thing going on - the external irritation seems like something else (e.g. a fungal infection due to the antibiotics).

 

Good luck!

 

Okay thank you scott

Stellababy, if you can't communicate with your doctor you'd be best served by finding another one. You don't need a surgeon to manage pouchitis - a good gastroenterologist might even be better. I have no idea if popping the occasional Flagyl dose will do you harm, but it's not how I'd recommend managing pouchitis. In general, 10 days to 2 weeks of Flagyl or Cipro seems like the most common treatment, though the doses seem to vary a bit. 

It seems the problem with using antibiotics is that they kill the good bacteria we so desperately need, as well as the bad.  My husband has had good success with taking Braggs brand apple cider vinegar (has to be unfiltered not pasteurized) which aids his digestion before it reaches his pouch. I joined this group to see if there were any long term members who might have food/diet charts or recipes that I would be able to use for him. He is currently still in the hospital after being admitted Sun night.  He had been lucky until then, (6 years!!) with no pouchitis, but he def has it now-I have spent hours reading medical journals, studies, etc.....2 things I suspect played a role in  bringing this on: he had been taking 2 Aleves/day(causes ulcers) and 2 courses of antibiotics.

Hi scott
I don't have pouchitis
the reason I take the flagyl is for loose stools and it helps not getting up so often during the night

 

Yep. My surgeon and GI both say avoid NSAIDS as they increase pouch complications for strictures and pouchitis. 

I prefer Lomotil (or Imodium) to make sleeping through the night easier. I wouldn't use occasional Flagyl for that purpose (though I do unfortunately use Flagyl every night to control pouchitis).

thanks ill try that

@ Ryan-

Is it possible to get your GI doc to admit you to the hosp and set up IV fluids so you can get a bowel rest, and they can also do a scope of your pouch? This put my husband back to "normal". He was not allowed anything by mouth-not even water though, for 2 days. With IV pain medication, he was not miserable like he was (and sounds like you must be!!). No one can function like that. The pain would be from cramping, but itching is likely to be an overgrowth of candida, which is a yeast we all have but it can take over if the balance is upset and to "starve" them you would need to not eat carbs or sugars. Have them test for it.  So sorry you are going through that---

 

Dawn

 

@ Ryan-

Btw, forgot to mention that if they determine you have an overgrowth of Candida, they may suggest taking a systemic anti-fungal med like Diflucan. It is a very, very, strong medication that can cause liver damage so I would suggest getting to the root cause of your gut biologics being off-- not enough good bacteria? were they recently killed off by antibiotics? Is your stomach acid high enough?

It has to be high enough to facilitate digestion and signal your stomach to release enzymes) If it never reaches the correct level, our food is not digested and becomes food for bacteria that in turn creates bloating, pain, and leaky gut. Essential Enzymes have really helped my hubby. He also takes a small glass of water with 1-2 tbsps of Braggs apple cider vinegar. I swear he's like a new person! Pls keep us posted....

Dawn