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17 replies

Time to call the GI or hang in there?

K KiaMember
It's almost a month now since I stopped my first ever course of Flagyl.

While I was on it and earlier in the month since discontinuing it, I had virtually no leakage. Gradually I am seeing more leakage.

Increased trips to the bathroom are mostly to clean up small leakage, not so much to empty.

I am not having the cramping, urgency, on going butt burn or involuntary loss of muscle control I had when I had pouchitis.

Well, there has been a time here and there with cramping but I've attributed it to gas, something I ate or our vacation across country last week. Minor butt burn when these things happen, but it passes.

I am trying to sit and watch it for a bit, esp since I was in flare for so many years..."Normal" for me may take some time to relearn. Plus there is the issue that I likely have some muscle damage/compromised control from a tear during child birth.

At the same time, I do NOT want symptoms to get away from me.

I currently take Culturelle (VSL was not approved), Gas X and Immodium.

Any thoughts? Frowner
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K ktaMember
Personally, I went thru the whole on again, off again antibiotic thing mutiple times. I finally learned when to catch it early and that catching it early meant I could continue with my life more consistently. If I waited too long, I was a slave to the bathroom for a few days or more. Eventually, I realized I had chronic pouchitis and I've been on antibiotics for nine years now. I have zero tolerance for my butt interfering with what I want/have to do and feel fortunate that, so far, there are meds to help me live as I want.

Everyone is different though. Figure out your body and tolerance levels. I'm becoming intrigued with the idea of cutting out sugars and carbs to manage pouchitis but am not to the point where I am willing to do that. Things take time. You will find what works for you.
CTBarristerCTBarristerMember
For me, leakage at night is always the 1st sign of pouchitis, and the other hallmark symptoms come later. I think you need to be back on antibiotics. You may want to rotate through a few before going off again. Flagyl only works on certain bacteria, cipro on others, which is why they are often prescribed in tandem - the "shotgun effect" of a broader swath and spectrum of coverage.

I have been rotating antibiotics for 18 years, but after reducing sugar and carbs in my diet, I am on my lowest dosages of antibiotics that I can recall.

A lot of people are head-faked by pouchitis. They are expecting to get hammered by symptoms all at once. Onset can be gradual. If you don't treat it, it will get worse, and when it gets worse, it will be a bit harder to treat. It's pretty much that simple.
K KiaMember
Alright.....I think the blasted bacteria are already taking over. Got the first cramping, followed by an accident.

I have tons of extra flagyl and I swear I'm going to start it this weekend if I can't reach an on call doc. The GI mentioned suppositories before starting flagyl again, if needed. Seriously, though, if I can't talk to someone before Monday morning, I am considering the flagyl. I had results in 8 hours the first round.

I am not willing to back step, even if they want to change plans come Monday.

Talk me off the roof?
K KiaMember
So the on call doc said increase immodium from 3-4 times to 4-6 times. Then call my regular GI Tuesday as she's out of town.

He wasn't buying into the suppository idea, which was the same reaction someone posted in reply to me previously in here.

I'll go with the increased immodium for the weekend but I'm not so sure I buy this will be the fix.

On a side note, during my first flagyl course, I was on a three week binge of PB sandwiches which I know helped to slow things down. I could tell there was a change when I got off that kick. I just don't want to keep eating all that fat and the bread (even though it was wheat).
Scott FScott FMember
Kia-
As you suspect, whatever is going on (most likely the pouchitis resurfacing) isn't really being addressed by Imodium. I kind of liked your idea of restarting the Flagyl, but it partly depend on your relationship with your regular doc (the on-call doc is just stalling, of course, which is probably better than random guessing). I've been doing fine on pretty much the same plan as kta (always on antibiotics, eat whatever I want), but I probably should try cutting oput the carbs. That's made more difficult (in my case) by gout, which is exacerbated by many protein sources, so I haven't tried that path. PBJ is *not* low carb (the "J" is full of sugar). Good luck!
K ktaMember
My surgeon manages my pouch and he made it clear pretty early on that, to some degree, I was in charge. He would have expected me to start the flagyl once I thought I needed it. It took me maybe three reoccurences to figure out when to start on the drugs again and even then, it was a bit of a guessing game. I think, though, that I always guessed right because symptoms cleared up.

Does your doc have a nurse who can help you on Monday?
K KiaMember
Kta, yes, my hope is the nurse will help me on Monday. I am pretty new to their practice so I don't know how much she will do in the GI's absence.

Trust me, come 8AM tomorrow I intend to be finding out, lol.

I've been thinking about what you said regarding having little tolerance for your butt interfering with life. That's definitely where I am at now that I've experienced the joy of relief after so many years of pain.
Jan DollarJan DollarModerator, RN, retired
My GI is pretty good for my needs. He's not interested in scoping anytime there are symptoms, but follows my lead based on what I think I need. I keep Flagyl on hand and he's fine with me taking it as needed. I just report to him by email if there are new symptoms or pouchitis symptoms do not respond to the Flagyl. And, I never, ever travel without it, particularly if I am going to a foreign country or somewhere I've never been.

But that is part of having a good rapport with your doctor. Communication is key.

Jan Smiler

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