Re: totally unpredictable

NurseKarenMember

I'm so tired of this! Sometimes I simply stand up and I have leakage, then run to the bathroom. Other times after taking Imodium, stool is hard to get started and a little thicker which causes my fissure to open. Other times it's explosive. Always frequency and almost always pain. Lomotil is experiencing a shortage again, I cannot afford Viberzi. I have dilated loops of small intestine so I understand the mechanics, but I'm so tired. Some nights I 'go' more than every hour, a good night is I'm up every 2 hours. My life is severely changed. I have had my pouch 30 years and for awhile it was the least of my worries. Flagyl helps on and off but the doctor say she only sees 'mild' inflammation and stool tests show no problems. My diet is great, zero sugar zero grains, (I also have celiac). I already take an immunosuppressant for lung disease. ANY suggestions at all? I am (like most of us) a complicated case (as my doc says with a grin) I'm not smiling.

5/31/249:04 AM

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Scott FMember

When you write “Flagyl helps on and off” I can’t tell if it sometimes doesn’t work (even though you take it), or you sometimes don’t take it. In other words, do you have any information about how it might work if you took it consistently?

5/31/2410:31 AM

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NurseKarenMember

Thanks for answering! Flagyl works when I take it. It works for a month after I stop taking it, then I start with the symptoms again so I start the flagyl again. My GI doc says to get off it every so often. It makes sense that you are asking that question. Do some people stay on flagyl forever, never going off it?

5/31/245:08 PM

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Scott FMember

I’ve been on Flagyl continuously for about 8 years. I added it to Cipro when Cipro alone stopped working. I took the time to find the lowest effective dose, to minimize the risk of side effects. The pouchitis guidelines are very clear that for some J-pouchers continuous antibiotics are recommended. You might want to find a GI who is familiar with the guidelines, perhaps an IBD specialist.

For J-pouchers who require continuous antibiotics it can be advantageous to rotate antibiotics, switching between effective ones every 2-3 weeks. This requires finding several individual antibiotics that work (and that you can afford). I wasn’t able to do that, because only one antibiotic (Cipro) ever worked for me. It surprised me that Flagyl was effective for me in combination with Cipro, since it had never worked alone.

6/1/241:04 PM

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NurseKarenMember

Thanks Scott!I will take your suggestions.

6/1/243:27 PM

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