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Hi.   I have had my j-pouch for almost ten years now.  I battle pouchitis, frequently, with cipro and/or flagyl.  I am prescribed serious anti-diarreah meds.  Up until a few months ago, I had never had the really severe burning pain; which is not caused by irritated skin nor hemrhoids.   A peek in,the Dr could see imflamation, swelling and redness.  The pain is excruciating to the point I fast regularly.    Any info/experience appreciated.  Thanks, Mike
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Hey Mike how are you now? I would like to dialog with you a bit about the problem that you are having. I have had the same experience as you AND IT HAS BEEN HELL!

My symptoms started in 2008. Are you any better? has anything helped? this has debilitated me. the pain is worse than anything i have experienced in my 48 years on earth. as if the jpouch and having to crap all the time aint bad enough.

pointers:

no caffeine of any kind

No sugar at all

no spices of any kind

no gluten

no alcohol of any kind

try heavy probotics

gently rinse your arse out with a handheld shower head on hot don't scald yourself not that hot! keep it clean and dry dry dry.

if you are itching like deep jock itch type itch you are probably over run with yeast  candida and jock itch. get zeasorb, brand jock itch powder and put it all over down there and do it until its gone and then 2 weeks more or even more. I found that some of my pain was caused by that. we don't process things like others this is true with everything we eat and we get over run with bad bacteria and fungus and the doc gives you antibiotics that are really bad for us! I found that WILD OREGANO OIL HELPED ME.

STRESS IS NO GOOD FOR YOU if you have a high stress Job or a bad relationship that is draining you? well Bro I hope you make some good decisions to change it.

Take Care, Cause I Care!

I have been dealing with the same thing and OMG when they say on a scale of 1 to 10 it is a 10 and I have had 3 babies and literally cut off part of a finger.  I have an ulcer in the 1/8" of colon left and I keep thinking that's it, but who knows for sure.  Anyway, doctor put me on 2.5% Hydrocortisone cream and I put it on the end of a Canasa suppository morning and night and it seems to have helped.  

Insurance gave me a really hard time with covering the suppository version so I am making due with getting it in there with the cream.  Go to doctor Wednesday so we will see.

I had 2nd and 3rd degree burns but the pain of my current bout of pouchitis / cuffitis  is right up there with the pain level of 10.

Cipro was working, but no longer.  I had been gluten free due to hidradenitis suppurativa for the past 5 years, but that is when my UC developed.  I'm completely lost.  For the most part I eat healthy - no processed - AND I'm on VSL 3 DS, twice a day. 

Has anyone tried the SCD diet that ppl with Crohn's swear by?

 

 

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