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Becuase I seem to have a bout of pouchitis that I can't shake, I had a scope today to see what was going on. I was told that my pouch was very inflamed but the rectal cuff looked good. I am currently taking a two week round of cipro and he recommended getting off because he doesn't believe it is doing much good? He said he would give me his recommendation after he gets the biopsies back. I know that if I go off cipro then I will likely get bad again so I am hesitant to do that. I have mentioned trying Xifaxin to 3 different doctors and none of them have heard of it or know what dosage to prescribe. I know that I have asked before what your thoughts are on the antibiotics that I should try but can I get some of your opinions please. I feel like I don't know what I am doing and I feel like those I am seeing aren't well experienced with what is going on. I live in a small town and j pouches are extremely rare. My initial attack of pouchitis included cipro and flagyl for 10 days. After ten days I discontinued cipro and then stayed on flagyl for 2 weeks. After the 2 weeks of flagyl I went off antibiotics and within a week I had the same symptoms of pouchitis and it was only getting worse. I then went on cipro again and have been on that for 10 days and am not feeling like it is really helping.Cipro and Flagyl are all that I have tried and I am going to need to get something else. What should I request? Thankyou!

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Besides cipro and flagyl, xifaxin and augmentin are known to be effective antibiotics in treating pouchitis. I take xifaxin currently, 550 mg twice daily. This is not systemically absorbed and has less side effects, although I have no real side effects from any of the antibiotics unless I fail to rotate.

I have had pouchitis for 17 years. It never really goes away, it is simply kept in a "simmering" state according to my docs. I posted my 6/22/12 pouchoscopy pics in another thread. It actually looks worse than it feels.

Pepto Bismol may offer some relief, as well, but it should be taken well after the antibiotic dosage.
CTBarrister
quote:
Does Pepto Bismal interfere with the antibiotic's effectiveness?


Not if you space it properly between dosages. I take the antibiotics at 9 am and 9 pm and the PB at 3 pm and 3 am or when I get up during the night. I have been taking PB this week because I was very shaky rotating augmentin last week to xifaxin this week. My Doctor wants me to rotate by taking antibiotics one week and no antibiotics the next, but I feel a little too shaky to start that regimen just yet.
CTBarrister
Leftie,

I am in a similar situation as you are and will be seeing my surgeon early next month for a scope. I have been on augmentin for 16 months straight since my takedown. This is supposed to be the mother of all antibiotics and it is failing me a bit now probably due to resistance. You can request a presciption for augmentin from your gi/surgeon before anyone tells you to throw in the towel with regard to treating this medically. As DJB indicated, there are other antibiotics you can also try.

Please post your biopsy results and your surgeon's recommendation as I am interested in your feedback and I will do the same after my in-office scope. I have already had two or more scopes with biopsies and they all come back with chronic pouchitis..no surprise here.

I still marvel at how doctors are willing to prescribe prednisone repeatedly with little to no concern over the side effects, which everyone knows are significant. I was prescribed prednisone more times than I could ever keep track of over 25 years. It irritates me that these doctors wimp out over prescribing another round of antibiotics or are not willing to work with you to find an acceptable medical treatment and instead defer you to your surgeon. Stay strong and politely demand any possible medical alternatives you are willing to try. My take is I have come this far and allowed them to remove a diseased part of my body (which after my colectomy report probably did not have to be removed). I'm going down fighting in any way possible treating my issues medically before I allow anyone to ever do another surgery on me.
J
Not sure how to post a quote here--sorry

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My Doctor wants me to rotate by taking antibiotics one week and no antibiotics the next, but I feel a little too shaky to start that regimen just yet.
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DJB,

Although I know our GI doc would prefer we have periods off antibiotics if possible, my experience with this is that every time I attempt it for a few days or so I go completely downhill rapidly and when I re-start the antibiotic it seems much less effective and takes twice as long to start working again.
This repeated experience has made me very reluctant to stop my antibiotic for any period of time after several failed attempts.
J
Jeane,

What I discussed with our doctor is that since taking the Entocort, the downhill slide did not happen until 9 days after stopping antibiotics as opposed to 5 or 6 pre-Entocort. He then suggested that I go off for one week, and see if I can make it through the week.

I am anxious to try this regimen, once I can stabilize a feeling of shakiness I have had the last few days, for the following reasons:

1) I think the Entocort will delay the onset of the downhill slide;

2) The posts of Vanessavy with regard to the Shen-imposed lactulose/prebiotics regimen have emboldened me to attempt to use prebiotics during the one week antibiotic hiatus. I have also discussed this in the "yogurt" thread and plan on talking to our doctor about it as well, especially since he usually adheres to Shenite philosophy.

3) I am thinking I will not be ready to do this until after one full week of cipro and flagyl.

I am going to discuss all these issues with him, attempt the regimen and report back.

He does seem to generally be predisposed towards trying to get me off of antibiotics. I am happy to try as long as my long term prognosis is not harmed, something we will only know by monitoring the narrowing of the ileum above my J Pouch with annual testing.
CTBarrister
DJB,

Make sure you let us know how it goes. I wanted to add that I started benefiber today also to help with the pouchitis. I was never consistent with taking any kind of fiber so I am going to give it s try. Of course, my sympotoms have subsided over the last couple of days once the antibiotic kicks in and builds up. and I am sure when I get to NY in early Oct,things will not look that bad and then if I attempt to reduce or eliminate the antibiotics, I will rapidly decline again. I too, would love to get off the antibiotics if I could. I will ask my surgeon about lactulose when I see him.

On a side note, I did ask our GI if I could have autoimmune pouchitis (I believe my test for it was negative when I had it done in NY). He indicated that if you had autoimmune pouchitis, antibiotics would not work for you.
J
Leftie
Have you been on other antibiotics? How long have you had pouchitis ? I have been on augmentin for 16 months and up until the last couple of months it worked pretty good greasy controlling my symptoms I am having a scope on Monday as I dm currently having pouchitis issues and I dm not sure what my next medicine will be. You should have good luck with augmentin with little to no side effects. The problem with long term antibiotics is they lose their effectiveness. Hopefully the course you will be on will help clear your case up.
J
quote:
The problem with long term antibiotics is they lose their effectiveness.


If you rotate the antibiotics it will preserve their effectiveness. I have taken them for 17 years to treat chronic pouchitis and I would not have lasted taking any 1 antibiotic without rotating.

There are antibiotics besides augmentin. There are about 6 to 8 that can be used to treat pouchitis with varying degrees of success.
CTBarrister
This is a great thread because I am experiencing terrible bouts of pouchitis and I have about had it. My last doctor did tell me I should be on antibiotics on a regular basis and the one she suggested was Cipro. Not a big fan of it at all or the side effects, even though they are mild for me, I don't want the possibility of long term effects. Anyway, I am on to a new doctor tomorrow because I moved and so, I will see what he thinks. I am over these bouts I have...about every few months. I have also been told I have ulcers in the pouch and this does not make me happy either. I bet it could be a combination of that and pouchitis giving me so much pain right now. Seeing that some of you have been on meds for so many years makes me wonder that there is hope for me. Maybe there is some way I can change up the medicine to help this.
fourgrubbs
I have had chronic pouchitis and ulcers and inflammatory polyps in my pouch for 17 years. It was more or less held in a "simmering" state for 15 years and then got a bit worse in the last 2. Since July I have been taking Entocort (anti-inflammatory corticosteroid) and doing somewhat better. I am still taking antibiotics and could not get off them in July but now my Doc wants me rotating antibiotics one week, no antibiotics the next.

My normal rotation is cipro/flagyl, augmentin and then xifaxin. I took xifaxin last week and no antibiotics this week. I will go back to cipro/flagyl next Monday. Currently I am just taking the Entocort and Pentasa.
CTBarrister
Glad to hear that. It has worked for me for about a year and since then it has neen losing it's effectivenes. I have a scope on Monday and I xm nervous. I am going to ask my surgeon outright to be honest with me about my chances of pouch failure. This has been way too long to ce continually dealing with pouchitis that will not clear up or go away. If I am eventually going to lose the pouch I want to just cut my losses and move on and start feeling better. Sixteen months like this has been far too long. Hope the meds clear it up for you.
J
I just had a scope about a month ago. The biopsy showed that I have colitis again... problem is, I had my entire colon removed back in 1999. So can any one explain how I would be able to get colitis again. I was always told that colitis only affected your colon. So, I am waiting patiently to get into Dr. Shen at Cleveland Clinic for some answers.
B

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