Long term Cipro for Pouchitis

I have the same issue.  I seem to calm down on antibiotics but then flare up a few days after taking them . 

However, I am now on flagyl and cipro with h horrible side effects. I feel nauseated I'm weak and I have horrible cramping and abdominal pain.

On my way out to the doctors to get this checked out. Any questions don't hesitate to ask.

I’ve been on Cipro almost continuously since 2009. I carefully experimented to find the lowest effective dose, and discovered that taking it once daily works fine for me (and is more convenient).  I’m not aware of experiencing any side effects from it. I tried to find additional antibiotics that I could use in rotation with Cipro, but none of them worked. 

About 5-6 years ago the Cipro stopped working, but fortunately adding Flagyl made it effective again. I again found the lowest effective dose (of Flagyl), and I’ve been on both antibiotics since then. 

I get additional help from a high dose of VSL #3, spaced well away from my bedtime antibiotics. 

If Cipro + Flagyl stopped working for me (or gave me unacceptable side effects) I’d probably try a biologic medication, but so far all is well. 

Most people do fine on Cipro, but some do run into trouble. 

VSL#3 I was prescribed to me along with the Cipro and the Flagyl but I've heard it is discontinued. Where do you get it from Scott?

I have asked doc to give me a prescription for an antibiotic on a permanent basis and she has said I can't have it. Was it a gastorentrologist that prescribed it?

Have you tried the biologic meds?  Do regular doctors prescribe these too?

VSL isn’t discontinued, but it’s very hard to find now. Sam’s Club still can get it for me, but that was the eighth pharmacy I called. You might have better luck finding Visbiom, which is the original formula VSL is based on. I see that they have an ad on the right side of this page, so they are supporting the J-pouch forum. It’s packaged just like VSL #3, including prescription and non-prescription strengths.

Long-term antibiotics are standard treatment for chronic pouchitis, but not every doctor (or even every gastroenterologist) knows that. I do get mine from a gastroenterologist. Perhaps you could print out the articles referenced at the top of this Pouchitis forum in the thread called “Need a Good Article About Pouchitis?” (https://www.j-pouch.org/topic/...icle-about-pouchitis) and give it/them to your doctor. Alternately you could look for a doctor who knows more about pouchitis.

A gastroenterologist would also be a good source for an appropriate biologic.

If you haven't tried vsl3 or Visbiome yet you may find relief and not need to be on antibiotics long term. I have managed to stop taking antibiotics, provided I take at least one packet of probiotics of either brand. I am switching to Visbiome as it's getting easier to find, check their website.

Good luck

Agreeing with Pouchlogic. VSL #3 helped me stay off antibiotics for a year or two. It’s expensive, though.

Thanks Scott and Pouchlogic!

'I have managed to stop taking antibiotics, provided I take at least one packet of probiotics of either brand.'....

One packet?  Is that referring to one per day, or more?

Hi All,

What are your thoughts on how we got into this situation to begin with? Do you think it's genetic or stress ....

Also wondering what your diets consist of, what types of foods, what do you avoid at all costs, if anything?  I feel like I eat well but I still have a lot of issues with running to the washroom a lot and getting up at night to go to the washroom.

Just one packet a day, some days I'll take a second one in the afternoon if I'm feeling off.

My brother also has UC, he's managing on Remicade. Part me believes genetics play a role, other family members have had other digestive system issues (ibs, lactose intolerance and others).

I also believe that random people develop UC. I think stress is a big factor of it coming out or developing far enough to need attention.

As for food, I stay away from green veggies and I don't eat a lot of veggies to begin with. Any normal gas producer (califlower, pops, beans of any variety etc) I try not to have. Otherwise I eat what I want. Lots of sugar or chocolate milk also bother me but I just try not to over do it. I eat lots of bread, meats, cheese, pasta and potatoes.

I have no idea what causes chronic pouchitis, other than bad luck. I think that making up stories about it is likely to do more harm than good.

I eat just about anything and everything; I guess I limit spinach consumption, and choose smaller salads than I might prefer. My bathroom usage is just about perfect for me - properly treated pouchitis just looks like a well-functioning pouch. I did try a very-low-carbohydrate diet for a while, since some cases of pouchitis seem to respond to that, but I didn’t experience any benefit from it.

PouchLogic posted:

Just one packet a day, some days I'll take a second one in the afternoon if I'm feeling off.

My brother also has UC, he's managing on Remicade. Part me believes genetics play a role, other family members have had other digestive system issues (ibs, lactose intolerance and others).

I also believe that random people develop UC. I think stress is a big factor of it coming out or developing far enough to need attention.

As for food, I stay away from green veggies and I don't eat a lot of veggies to begin with. Any normal gas producer (califlower, pops, beans of any variety etc) I try not to have. Otherwise I eat what I want. Lots of sugar or chocolate milk also bother me but I just try not to over do it. I eat lots of bread, meats, cheese, pasta and potatoes.

Do you use tomato sauce on your pasta?

I'm go to go with the theory that each of us is different - meaning different foods, different factors, different medicines work for different people.  Personally, I am able to each vegetables and fruit. (And I put tomato sauce on my spaghetti.) Raw veggies don't like me much, but I can do salads - just know my output will be higher.  I watch my sugar because that will trigger pouchitis in me.  I take Align every morning and am on Entyvio, Imuran, and Budensonide to keep my pouch happy. I take Amitriptyline and Lomotil at night  to help me sleep and not let my pouch keep me awake with urges to go.  These work for me.  I don't feel like I live in the bathroom anymore.

It has taken a long time to come up with this formula that is working for my pouch.  My advise is to find a good GI who is willing to work with you to find  what will make your pouch work the best for you.  Maybe it will be long term antibiotics or a biologic.  Don't be afraid to try something different and see what happens.

Just my opinion.  Hope this helps

I do not believe UC or Pouchitis are related to diet. I was diagnosed with Colitis in my teens at a time when I was not a big eater at all or had experience any real stress!

Since my JPouch surgery in 2006 I’ve not had any issues with urgency and have a good quality of life. If I’m being honest my diet has not always been the best since the surgery as I am just so happy to be able to comfortably eat  everything and anything. However this thankfully has not had a negative effect on the pouch....that is until this current bout of Pouchitis. 

Nobody seems sure why why this occurs and I think it’s different for everyone but I would mention that we recently found out that my Grandfather suffered from Colitis during his life further confirming the original genetic link. 

Thank you Heather and Still Standing, I appreciate your messages very much.

What causes Pouchitis?

Hi Still Standing,

What do Entyvio, Imuran, and Budensonide help with?

Well, I have a couple of ulcers, one above the pouch and one at the connection between the pouch and the small intestine.  These medicines help to heal the inflammation and make the pouch function as it should. If I stay away from too much sugar, they also help keep pouchitis at bay.

I minimize my tomatoe sauce usage, I'm not big on tomatoes to begin with. Also I don't eat raw veggies due to gas issues.

I had good luck feeling better on the Low fodmap diet but I hated the restrictions on food.

Everyone really is different and it will take time to see what works for you. Even quantity of each food daily can make a big difference.

As far as what caused pouchitis, I think it's a lot of things. Basically my Dr said already having gone through UC and all the issues involved with that it's likely for us jpouchers to develop pouchitis and once you have it's more likely to reoccur.

I'm sure sugar is bad for everyone as bacteria can really feed off it and quickly make things worse.

@Scott F high dose VSL3 you wrote you use 4 packets a day?

where I live we need to pay for it ourselves and they are really expensive. But it seems to be different strenght.
1: 10 packets (450 billion live bacteria and one with like 250) Which one do you take?

@Brellis posted:

@Scott F high dose VSL3 you wrote you use 4 packets a day?

where I live we need to pay for it ourselves and they are really expensive. But it seems to be different strenght.
1: 10 packets (450 billion live bacteria and one with like 250) Which one do you take?

For many years I took 4 double-strength (900 billion) packets per day of VSL. I had managed to get my insurance to cover it. The insurance coverage ran out, so in recent months I’ve been experimenting with half that dose (2 DS packets per day). Things are almost as good, so I’ll probably maintain that dose going forward. I plan to switch to Visbiome in a few weeks, which is also packaged in both 450 billion and 900 billion strengths. The Extra Strength (900) requires a prescription. It seems slightly less expensive to go with the regular strength (if you buy a 4-pack and Subscribe & Save), so my plan is to take 4 *regular strength* Visbiome packets per day, even though I have a prescription for the 900s.

Each of us is different, and it’s extremely difficult to objectively work out how the probiotic is affecting your health. Patience and honesty are useful, and it’s best to avoid overconfidence in either direction. Try things that you can afford, take your time, and see how you do.

I take Cipro in rotation with other antibiotics. I find I can take a 2-3 week break between cycles, and I like to do that. I can’t be sure, but I believe I have developed neuropathy in my hands and feet due to extended Cipro use. It’s uncomfortable but not debilitating. This disease has always been a merry go round of symptom and side effect management for me.

Returning to the original question concerning Cipro experienced.  I was on it fairly steadily for about two years, punctuated with trials of XIfaxan, flagyl and Tinidazole alone or in combination with the Cipro.  Tinidazole was ok for a while but when I upped it to a treatment dose I developed  vertigo and light-headedness. The Cipro was my most reliable drug, and it really  impacted consistency. I was happy to go less frequently, and almost "normally," bit I think some of the inflammation and occasional blood from the anal transition zone was because of that hardish consistency.     Ultimately, I also think my  recurrent tendinitis was likely associated with the Cipro which can cause ruptured tendons and also swelling that manifests as tendinitis. Most of my problems with the drugs probably were when I had to increase dosage.  

I've switched to Xifaxan which for now insurance is covering and it's the best I've been.  But a low dose of Cipro  can be fine long term based on all I've read. My local GI sent me a paper once that supported this.  Some pouch doctors though won't prescribe it.  

I rotated Cipro and other antibiotics continuously for over 20 years until I finally went on Remicade 9 years ago. Since going on Remicade, I have had to take antibiotics far less frequently- maybe 2 or 3 two week cycles every 6-8 months. I have treated chronic pouchitis for almost 30 years, and my overall status and quality of life is good. I did have to have a stricture dilated at the J Pouch inlet in 2021, but it's been OK since.