I have a roaring case of pouchitis. I feel like I have colitis back all over again. I am seven months post takedown. I am pretty scared that I am screwed. I hope that I just have pouchitis and not Crohn’s in the pouch. The doctor gave me Flagyl which I started. Did anyone get pouchitis so soon after takedown? If so, does anyone think that I could be in a higher risk category of having more pouchitis since I already got tagged with it so soon. I am pretty sad about this. Like many - I went through hell to get here, and I hope I can beat this quickly. Does anyone go on a special diet. I have heard about low carb.
Replies sorted oldest to newest
I did and recommend Rifaxin if the flagyl does not work. I am 15 years and pouch is good don’t worry Doug. Rifaxin is the drug in my opinion.
I do not think a diet is necessary yet. Don’t stress.
If Flagyl alone does not help enough, think about a combination with Cipro. Antibiotics should take effect within two days, so your symptoms should subside quickly.
You don't need a special diet, but you may want to eat what's easily digestible for you until you feel better.
Seven months post takedown is not so early in my opinion. I had to deal with chronic pouchitis and ileitis from the very start on.
Thanks guys. I am allergic to cipro, that is why they started me on Flagyl. I will keep the Rifaxin as an option. Thanks for the support.
@Doug K posted:
I hope that I just have pouchitis and not Crohn’s in the pouch.
There is not really much difference if it becomes chronic. If you have inflammation it has to be treated and you either respond to the treatment or not. I would MUCH rather have treatable Crohn's Disease than untreatable pouchitis. As someone who has been dealing with these issues for 30 years, I can tell you that getting caught up in labels or accurate diagnoses of the particular kind of inflammation is a waste of time, because all the treatments are the same regardless of what label is used, and the patient either responds or does not. A much more pertinent concern is not responding to treatment and/or being sickened with side effects by the treatment.
The best long term initial strategy for combatting pouchitis is to lower carbs and sugars and ROTATE antibiotics so that no one antibiotic loses efficacy. I did this for 25 years before the inflammation gradually became less well controlled, and then started the "second line" of treatment, which is biologics and specifically Remicade. This has held things in check for the most part, except at the J Pouch inlet which is a problem area for long term pouches due to backsplash stool and small intestine bacterial overgrowth aka SIBO. The reason to lower carbs and sugars in one's diet is they tend to feed SIBO.
I hold a Crohn's diagnosis technically after dealing with pouchitis for 25 years, but as I mentioned earlier, worrying about diagnosis as opposed to treatment is a losing endeavor.
If your pouchitis does not clear up after one treatment and becomes chronic, refractory or antibiotics dependent, you will need to get scoped annually. Apart from keeping an eye on the rectal cuff which is colonic tissue that will automatically be biopsied, scoping will determine the progress of treatment, the pattern of inflammation, and will assist in future treatment determinations.
As other have mentioned above Xifaxin is an excellent antibiotic for those who are sensitive to antibiotics, because it is not systemically absorbed and stays in the gut. It was always part of my antibiotic rotation for many years.
It's not time to freak out yet. I had a case of pouchitis about six months afterward but then only four more times in....wait for it....27 years! So just take things as they come, there is no way to predict how it's going to go over the course of your life.
Just adding to what others said- it’s really common to be nervous and concerned with pouchitis. You just spent a lot of time, money, and pain to get your J pouch and now it seems like that was for nothing. But - pouchitis is extremely common and usually responds well to antibiotic treatments. And if those lose effectiveness over time like they did for me, there are many other options in biologic drugs, meds that you probably took before like sulfasalazine, etc. You have a LOT of options before having to consider a redo.
As we speak - I just finished my 2 week treatment of Flagyl and it worked. I feel 100% normal. For me it started working after a week, and I felt even better at week two. Thanks for the support. Doug
Darn - I got off of the Flagyl for 2 days and my pouchitis symptoms came back. My biopsy results also came back and saw mild active inflammation in the pouch. I took these biopsies 11 days after starting Flaygl so my doctor felt that was a little unusual. QUESTION - other than Cipro - what antibiotic or collitis med can I try? After 26 years of Prednison use that is one think. This is kinda scary. Thanks
There’s a bunch of biologic meds out there. It really depends on your GI- they will evaluate your inflammation and maybe try something else. It can take some trial and error to find one that works for you. After years of doing Cipro on and off I was finally put on biologics when it wasn’t addressing the inflammation any longer. Biologic drugs I’ve tried include Humira, Remicade, Stelara, and (lately) Entyvio. Of all them Entyvio has been the most effective and is my GIs preferred med since it’s fairly targeted to the digestive tract and doesn’t do broad suppression like some of the others. There’s even more in the Janus Kinase family that I haven’t had to escalate to yet.
But I would guess your doctor will try something much less intense to start. Maybe another round or two of Cipro, a short term prednisone hit, etc. It also depends on how the inflammation is affecting you. If you feel mostly normal it might not need addressing. Mine is around my anastomosis, which is already strictured and causes me regular blockages, so we go after it pretty hard. But that may not be the case for you.
There are a number of antibiotics you can try, since you’re allergic to Cipro. The ideal one is Xifaxan (rifaximin), as was suggested above, which has extremely little systemic absorption (so minimal side effects). Its key drawback is that it’s very expensive. It didn’t work for me, but it’s magic for some folks. Others on the list include Tindamax, Augmentin, and one or two others I’m forgetting. This may also be a good time to try a high-potency biologic like VSL #3 DS (900) or Visbiome Extra Strength, though these are expensive too if taken in the suggested dose during active pouchitis. These require a prescription at the higher strength, which *sometimes* means they are covered by insurance. VSL #3 DS kept me from needing antibiotics for about a year.
Thank you for the advice! I will try the extra strength Visbiome insurance or not. Rifaximin is next also. Thanks all.
Doug, that reminds me of my last scope one year ago. I also had an antibiotics course of 10 days before and I felt really good, but there were clear inflammation signs.
I guess antibiotics are only a good means to help with symptoms (much better than prednisone or budesonide for me) and give you the feeling of a normal pouch function, but they don't eliminate the source of the bowel's immune response.
Yet I'm quite happy now with my long term antibiotics treatment and I'm trying to find some tricks to improve my diet, which is much easier with a calm digestion and less background noise.
Thanks Steve - glad to hear you found a solution. I appreciate the post.
Highly recommend Visbiome. It immediately changed my susceptibility to chronic pouchitis after 25 years of cycling on and off antibiotics and dealing with pain that interfered with my work and life in general…..actually was recommended by an anesthesiologist when I was having yet another exam under anesthesia. Definitely angry that neither my gastroenterologist nor my surgeon offered this intervention….6 years after starting Visbiome I have gone from 5-6 antibiotic RX/year to only 1 in the past 4 years. I take Visbiome 1capsule 2X/day for maintenance. Still have occasional bouts with frequency/urgency and bloating where I feel like I’m developing pouchitis. I up my dose to 2 capsules 3-4 times/day and I get things back under control without antibiotics. Also I increase my focus on enhancing my gut microbiome with more fresh greens and fruit in my diet. Based on some food tracking I have found that low carb diet pushes me toward pouchitis so I make sure I have a serving of whole grain carb daily.
Hope you find get things under control!