Pentasa enema?

I thought bleeding came from cuffitis, lesions, tears, hemorrhoids and things like that and NOT from pouchitis.

No one has prescribed any kind of enema's for my cuffitis or pouchitis. I've taken canesa and anucort suppositories for cuffitis and antibiotics for pouchitis. I also take probiotics for pouchitis prevention and s.boularii for c.diff prevention. I've had c.diff several times since getting my j-pouch. Because I've had c.diff I can't take cipro for pouchitis so take augmentin. Flagyl works but I don't feel too well when taking it.

I wish someone would do a pouch scope and take biopsies from your cuff and higher up in your pouch plus look up above your j-pouch to make sure your small intestines are looking well too.

We all have mild inflammation in our pouches and it is not pouchitis. I was told this by my Mayo GI and Jan Dollar has said this as well. I don't know how much experience your GI has so maybe she can consult a more experienced GI over the phone or do some research on her own.

Please look up PlantFusion protein mix and see if you think that is something that you think might help you with your protein problem. My nutritionist put me on it right after my surgeries and I love it so usually have a fruit smoothie made with it daily. My BFF uses it to and she has Celiac. It is hypoallergenic for nuts, soy, wheat, lactose, etc. and very easily digested plus furnishes 43% of the daily required protein and is all plant based and is good for cell repair. It's how I get in most of my fruits and vegies. I've added fresh spinich and/or carrots etc., plus a banana daily with whatever fruit I'm using.

I hope you find relief soon!

That's the thing - I've had 2 pouch scopes this year + biopsies, and an MRI enterography. Yes there is inflammation, but I've been told twice that I don't have full blown pouchitis. It's just getting so frustrating to feel like the approach being taken is "well let's try this and see if it helps" but I really don't have answers. Meanwhile, my own GI has left the country and I'm being ping-ponged around throughout the department. The GI I saw today was just filling in for the IBD clinic, though he works with the head GI - who will become my new GI (and who I have yet to see but am hopefully going to see very soon). He is actually supposed to be one of the best in the province.

Sorry if the above was a little disjointed; my head is still spinning for all this.

Here in the U.S. mesalamine enemas are sold under the brand of Rowasa. I think they are fairly common and still prescribed, especially for proctitis or left sided UC. I was on them before my surgery, but that was a loooooong time ago.

I should imagine your pharmacies can get them, but just don't have them on the shelves. But, I agree that assuming the bleeding is from the pouch doesn't make a whole lot of sense. How about oral Pentasa, which would treat the whole small bowel?

Jan

quote:

How about oral Pentasa, which would treat the whole small bowel?

Exactly. When he mentioned Pentasa I initally thought that was what was being prescribed, and then he mentioned enema which completely confused me again. When I still had my rectum I had entocort and cortifoam; made sense for an enema then because the rectum was all that was left, and since it was disconnected an oral med would have been useless. If nothing else, the Pentasa enema may take care of some of the inflammation I have in the pouch. I'm skeptical it's going to completely take care of the issues I'm having, though. Having to see different doctors isn't helping. I'll be relieved when I can finally get back to having ONE GI, rather than being seen by a different doctor each time I go to the clinic. I'm convinced that is half the problem here, in as far as coming up with an appropriate treatment plan and course of action.

The pharmacist I spoke to said she'd have the ememas in for Tuesday, a bit slower than usual since it's the long weekend.