Hello, i find so many different recommendations online. Can anyone say what foods have helped to either eat or avoid during a flare up and to stay flare up free? Please, any other advice is welcome. Doctors have been flummoxed.
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Hi Brett, everyone responds differently so your mileage may vary, but here are the foods that really helped me with my recent bout of pouchitis: kefir and Greek yogurt; oatmeal; bananas; and prebiotics like psyllium husk or Benefiber with all meals. I avoided raw veggies and fruits (except bananas), sugars, and anything carbonated or caffeinated. It made a huge difference. I realized that I must have had pouchitis for a long time, and I’m going to keep up with prebiotics and probiotics as a regular routine now to be proactive for the long haul.
Hope that you get the relief you need!
I held off antibiotics for about a year with high-dose probiotics (VSL #3), but it’s expensive to take enough unless your insurance covers it.
Some people get good results from a *very* low carbohydrate diet. It’s not a quick fix, so you won’t see results immediately, but it can be durable. This approach doesn’t make exceptions for “good” or “healthy” carbs, so fruit and candy bars are in the same category, as are potatoes.
Thank you both very much. Portia, I've had good results with a similar diet in the past. Never tried kefir though. I will get it now. This time I've flailed around looking at pouchitis and post colectomy diets. Unsure what to do.
Scott, Cipro and Flagyl are prescribed in conjunction with stool testing or no?
I'm totally new here but grateful to find this forum. My colectomy was in 1981 and ileostomy closure in '82. Pouchitis only started about 2017, but with a vengeance and is now very chronic.
BTW, how do you get those signatures to show from your profiles, with your history. Mine is only visible to me in my profile.
Thank you!
Brett
Hi, @Brett L. If you’ve added a signature of your choosing to your profile you can check the box under it that says “Include Signature on new posts by default.”
I’m not sure what stool testing you’re thinking of for Cipro and Flagyl. My prescriptions were never associated with any such testing. Can you clarify what you’re thinking of?
Avoid sugar and carbs (especially processed carbs), and you will lessen the amount of bad bacteria that causes pouchitis. Fiber, whether from Metamucil or elsewhere, will also help.
Low Carb diet, Greek Yogurt, and oatmeal! I never had pouchitis 
Great information, thank you everybody!
@Scott F My GI doctor gives me a stool testing kit that goes to the lab. Among other things, the results determine whether antibiotics would be effective for me or not, as I understand it.
@Brett L My best guess is that the doctor wants to rule out (or identify) any GI infection before starting antibiotics. This is particularly important for C diff (which would make both Cipro and Flagyl a terrible idea for different reasons), but other GI infections could seem like pouchitis but need different treatments. So there’s no reliable test that can tell the doctor whether Cipro or Flagyl will be helpful for pouchitis, but there are certainly tests worth running before starting antibiotics.
@Scott F, oh, I see. Thank you for explaining that. I think this week I will ask for an appointment with my colorectal specialist. I only spoke with my gastroenterologists PA last week. But now that you mention Cuffitis, which bId forgotten about, my problem does seem more like cuffitis than pouchitis right now. They're consulting with each other, but perhaps I would get different treatment from the colorectal specialist.
The colorectal specialist is a surgeon, so it’s a toss-up depending on their actual experience. The surgeon might be more interested in J-pouches, but the gastroenterologist might be more interested in medical management of a problem.
Right thank you. I wasn't thinking about it that way but it's good to get these reminders. In fact, to your point about her being a surgeon, last week The colorectal specialist told the gastroenterologist that she doesn't see me as a candidate for surgery. She doesn't see it as a problem that would be solved with surgery.
Based on your experience I don't understand why they're not giving me the antibiotics right now.
Brett, I wish you the best in trying to control pouchitis symptoms with diet. I was as successful with that as I was for my UC (NOT!). I had 20 years of remission with my UC before I didn’t. It did not matter what I ate or did not eat, my colon was self destructing. I had a good decade with my j-pouch before pouchitis and cuffitis found me. Again, it did not seem to matter what I ate or omitted from my diet. More recent research indicates that pouchitis risk increases over time when you have IBD. Symptom-wise I did well on antibiotics, but the pouch ulcers did not heal. Remicade with oral Imuran did work for me. No antibiotics since 2016 and my function has been very good. I eat what I want. I am not saying that is your answer, but that complex problems never have simple solutions.
Good luck with your follow up appointments.
Jan
Jan, thank you. From all these responses, I will ask some questions now about Flagyl, Cipro Remicade and oral Imuran.
May I ask, your feedback on working with gastroenterologist or colorectal specialist? Where have you had best results getting prescribed solutions that worked? Also any experience with the Cleveland clinic, which I don't think my insurance will cover, but sounds like it's the top place to go for this?
For ongoing care a *knowledgeable* GI is usually better than a surgeon, until/unless a surgical problem crops up. The exception seems to be surgeons that prefer to keep taking care of the folks they operated on. Getting a new surgeon for a non-surgical problem is almost always a mistake.
The best GI in the country for difficult pouchitis is probably Bo Shen. He was at Cleveland Clinic for a long time, but is in NYC now.
I have always seen my gastroenterologist since about a year post op. I reLly see no reason to see a colorectal surgeon for non surgical issues. This is pouch maintenance. I have had some GIs who were not as as good as others. But, this is why it is important to advocate for yourself and ask about exploring better options. My GIs have alwaus been open to suggestion.
Jan
@Brett L posted:Jan, thank you. From all these responses, I will ask some questions now about Flagyl, Cipro Remicade and oral Imuran.
May I ask, your feedback on working with gastroenterologist or colorectal specialist? Where have you had best results getting prescribed solutions that worked? Also any experience with the Cleveland clinic, which I don't think my insurance will cover, but sounds like it's the top place to go for this?
I would stick with GI. If there is something physically wrong with the J-pouch that is more than a stricure, I would see a colon surgeon.
@Scott F, thank you I didn't know about Dr Bo shen. But my family is in NYC. That's a possibility. However my insurance situation is a problem. In Texas an individual can only buy an marketplace HMO, which covers only emergency med outside TX. Off the marketplace only short-term plans that disqualify pre-existing conditions are available. That's it. Dallas has a top rated IBD Center UT Southwestern Med Ctr that has a Pouchitis specialty, but they only accept employer-sponsored health plans. I'm now facing a financial assistance request to see if I can get in there or a long journey to Fort Worth to a former colleague of theirs. That's probably my next move. I don't know. I'm tired. Not sleeping at night due to this flare up. Discovered last night if I lie on my back I don't get the incessant urges and I can get a little sleep btw urges.
@Brett L I’m so sorry that your insurance is an issue. The Health Insurance Marketplace here in Maryland includes Blue Cross PPO plans with national networks and out-of-network coverage, and I’m grateful to have been able to choose that.
Do you have an ordinary gastroenterologist who could prescribe a course of Cipro? Have you had a pouchoscopy? How certain is the diagnosis? I can’t tell what is making your situation require highly specialized care. Have you already tried ordinary treatments and failed? Pouchitis can feel awful, but the treatment is often simple and quick, with relief as early as within the first few doses of Cipro. I hope you feel better soon!
In just a few days on here I've learned so much. Thank you. Especially you @Scott F.
I think a GI with experience in pouch health could write you a script for Cipro or Flagyl after a phone consultation. For most people, they are pretty safe drugs, and seem very effective. If it works, you may have your answer. Many people only need antibiotics sporadically, some need it continuously. A pouchoscopy could be useful but it may take a while to schedule. See what the GI says about trying a round of antibiotics to help get you out of this crisis.
Thank you @@Doug K. I wrote to my GI last night asking about it. I got my first decent night of sleep last night in several days but still have pressure and pain. I've learned sleeping on my back keeps me from getting urges all night.
@Brett L posted:In just a few days on here I've learned so much. Thank you. Especially you @Scott F.
Your welcome, were always here for you
Hello all, has anyone heard of, or had any experience with Rifaximine
@Brett L posted:Hello all, has anyone heard of, or had any experience with Rifaximine
Rifaximin (Xifaxan) is an antibiotic that mostly stays in the intestine, so tends to have fewer side effects than most antibiotics. It’s used for a few things, and is sometimes used for pouchitis. It’s very expensive, and it didn’t work for me.
Well, it turns out I have C-Dif. They've given me Vancomycin. Interestingly the symptoms feel the same as my pouchitis symptoms. I've had to take Advil today for a terrible case of plantar fasciitis, which I avoid because of the risk of it causing ulcers. This too shall pass. Thank you all for your support and for being a valuable source of information.
@Brett L I’m sorry you have C diff, but I’m very glad you have a diagnosis. Hopefully the Vancomycin will take care of it. C diff can be persistent and recurrent - it forms spores that are extremely durable. Sometimes a single treatment works fine, but it’s helpful to remain alert to the possibility of it coming back. In stubborn cases, if the Vancomycin can’t get the job done, FMT (fecal microbiota transplantation) has turned out to be quite effective.
Thank you @Scott F. I knew about FMT, but i didn't know it coukd be persistent. I hope this does it definitively. Thanks for the heads up. I'll stay vigilant.
@Brett L posted:Well, it turns out I have C-Dif. They've given me Vancomycin. Interestingly the symptoms feel the same as my pouchitis symptoms. I've had to take Advil today for a terrible case of plantar fasciitis, which I avoid because of the risk of it causing ulcers. This too shall pass. Thank you all for your support and for being a valuable source of information.
You are welcome, hope things get better dear