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9 replies

possible pouchitis (infection?) | Entocort

Silver20Silver20Member
So I've went and had a pouchoscopy (had to change GI's) and unfortunately the news wasn't to good.

We found a ton of ulceration's and inflammation in the jpouch and a moderate amount about 8-12 inches up into my small intestinal track.

He says (possible chronic pouchitis) because he thinks theres a chance it might be some kind of infection. He took a lot of biopsies and we're waiting for the results.

He already laid out a couple treatment plans and I'm suppose to decide once the results are back what I should do.


1.Due to the little effect the antibiotics had, he wants to (reset) my immune system so it'll respond to them better.

-Has anyone had this done before?


2.After resetting my immune system he said We could use either
-Entocort
-Prednisone
-Levaquin (again)
-Flagyl (again)

I had 3 rounds of flagyl (had a problem once we stopped it) and 2 rounds of levaquin and there was barely any change. If anything it made me feel worse.

Does anyone recommend Entocort despite the side effects? I hear a lot of mixed reviews and one of my friends (had colon removed same time) absolutely hates it.

I'm really on edge about the steroids because of major issues I had before because I couldn't get off them when I had UC. The side effects seem'd to hit me pretty hard than anything else.


sorry this is all sorta scattered. haven't been asleep yet and im in a million different places..
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Scott FScott FMember
I don't have experience with Entocort, but you do have more options other than steroids, depending on how far you're willing to go to avoid steroids.

1) Very low carb diet. This helps many with pouchitis.
2) VSL #3 DS. This helps me keep pouchitis under control, though it's best at prevention.
3) Other antibiotics - Cipro (like Levaquin), doxycycline, Augmentin, Xifaxan, ... Many of us find that some work and some don't.
4) Rectal IBD drugs (e.g. Canasa)
5) Biologics (e.g. Remicade, Humira)
6) Combination antibiotics. When Cipro alone stopped working for me, combining it with Flagyl did the trick.
7) Fecal transplant. This is still in the realm of clicking your heels together three times.

You don't have to do these one at a time. For example, I'd start VSL yesterday (if you haven't already).

Good luck!
J JJAMember
What does "after resetting my immune function" mean? It sounds like he is going to push a button or something? Does he mean use the Entocort or prednisone to try to kick you into remission?

I've used Entocort & Levoquin combined (rotated the Lev with another antibiotic. The entocort would put my pouchitis back into remission. My problem was I couldn't wean off it-once I'd get down to low, the symptoms would kick up again.

Immuran has now kept me in check for the past year and a half, and I am still on a partial dose of ENtocort. I have not really noticed side effects-it is supposed to be non systemic. No moon face like with prednisone. I do feel like my nails peel more since I've been taking it but nothing bothersome.
CTBarristerCTBarristerMember
quote:
Does anyone recommend Entocort despite the side effects? I hear a lot of mixed reviews and one of my friends (had colon removed same time) absolutely hates it.


Silver 20,

I have a situation similar to yours- inflammation above the J Pouch, not as far up as yours. In my case this is considered to be the result of SIBO from my J Pouch inlet being too narrow and "backwash" stool pooling above the pouch due to the small drainage inlet into the pouch. Did they do a MRI Enterography to look at if you are narrowed at or near pouch inlet? This is the test that confirmed my situation and it was then treated with a battery of drugs similar to the stew you are taking.

To answer your question, I took Entocort in combo for cipro and flagyl at the max dosage and it greatly helped me, but I stayed on it too long and ended up with a breakout of warts/yeast infection characterized by my dermatologist as the worst he had seen in 30 years (he also said my response to treatment was quicker than any he had seen).

Be careful with Entocort if you are taking it with the other drugs at its max dosage of 9 mg as it will seriously immunosuppress you and you get exposed to viruses and fungal infections which got me on the skin. Good luck. It did help me a lot but you have to be careful with it.
Silver20Silver20Member
JJA
quote:
What does "after resetting my immune function" mean? It sounds like he is going to push a button or something?



As he put it we wants to (destroy) my immune system completely and let it come back slowly before starting treatment. He says it may help the medications take better effect. It sounds a bit risky to me. Even as is right now if i get a cold it easily takes me a month to get over it.


Jan Dollar
Noted, and got negative results back on C. Diff. I'll see about CMV infections though.

CTBarrister
quote:
Be careful with Entocort if you are taking it with the other drugs at its max dosage of 9 mg as it will seriously immunosuppress you and you get exposed to viruses and fungal infections


He thinks this would be the best route to take first in combination with other meds but he still wants me to check around online. (thanks for the feedback)
CTBarristerCTBarristerMember
Silver20,

The cocktail recommended by your doctor may be very beneficial, but the side effects I mentioned could happen if you stay too long on Entocort at its max dosage. That is an issue you should discuss with your Doctor, I stayed on the max dosage for 6 months and that was too long. On the other hand there is no doubt that I improved with it and I would take it again as I had no other side effects. But I would be really careful about how long I was at the max dosage before weaning.

When I experienced the warts/yeast infection simultaneous breakout at the 6 month mark of taking max dosage Entocort with high dosage cipro and flagyl, it was sudden and massive, and took several months to treat and get rid of.

Not sure why he would have you take BOTH Entocort and Prednisone. I had always thought Entocort was a designer drug with a similar action to prednisone, with less side effects. The cocktail I took was Entocort, Pentasa, Cipro and Flagyl. Levacquin and Cipro are similar and in the same antibiotic family.

The inflammation you describe sounds a lot more extensive than mine was, so your Doctor may want to go after it more aggressively, but those drugs do have side effects including others besides what I mentioned.

Good luck.
Silver20Silver20Member
Finally met with my GI and we talked about all my options for treatment. Due to certain concerns on his part from more test results we got back he is holding off on 'resetting my immune system' to see how this next treatment goes.

He put me on 6 months worth on entocort at 9mg a day as well as a 30 days of levaquin at 500mg a day.

Checkup in 6 weeks and possibly in 2-3 months into treatment depending on how it is going we may start Humira (Wont do Remicade due to the risk of having it already)


@CTBarrister
Haven't done a MRI Enterography, just a few biopsys from the pouchoscopy.

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