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6 replies

1st Bout with Pouchitis?

U 1970UCMember
hi All,

i have been dealing with a cold since early december and it threw my pouch for a loop. several posters stated that this happens to them as well. my frequency continued to increase as well as the urgency. so i thought i might be dealing with pouchitis besides my cold issues. i am only 4 months removed from takedown, so it is hard to determine what is going on. still learning.

anyway, called my dr on the off-chance that i might be dealing with pouchitis. he subscribed me a 10 day round of cipro (started on new years eve). i have been feeling great since. unbelievable. i REALLY hope things stay like this after i get off it. this shows how good life can be with a j-pouch. but i suspect that my bms will increase a little when i get off it. i usually go 6-7 times a day (take 8 pills of immodium throughout the day). while on cipro, i am going 4 times at most. it is wonderful.

either way, i still need to remain patient because i am not even at the 6 month point. and hopefully, if it was pouchitis i had, i won't have it again for a long time.

we'll see how it plays out. but i hope as time goes by my pouch will behave as it is now without having to go on antibiotics. i wonder if i should increase my VSL input after i get off the cipro? i take 2 capsules a day. or should i wait to see if i develop pouchitis again soon after stopping cipro? trial and error...ugh!

happy new years to all.

peace,
mark
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CTBarristerCTBarristerMember
8 pills of imodium daily seems like a lot. If I took that dosage I would be stone constipated and it would be exacerbating my chronic pouchitis.

It is trial and error but I would speak to your Doc about increasing the VSL input. I can't last cold turkey on probiotics after going off antibiotics (have tried and failed many times), but my trial and error showed that taking probiotics in increased dosages after going off antibiotics prolonged the period of time before pouchitis inevitably came back (from 5 days to about 9 days).

The pouchitis may or may not come back even without probiotics being taken after a course of cipro, but increasing the probiotics to an acceptable maximum level can't hurt the chances of that happening.
suebearsuebearMember
Eight imodium per day is not a lot and it's certainly within reason for a jpoucher. If you need it, take it. Yes, the antibiotics will reduce frequency and most likely when you go off of them, your frequency will increase. However, as long as you feel well, you will most likely be experiencing normal recovery.

It is all trial and error; with food choices, bowel slowers, fiber, etc. And we are all different so what works for me might not work for you.

Sue Big Grin
TinCanTinCanMember
I would definitely increase your probiotic dosage after getting off of cipro. I have been dealing with pouchitis too and have been having trouble getting off of antibiotics. My most recent experiment was to taper off the cipro while increasing probiotic intake.

I have now been off cipro for a couple of weeks and am doing well - fingers crossed.

I am taking 4 packets of VSL#3ds/day. My hope is that high dose probiotics will do the trick in helping me maintain remission. This strategy is also supported by clinical evidence - so it is not just my own experiment.
U 1970UCMember
thanks for the responses! yeah, if i get another bout of pouchitis after getting off the cipro, i think i will take 4 capsules a day as opposed to only 2 of the vsl. i was thinking of taking 2 in the morning and 2 in the evening. damn, that stuff is expensive. that will be $100/month just for vsl. but if it helps me feel like i do now while on cipro, i must say it will be worth it!
U 1970UCMember
hey TinCan,

yes, i researched it and medco does cover it. i can get a 90 day supply of the DS for $200. i can live with that! just waiting for the script from my doctor. all along i have been taking 2 capsules a day not realising that in order for the capsules to be effective for a jpoucher, i would need to take at least 8-10 capsules a day and probably more! i am looking forward to starting the DS and i will start off on 1 packet a day (1/2 in the morning and 1/2 at night) and go from there.

this is only my 1st bout with pouchitis. so hopefully i won't have it regularly. only time will tell.

peace,
mark

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