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I had UC and j-pouch surgery in 1999. I've had pouchitis since and occasional tried to go off Cipro and had to go back on quickly. Occasionally I also have been on flagyl with Cipro. I went off earlier this year for a few months, then went back on. The Nurse Practitioner told me to try to go off again, that lasted a month. I went back on and started to feel a tiny bit better and developed an allergic reaction to Cipro. Over the last few years I've become allergic to more antibiotics than I was. I tried vsl3 for a week and now on flagyl. I usually only can through a week on it, I plan to go on vsl3 ds when I get off the flagyl,hopefully 10 days.

Is this going to be the end of my pouch? Any feedback would be welcome.
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I have been on Cipro in rotation with other antibiotics since 1995. If cipro and flagyl are the only antibiotics you have taken I would suggest you need to develop a larger rotation. I rotate cipro in tandem with flagyl, then xifaxin, then augmentin. I take xifaxin after cipro and flagyl because xifaxin stays in the gut and is not really absorbed into the bloodstream. This in particular enables skin bacteria to regenerate and thereby reduces the chance of a yeast infection.

If you do not rotate cipro with other antibiotics, a resistance will be built up and you will also expose yourself to yeast/fungal infections.

VSL#3 has not worked as a cold turkey treatment for me.

My latest regimen is that my GI has me taking Entocort while reducing my maintenance dosages of antibiotics to the bare minimum levels. This strategy seems to be working. I continue to rotate antibiotics while taking the minimum dosage that works, in tandem with Entocort and Pentasa.

I think you need to develop an effective rotation of antibiotics rather than go off and on the cipro and flagyl. Xifaxin and augmentin are the other ones I would try first but speak to your GI and see what his/her thoughts are. There are also another 5 or so antibiotics that can also be rotated beyond the ones I have mentioned.
Last edited by CTBarrister
Thank you. I tried xifaxin a long time ago and at that time it didn't work but maybe it will now, i was perfectly happy on the Cipro all the time, but now sine the allergic reaction it's out. When see my GI I'flask him. The Cipro family of drugs was the only family of drugs I wasn't allergic to.

I have bad asthma that was finally getting under control,and have been on steroids often, but the bentacort is a good idea too. I tough out asthma and infections usually due to all my allergies to drugs. I've never taken augmentin, which may be my last antibiotic resort now.
Thank you for your comments. I really appreciate it.
Sandy,

You can try old IBD drugs also like pentasa, sulfasalazine etc. if you have not already. Even if these did not work with colitis, you may have more luck with them working with the jpouch.

Augmentin is another good antibiotic as CTbarrister mentioned. There seem to be a select group of us who are managing our pouches with chronic pouchitis/cuffitis. You need a really good GI, a lot of patience and a willingness to try different things that may or may not work in your quest for better function.
I'm with Jeane on this. We have been messaging in another thread in this section called BCIR Cuffitis. My whole regimen is listed there. I am now just starting Cipro and for me it is helping. I'm so sorry you are developing a reaction to it. That happened to me when I had active UC and I started having violent reactions to Asocol.

Take a look at that other thread. There's some great info on there!

Alex
Thank you, I found your thread and some others about cuffitis. I was on double strength Vsl3 for a week with little improvement. Now on Flagyl for 2 weeks and I am better, but not as well as i felt on the Cipro. I just started meds for Lupus that I wanted toward until the GI stuff calmed down. I guess my immune system is having a big party. (My asthma is okay and now excema has come back, it has been gone since age 5) Now that I have a plan, stay on Flagyl, and I can work and do a few social activities life is good.
hi..this may be a long shot..but maybe its worth trying belladonna/opium suppositories..ask you dr. abou it..

dr. shen tries to get people to try it as alternative to antibiotics..

also,jfyi..dr shen who is at cleland clinc and has about 2000 patients has infatically said to me and my husband he sees no relationship between probiotics and helping people with chronic pouchitis..i take some however myself..i have bacteria overgrowth he thinks..but treat as pouchitis..i rotate antibiotics..leviquin(cipro family),xifaxin,keflax,tindermax and augmentin depending..
quote:
he sees no relationship between probiotics and helping people with chronic pouchitis.


I have heard the same from other experts I have consulted, but this is in regards to using probiotics as an exclusive, "cold turkey" treatment in lieu of antibiotics to treat established, chronic pouchitis, as opposed to using probiotics as a supplement between antibiotic dosages.
I just wanted to second what CTBarrister says about probiotics and their usefulness for pouchitis. Probiotics do not appear especially helpful in the treatment of pouchitis by themselves, but there is decent clinical evidence indicating their value in maintaining remission once you have the pouchitis under control (for VSL#3 anyway).

I would also encourage you to take probiotics along with your antibiotics. It may seem somewhat counterintuitive, but I believe there is value in doing so. I personally was prescribed both cipro and VSL#3ds when I contracted pouchitis and have been taking them concurrently.

Presently I am nearing the end of my taper off cipro - which I have been taking off and on over the past three months. I am now taking 1 every other day for the next week. In addition I have ramped up my probiotic intake to 4 packets per day - one after each meal and at bedtime. I feel about as good as I ever have. Hopefully it will stay that way.
Sandy
About 8 months ago, my GI guy gave me the option of going on a bag or Humira (not sure if that is spelled right) anyway, it was not covered by my insurance ($1000+) per injection. Didn't like my choices. Searched around the net and came up with some testimonials for aloe vera. Since it doesn't taste good, I opted for aloe vera gel caps. I started by taking 3 caps per day. I am now down to 1 cap per day, along with a pro biotic (Samsclub generic for Align)and 4 Lomotil 2.5 mg ea. per day. I lived with blood loss on a daily basis, and was anemic most of the time prior to starting aloe vera gel caps. From day one, I noticed a difference, and things just kept getting better. I have not seen any blood in 4 months and my iron count has steadily improved. My BM count didn't change (5-8). I had my Pouch surgery in 2000, and have lived with varying degrees of pouchitis. The gel caps are available on the web or GNC store (where I get them) I hope this helps

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