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...that resolves on its own? Everything I read about it seems to point to resolution via antibiotics, and that repeated antibiotic use can lead to chronic pouchitis.

Since my takedown nearly 2 years ago, I've had about 3 instances (including right now) where I've had pouchitis-like symptoms: cramping, increased bathroom trips including diarrhea, increased urgency (which is sort of acute: it builds up quickly and dissipates quickly, many times a day, particularly after eating). And the effects that accompany these symptoms: fatigue, appetite aversion, etc.

The first time it happened was only a few months after my takedown. By the time I was able to get in to see my GI surgeon, the symptoms had basically stopped -- the whole attack lasted about 5 days. He didn't bother to scope me.

Last year I got some kind of virus and got severe diarrhea followed quickly by dehydration, and started having abdominal pains. I went into hospital where they didn't know how to deal with me, and I stayed there 5 days languishing in a half-starved state until I managed to come back with the ministrations of my family. I did get a scope there, and it was normal.

For the past several days those same symptoms have been plaguing me. Partly it might be stress-related, also the effects of menstruation, which always make my GI symptoms worse. So. Should I be worried? Make an appointment for a scope? Take probiotics? My instinct tells me to let my system heal by eating easy foods and getting a lot of rest and hydrating like crazy. And I think it might be working, though slowly. But I'm worried. 

I do NOT want to get dependent on antibiotics. Cipro and Flagyl played havoc with me when I was sick, pre-surgery, and I was prescribed them last year after my hospitalization but I literally gagged when I tried to take them and they make me pretty nauseated. Next to Prednisone, they are some of the worst drugs I've had to take.

So, any thoughts you might have would be welcome. Thanks for reading my massive tome!

KS

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KS-

I think (based only on personal experience) that some pouchitis does resolve on its own, and particularly can resolve with just aggressive use of probiotics. I think Jan may disagree with me on this.

I don't think antibiotic use "leads to" chronic pouchitis at all, and I think you have talked yourself into exaggerated negativity about antibiotics. I'd certainly rather not need them, and they can cause troublesome side effects in some people, but they have allowed me to live a normal life. That's a pretty huge positive.

I'm 99% sure I had pouchitis over the summer (I posted a similar question at the time!) and it went away on its own. As with you it was triggered by my period, and I called my Dr.'s office to see what I could do to try and head it off before needing antibiotics. Long story short his nurse is a dingbat, and by the time I spoke to him A MONTH LATER my symptoms were resolved. His nurse did suggest taking probiotics, but did not recommend a specific kind. I haven't had much luck with them in the past (pre j-pouch) so I just try to eat a yogurt every morning and get my probiotics in that way. 

I'm happy for folks who can tolerate antibiotics, but my system is wrecked by most of them, and complicating things further I can't handle most generic medications which causes a lot of frustrations communicating between the dr's office, insurance and pharmacy, so I always try to make them a last resort. I'm not so much concerned about them causing chronic pouchitis as I am building up a resistance to them. 

Good luck, hope it goes away quickly and on its own!

Resistance to antibiotics is not built up if you rotate antibiotics.  I have taken antibiotics to treat pouchitis for 20 years.  I am more or less asymptomatic when I take antibiotics, however the scopes show chronic inflammation.

Taking antibiotics doesn't "lead to" chronic pouchitis, it leads to relief from chronic pouchitis.  I would not be able to have any quality of life without them.

Thanks for your responses. I guess I didn't mean to imply that using antibiotics for pouchitis can cause dependency; rather some cases of chronic pouchitis can be controlled no other way, as seems to be CTBarrister's experience. I lean toward J9Pouch's perspective, having had very negative experiences with antibiotics and every other non-surgical/drug-based attempt to control my UC. So you can probably understand why I am keen to avoid them. Perhaps I just need to come to terms with the fact that my gut configuration will require them for my comfort and health, and hope that it is only occasional and not chronic. For now though, I will do everything I can to get myself back to an acceptable standard of health. It is such a rigmarole getting in to see the doc, get the scope, prescription, etc. As I mentioned, the first time I went through it, my symptoms had resolved before I even got through half of it, and the last time I got sick, the hospital admitted me with no treatment plan or earthly clue as to what was going on with me. Ah, the joys are endless.

Interesting question.  I am about 3 1/2 years post-takedown and have never had pouchitis to my knowledge.  However, for the past several days, I have experienced fatigue, excessive thirst, persistent mild headache, some cramping, muscle aches, and very watery stool with some nausea and a bit of low-grade fever.  It occurred to me last night that this could be pouchitis.  I did recently start taking probiotics, so I will increase my dosage and see what happens.  This episode is also concurrent with my period last week as well as some symptoms indicative of perimenopause (night sweats & flashes), so I am very confused.  I would rather avoid meds if possible.  Just not sure at what point I should see a doctor.  These symptoms could be indicative of any number of viruses as well.  Any advice?

Beth, what you describe is basically what has happened to me in each of the 2 Decembers that have passed since my takedown. Weirdly, I experienced this in almost exactly the same week of the year! In 2014 the dehydration got so bad that I went into hospital and stayed there for 5 days, getting weaker and weaker as I was on a clear fluid diet (which always kills me). This past December I managed to avoid hospitalization by recognizing what was happening and taking a couple days off work and absolutely pounding fluids. I think both times, it was precipitated by a little virus (and the confluence with my menstrual cycle didn't help...). I've learned that I just have to watch out for that, especially in winter when germs are flying fast and furious. My system is just that much more sensitive than it used to be! A small price to pay for the level of health I've achieved since my diseased organ was removed and stopped poisoning my body.

When I saw my surgeon this year for my annual follow-up, he suggested we schedule my next follow-up for early December this year, since a pattern seems to be emerging. So maybe if it happens again, I will actually be able to get a scope if/when the symptoms are occurring. In both of the previous 2 years I wasn't able to see him until several weeks after they resolved.

As far as your current state of symptoms, I wonder whether your symptoms started after you started probios? I know when I was sick, pre-surgery, I couldn't tolerate them. I do better with them now, but some of the symptoms you describe, particularly the nausea, were the result of probiotics for me. If you're getting dehydrated, a lot of those symptoms can be explained by that. I use a potion of orange juice, lemon juice, water, honey and salt (homemade pedialyte, without all the chemicals) to manage dehydration.

Good luck!

Thank you!  I don't think it is the probiotics.  I have taken some in the past, but I recently started taking some by Doterra (an essential oils manufacturer).  I have not been very consistent with them.  However, I did also just begin taking another digestive enzyme by them last week -- maybe I should lay off of it for a few days and see if there is an impact there.  I think I will try out your pedialyte recipe as well!  Hoping all of this resolves on its own

I use a recipe similar to the one on this page: 

http://dontmesswithmama.com/ho...s-electrolyte-drink/

You can juice your own fruits if you have the wherewithal, or I just use "fresh" orange juice (i.e. not from concentrate) and realemon. Also if you have the fancy organic honey and salt, go for it, but any old honey (or even sugar) and salt will do. Good luck! It tastes a bit weird at first, but I find it works so well, I can get past the taste and enjoy the refreshment.

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