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I had all my surgeries in 2007! I am now a 66 year old male! I have chronic pouchitis ever since j pouch was hooked up! I was told the 1st 17 years I had Ulcerative colitis and after my colon removal due to wall to wall polyps, I still was sick and they said I must have Chrohns! I have been on Remicade, Stelara, Entyvio and now on Humara, which is not helping! Cipro, blew out my tendons in biceps, and shoulders. Flagyl caused my hands to freeze up , xffaxin does not work! After many years I tried cypro again and after a few days I could barely walk due to excruciating pain! Nothing has ever put me in remission and I sleep with pads and often go through 3 pads and 3 pair of underwear! My stomach is always really loud and rarely happy! I am not happy with my gastro doctor and his lack of care for my constant suffering! Help??   fisherdan54

I had my 3 surgeries in 2007 for a j pouch! I also have had like 5 hernia repairs and have mesh on 3 of four sides! Ever since the jpouch was connected I have had chronic pouchitis! I was told I had U.C. in 1996 and only med to work was Prednesone which I was on about 11 years! Now at 66 years old I have like 3 accidents a night, pain in all joints and especially tail bone and hips, Cipro had blown out tendons in back, biceps, both rotory cuffs! Stomach cramps are all day and every day! I drug my butt to work 33 years! Also dealt with bladder cancer after 5 years of U.C.! Been on pain meds most of my 24 years! I've exhausted all the new drugs Entyvio, Stelara, Remicade, Humira! Went through all the pill form in first 10 years! Been in this battle so very very long and the pain and nights of cramping and accidents just beat you up too much! I hate the thought of a stoma! I had 2 for about 6 months in between surgeries! The loop was worse than hell! My skin was always covered with blisters and with the loop, there was almost constant leakage! But on my straight cut on first stoma, if I got the skin healed and the plate set, it was not bad to live with! Help advise me! Is it worth going back???

Last edited by fisherdan
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Thanks for your quick response! Wow, I'd have to think hard and get my wife's thoughts on another surgery and risk a permanent bag! Very much considering changing doctors! I don't know where he will want to go when he sees Humara is not working? Might as well go back to Budestone! I never tried VSL 3! I just thought since I have no colon, it would be a waste! what would be great is to find an antibiotic that crushes SIBO and I don't have a bad reaction to!

I did not mean to get into your head regarding another surgery and bag - but knowing it is a potential “rescue” treatment if you become riddled in pain could be comforting.  Please do some google searches on VSL#3, there are peer reviewed double blind tests that shows in some people it helps ward off Pouchitis- but probably a maintenance drug rather than an first line treatment.

@fisherdan This sounds like a tough place. I can’t tell if your doctor thinks he’s treating pouchitis, SIBO, Crohn’s, or Something Else - they don’t usually have identical treatments. In any case, most of us who are dealing with some sort of chronic pouch issue look for symptom-improving “helpers” in addition to the main medications. You may be using some of these, but you didn’t mention them. In my case I find that psyllium fiber (Metamucil/Konsyl) and a high dose of VSL #3 with breakfast and dinner helps. I also take Lomotil at bedtime (though usually not during the day), and that helps me sleep through the night more comfortably (some folks prefer Imodium). Some also find that a small fatty “meal” (e..g. a spoonful of peanut butter) at bedtime further slows the gut, making accidents or awakenings less common. I hope one or more of these is useful to you.

I got the GI to send out an antibiotic and I finished as of last night, my ten day supply! This one worked, as far as all the foamy soapy look left my stool and most often the stool looked separated between clear water and stool! I have had diarrhea for 30 years! Stomach still is very loud and active! It stays angry all the time! I was diagnosed about 3 months or less with AFIB, so I am now on Lopressor and Eliquis! Gaining weight though I am trying to cut back night time snacking! My appointment with surgeon for counseling on permanent ileostomy is January 19th! I am anxious because there is no going back if I do it! Ever since I had my Jpouch, it has been non stop trouble and no meds have got me into remission! At 66 though, I am not too concerned with the intimacy issue, which at a younger age that would be an issue! Need some imput! Thanks!

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