Well, Happy New Year to me, Happy 5 year pouch birthday (today)to me. I am so bummed out. My second remission is down the tubes. Pentassa not working, VSL not working, ginger supliments for inflamation not working, fish oil and all the money spent on organic foods-not working. Back yesterday on xifacan and canasta. What really bothers me is that this time it came on quick and strong. The last time I took xifacan it worked almost immediately. Today I still don't feel right. Although the bathroom trips have decreased, I not hot and cold and sleeping all day, I still have pelvic and anal pressure. I am so worried that this might be something else. For all those that don't know my story I had a pelvic infection after pouch formation. I do not have a cuff as that was stripped in another operation after UC returned there. Do your pouchitis attacks come on differently each time? That's for listening.
Susan

Susan,
Sorry to hear about your struggle with this. I'm in the same boat- every time I think I have it all figured out, everything changes.

Is there any chance that you have that nasty-ass cold/flu that's going around? I know we had literally 1/2 the office out today sick with it, and it seems like everybody I talk to all over the country is either just getting over it, or is currently on their back with it.

//Todd

This message has been edited. Last edited by: ToddL,

It could be a stomach bug....

Not a stomch bug. I can feel the inflamation in my pouch /pelvic area and anal area. Feeling a bit better today but still not great. While I was in the Helath Food Store the other day I was reading the holistic books about colon health and one recommend a enema of pro-biotics. Has any would else heard of this and might have tried it?
Susan

If you're managing to keep a significant period of time between pouchitis flare-ups then that's certainly nothing to sniff at. Personally, I'd be pretty happy with that as it would be real progress. How long is it since your last flare?

On the probiotic enema point, I understand from my consultant that his team were experimenting in "refractory" cases with yoghurt enemas! Not sure about that one myself - at least you wouldn't care if the shop wasn't stocking your favourite flavours. Unfortunately, he didn't tell me how successful they were.

Hi Mike,
This is about a 4 month remission. My first remission was a 1 1/2 year.
I just spoke with my GI and here is the "new" plan du jour! I am to up my Xifican to 5 tablets 2x a day, Pentassa 4x a day same, up my vsl to 2 x a day, and canasta. I asked her about the yogurt enema's and she was like I know of it but have no idea how to perscribe it(ha ha what flavor would you like) and how did I know about it. I told her I read a book about it in the health food store and could I make it out of vsl? I guess I could just disolve some vsl in water and squirt it in with an empty enema bottle? (I'll have to go back to the store and reread this) So she was like go for it so I am. Hm.. I think I remember a while ago about someone on the board that does this. Maybe I'll repost this question on discussion.
I'll let everyone know.
PS For anyone reading this the increase in xifican is only for about a week-no longer.
Susan

This message has been edited. Last edited by: AllyKat,

Hi all...I just had my 1st and 2nd surgeries in March and in April. Since then, I have had pouchitis every month. At first Culturelle (probiotics) helped, but they don't seem to help as much anymore. My GI doc has put me on Cipro each time, which works great, but the pouchitis returns a week or so after the course is finished. What other types of probiotics do people recommend? Also, I'm not sure if this has anything to do with pouchitis, but nearly every night I wake up in a drenching sweat. Does this happen to anyone else? It's getting ridiculous!

The night sweats chould be but also are you going thru menopause or peri menopause? I started getting nights sweatws around age 39.
You might also want to try VSL#3. I find them more powerful than culterelle's. My GI told me today to up my dose to 2x a day. I may up them more. After my first pouchitis attack 4 years ago I was on 3x a day for a few months. I give culterelle's to my non UC kids after antibiotics.

I hope I'm not going through menopause, I'm only 24!! haha. Thanks for the advice...I'll try the VSL#3

My husband was taken off of VSL#3 and put on Flora Q which is much less expensive, in pill form, and available in the pharmacy without prescription. He also had read about probiotics "enemas" and the person was filling gel capsules that you purchased at a health food store and filling them with VSL#3. I think it was on this website...you might want to do a search. (He never tried it)
Best Wishes!

I think the VSL suppository post is older and may no longer be available here. But I recall what Lisa recalls - that the VSL#3 was put into gel caps and inserted. The person who initially tried this said it had turned things around for him. I don't know if anyone has saved that thread but Dave H might have it.

kathy