My history was similar - after perhaps 7 years the Cipro stopped working adequately. Metronidazole alone had never worked for me, but I’ve been doing great on the combination of the two for about 5 years or so. I experimented to find the lowest effective dose, to keep the risk of side effects as low as possible. I also discovered that they work as well for me taken once a day, which makes it easier to separate them from psyllium, VSL, and dairy products.

Have you tried other antibiotics, like rifaximin (Xifaxan)? If you have two or more satisfactory regimens you can switch (rotate) between them every few weeks, and possibly lengthen their effective life.

If the antibiotics stop working or become unacceptable for other reasons there are a number of biologics you’ll be able to turn to, and they work in several different ways, so a failure of one doesn’t mean much.

feirs1,

I rotated 7-8 different core antibiotics for nearly 25 years with success, tried many others.  You can't stay on any 1 for too long or it will stop working.  Rotate every 2 weeks and you can go on as long as I did. Xifaxin, Keflex, Augmentin, Levacquin (same family as cipro)) Flagyl, Doxycycline are other options.

There was eventually (after 25 years) attritional increases in the inflammation while my symptoms remained under control.  For this reason I went on Remicade in 2015 and been on it ever since and antibiotics are now history.  All I take now is Remicade.

Have you tried Entyvio, Stelara, or Humira?  There are myriad other biologics options.  I was told Entyvio is next up if Remicade ever fails, but it hasn't.

Good luck.

I have literally only been on Cipro and have never tried anything else until now with the add of metronidazole (other than Remicade for UC).  Every time I ever ask my Dr. about rotating antibiotics he always dismisses it and says its fine.  He is world renown and very reputable in the industry but this still concerns me that I will build up tolerances like I think I am now.  Taking both these combined at these high doses feels like a short term solution but I don't want to pay for it in ten five years.  Appreciate hearing other peoples experiences with this so thank you. 

I am sorry you are suffering! There are a number of different biologics out there to try. I have talked to people on here that have taken Remicade and they told me it stopped working too. They have tried other biologics and they work great for them. Do not lose hope dear! Stay resilient. I would give Stelara or Entyvio a shot.

After every antibiotic failed that I had used for many years for chronic pouchitis, I am now using the biologic Humira which is working very well - one self-administered injection every 2 weeks. I am so happy to not be taking antibiotics anymore. Had to get help finding a way to afford it - the doctor's office was great on that account.

Good luck - feel better!

Nice to hear that!  Thanks!

I was on Cipro and Flagyl for about 5 years. I also suffer from Chronic Pouchitis and have a J-Pouch. It wasn’t until my gastric doctor prescribed VSL#3. They are probiotic packets and come 30 to a box. There is also Biosome which is the same thing and will depend on what your insurance will cover. The probiotics changed my life. Been using them for about 6 year now and I rarely have issues with my pouch. I take 2-3 a day. I was so relieved it worked and I was able to stop taking antibiotics. Hopefully it can help you as well.

I was on Cipro & Flagyl also years ago & still felt sick. Besides diarrhea, my worse complaint was  body aches, fatigue and weakness, just a feeling of sickness.  About 12 years ago I came down with bronchitis so my dr prescribed Zithromax, which this drug is used for (upper respiratory infections, pneumonia, etc.).  Coincidentally, my pouchitis sickness symptoms cleared up & I just overall felt SO much better. I felt like a normal person!  I have continued on Zithromax 250 one a day since.  The strange thing, azithromycin (the generic, which is MUCH less expensive) is not as effective for me. It must have something to do with absorption or something, don’t know?  I notice some pills & vitamins do not get absorbed, see them in the toilet whole.

Luckily my insurance pays for the Zithromax. I have thought to maybe try liquid azithromycin if I ever get in a position that my insurance doesn’t cover the hundreds a month Zithromax (brand name) costs.

I still need to be careful not to eat large amounts of fiber or overeat in general, I’ll still get sick with pouchitis. For me a low fiber diet, along with Zithromax 250 mg one at night), keeps me feeling ok.

Zithromax is not usually used for treatment of GI problems so is not usually prescribed by most doctors for this.  I’m so glad I got that bronchitis & discovered it worked for the illness symptoms of pouchitis.

Oh, another life saver for me is Pepto Bismol.  Really calms down the diarrhea with pouchitis for me.  

I also take 1-2 Culturelle probiotic tablets during the day & try to eat yogurt. Zithromax is a broad spectrum antibiotic & kills lots of bacteria so it’s a battle to replenish the good bacteria.  

This has just been my experience, may not work for someone else. Pouchitis symptoms & treatment vary from person to person.  I hope you find a treatment that works for you.

Barbara

UC. procotocolectomy & J pouch 2003.  

Zithromax is typically prescribed to treat the sexually transmitted disease chlamydia, but whatever works, works, and should be used.  I just would not tell any of your coworkers that you are taking Zithromax without telling them why, otherwise improper suspicions will be aroused about your personal behaviors.

Thank you for sharing!

Zithromax is used for lots of things, not just (or even mainly) STDs. It’s good to have another tool in the pouchitis toolkit.

I absolutely disagree that Zithromax is typically prescribed for STD's!  I would say that is a smaller percentage of the use of this drug.  There's no reason for me to explain to my friends and co-workers that I do not have a sexually transmitted disease because I take Zithromax. (I'm 66 years old and retired from being a medical transcriptionist for UCSF and other medical institutions for 30 years).  I have had a lifelong battle with ulcerative colitis and the resulting complications after proctocolectomy with ileoanal anastomosis and creation of J-pouch, I've learned a lot over the last 26 years.  Everyone is different, I think that I am an exception with the off-label use of Zithromax for pouchitis and the extraintestinal manifestations of IBD, but it gave me my life back. Thought that maybe someone could benefit from this information.  I probably should have kept it to myself. 

There is a reason I haven't been on this group for awhile...   

I also have had chronic pouchitis. I was on rotating antibiotics for 1 1/2 years,  when Dr Shen suggested entivyo. It helped immediately. Also I did not need my iron infusion at my regular one yr interval. Since the inflammation was gone, the slight amount of bleeding stopped. I was quite surprised that I didn’t need iron. I had My yearly Pouchoscopy 2 months after starting entivyo and the pouchitis was gone. The entivyo is an infusion every 8 weeks. I had no side effects and it takes about one hour. I think eventually it might be a pill. Luckily Medicare covers the cost—which appears on the statement as 12k per infusion (plus fees of infusion center)

wow thanks for sharing.  Seems like biologics are an option is antibiotics fail.  Saw dr. today - he wants to stick with antibiotics and see if it improves.  If not, scope is next. 

@marz posted:

I also have had chronic pouchitis. I was on rotating antibiotics for 1 1/2 years,  when Dr Shen suggested entivyo. It helped immediately. Also I did not need my iron infusion at my regular one yr interval. Since the inflammation was gone, the slight amount of bleeding stopped. I was quite surprised that I didn’t need iron. I had My yearly Pouchoscopy 2 months after starting entivyo and the pouchitis was gone. The entivyo is an infusion every 8 weeks. I had no side effects and it takes about one hour. I think eventually it might be a pill. Luckily Medicare covers the cost—which appears on the statement as 12k per infusion (plus fees of infusion center)

I did not know K-pouchers get pouchitis, sorry to hear thatr.

@Barbara Anne posted:

I absolutely disagree that Zithromax is typically prescribed for STD's!  I would say that is a smaller percentage of the use of this drug.

I think you misunderstood my comment which was also not directed at you personally. It is typically prescribed for Chlamydia as opposed to other antibiotics being prescribed for that condition is what I meant. It is also prescribed for other conditions, such as UTIs. That was my  only point. It's also factual. It was meant to suggest to ANYONE using it that there are other uses of the drug apart from pouchitis, and conclusions can be drawn when pill bottles get left around or when it's general use is discussed. It's not a comment that was directed at you specifically, but for anyone using it for pouchitis. Not sure why anyone would take offense to something that is both factual and just meant as a cautionary warning. Presumably we are all grownups here and understand the suggestions/connotations that can go with taking certain medications. It's meant as a head's up, and not to deter anyone from taking it. I have taken just about every single antibiotic known to civilization in 25 years of treating pouchitis. I am well aware that Zithromax is prescribed for myriad conditions, but it happens to be a go-to antibiotic for certain ones, because of its potency against that type of bacteria. And in the medical industry it's a known go-to for those conditions.

@feirs1 posted:

wow thanks for sharing.  Seems like biologics are an option is antibiotics fail.  Saw dr. today - he wants to stick with antibiotics and see if it improves.  If not, scope is next.

As I mentioned you can be on rotating antibiotics as long as 25 years. I was. Getting annual scopes is crucial because over time, while the antibiotics kept my symptoms in check, there were attritional changes in my "simmering" inflammation, as shown in annual scopes. This is why it's imperative to be scoped annually. If there are 3 or more straight years of attritional changes on the inflammation, and it becomes more than "simmering", the GIs start recommending Remicade or other biologics to dial it down. And you can have inflammation and little or no symptoms, many people do. In my case they started recommending biologics in 2009 and I didn't give in until 2015 when I had to switch GIs when my then GI left Yale for Mount Sinai. His replacement told me the exact same thing after he did his first scope and I decided that I should give in and try biologics. On my next scope in 2016 there was immediate and observable improvement in the inflammation in the pouch, less in the neoterminal Ileum. Most people will do what I did, and just go by the symptoms in deciding to stay on antibiotics. However, that's not the only part of the equation. It's important to get scoped, analyze scope pics and compare them year to year after treatment. Otherwise you don't really know for sure how well the treatment is working.

That being said, pouch cancers are very rare, and when they start, they usually start in the rectal cuff, which is colonic tissue. For this reason, the cuff pics and biopsy results are crucial. Cuff inflammation is a special concern and should be a factor in treatment decisions.

I also recommend the probiotic for pouchits!! It has really really helped me as well as kefir, saurkraut, chimchi...fermented foods great for gut health

@sweet honey posted:

I also recommend the probiotic for pouchits!! It has really really helped me as well as kefir, saurkraut, chimchi...fermented foods great for gut health

Do you like the taste of kefir??? I could not tolerate it unfortunately, taste wise. I eat Greek Yogurt a lot.

Just added t to a smoothie: spinach, protein powder, berries, McT oil(coconut oil) etc. Hide the taste!!!