I always turn to this site for advice, so I figured it was about time to start posting Smiler I had a rough month with my pouch, which just turned 8. Stricture, enflamed skin tag, and pouchitis to boot. I seem to get pouchitis every 3-4 months, which my GI says happens. Augmentin stopped working for me, so we used Cipro this time. It took a little longer to work, but after 5 days I felt like, well, I always do on the meds - NORMAL. HEALTHY. Sleeping through the night, going hours without need to go, having a blissful week. But I finished the meds on Wednesday and already I'm noticing more frequency and different textures. I feel like this always happens when I stop the meds - back to my "normal", which is not nearly as nice as when medicated. But then again I have no colon - I'm always going to have more frequency and ever changing bowel habits, right? It's just always been curious to me that I'm never as good as I am on the meds...

What am I getting at? Well, I guess I'm wondering if anyone else has this almost immediate post-antibiotic regression? Is this normal, or could it possibly mean there's still some inflammation? And what should my "normal" be anyway? Also, I'm wondering what else I can do to healthy-up my pouch. I'm really committing to the low residue diet; I'm already gluten free and low dairy and just started up with probiotics again. But what else??? I want to limit the need for the antibiotics as much as possible - don't want them to lose effectiveness!

Thanks everyone Smiler
Original Post
You may have what is called refractory pouchitis which means it is not cured with one course of antibiotics. I have had chronic "simmering" pouchitis which has been treated with antibiotics for 20 years. If I go off antibiotics I invariably deteriorate within 10 days and have to go back on. The pouchitis has never been stamped out by antibiotics, it has been merely kept in a "simmering" state according to my GI. I suppose without antibiotics it would be "boiling" in 2 weeks.

I rotate cipro and flagyl, xifaxin and augmentin. All work to varying degrees although lately I have had to increase dosages.
CT, I am curious,have you tried biologic's yet ?
What is your opinion of biologic's vs long term antibiotic use ?
I'm about to go on Humera for the reasons you both listed.
quote:
What is your opinion of biologic's vs long term antibiotic use ?


I was told by multiple GIs that biologics are the LAST line/last resort of treatment. I have not gotten there yet and to directly answer your question, I think long term antibiotics, if rotated and used carefully, are safer than biologics.

Long term antibiotics have always worked in my case to keep pouchitis in check (if not eliminating it), so you don't go to the last line of treatment unless everything else has failed. So as long as the antibiotics keep working I am not going there. But if the choice is biologics or losing the J Pouch and going to an ileostomy, I will choose biologics.
Last edited by CTBarrister
Thanks for responding! So you are on antibiotics full time then? I've heard this can happen. I see my GI for a scope in a month (to see if the stricture came back - I always seem to have them and last time was the worst, so we're starting to flirt with the idea of some sort of pouch adjustment? not sure of details), so I can ask him about the idea of more intensive antibiotics then. Plus we'll get to see if there's still inflammation. In the mean time I'm going to be really careful to avoid my "trigger" foods (chocolate, excessive sugar, gluten, dairy) and stock up on probiotics. My doc has never mentioned humera or anything like it - I was on remicaide when I had UC and wouldn't be opposed to an infusion if it works, although it is time consuming and would be difficult to schedule during the school year (I'm a teacher). Ugh I don't know. I feel like I am so much healthier than I was with the UC, but at the same time I feel like my GI tract has a long way to go.
quote:
So you are on antibiotics full time then?


For 20 years now, except for very brief and unsuccessful hiatuses of no more than 7-10 days here and there when I tried probiotics exclusively. I do take VSL#3 DS between antibiotic dosages on the theory that it needs to build up over time before I go off antibiotics cold turkey onto VSL#3 DS, and we will see if that theory works.
I'm also on antibiotics full time. They're used to treat pouchitis that just won't stay away without them. Treatment of persistent stricture is generally a bit different, depending on what's causing the stricture. I've seen dilations or surgery mentioned more often than medication.
Thanks again everyone! I don't think my GI is big on the idea of full time antibiotics, at least not yet? It's never come up before but I'll talk to him. If I still feel off in the next couple of days I'll call his practice and see what he suggests - maybe I can get another round.

I tried VSLIII at one point but don't remember having a good enough reaction to justify the cost. Then again, since that time I cut out gluten, went low dairy and low residue and those have all made big impacts, so possibly the VSL would work again. Is it still prescription?
VSL #3 comes in DS (double strength) form by prescription only, but is over the counter at lower strength. The retail price of the two is about the same for truly comparable doses. If your insurance will pay for the DS form it will save a lot of money.

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