Would love to hear from folks who have had their j-pouch for25 years or more. My first 15 years were great. Then I had recurrent pouchitis for about 15 years and was on and off many anti-biotics and now for the past 3 months I have been on Humira.
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Hi Melissa,
Nice to meet you.
I have had my J pouch since 1986. I woke up this morning obstructed I've had obstructions all through the years. But a lot more lately in the last four and a half years. In and out of hospital with obstructions. I had one surgery for obstructions that was life-saving in 1989. I've had pouchitis as well on and off throughout the years. Many times on antibiotics. My last hospital stay in July they wanted to put me on antibiotics because they thought I had c difficile and they also thought I had pouchitis I declined the antibiotics and did my own home care with Pepto-Bismol and oil of oregano. To this day since July that it's all I am using for pouchitis.
1984 and very little problems
1986 and doing just fine. Only 57, but expect to have my pouch all the way to the finish line.
28.5 years, pouchitis/Crohn's for around 26 of those years, effectively treated with first antibiotics and now Remicade. Quality of life is excellent. I got my pouch at age 29, now 57 and looking to keep it to the finish line as well.
Hi Everyone,
40yrs here, just recently diagnosed with bad case of pouchitis, can’t do antibiotics because of cdiff issues. Still weighing my options on which medication to use.
Since 1990 , 57yr old male. Great procedure. Hardly any issues at all. Fit, workout- no diet restrictions etc . Only heath issue is IBD arthritis. Been on Remicade for about 15-20 yrs
Surgeon , surgical group was based out of S Windsor , CT (Hartford) and procedures at a few of the local hospitals - colectomy late 1990 then the main j pouch surgery and finally the drop down. Over a period of 6-9 months I recall. A few issues at the time , scar tissue-adhesions that required surgery. Also a painful kidney stone. Maybe 1-2 cases of pouchitis over early to mid 90’s. Both resolved on their own after a very uncomfortable 24-36 hrs.
great since. Last colonoscopy about 4 yrs ago good.
60 yr old male. Had mine since 1996, No food restrictions, but still poop approx. 10 times per 24 hours, 3-4 times at night. Maybe my amount of bathroom trips has eliminated pouchitus, cause I've never had that.
Had a real bad case of food poisoning once where I was hospitalized.
“S” pouch since 1982 ...so at 38+ years.
You are very lucky! I hope I make it that long and above! You are blessed 
@NMGuy posted:60 yr old male. Had mine since 1996, No food restrictions, but still poop approx. 10 times per 24 hours, 3-4 times at night. Maybe my amount of bathroom trips has eliminated pouchitus, cause I've never had that.
Had a real bad case of food poisoning once where I was hospitalized.
Sorry about your food poisoning back then
I agree 100%!!! I too think multiple bathroom trips prevent pouchitis! A lot of people do not believe that but I definitely believe that too
Thank-you for posting this
Hi all,
j-poucher here as a result of a hereditary gastrointestinal disorder which stems from an error occuring in the genetic code/the chromosome #5 better known as the apc gene. In my case it was mutated from birth, and, like my late father, i inherited familial polyposis that he likely inherited from is father.
My jpouch turned 19 years old this past October, 15.
Of note, I had sub-total colectomy when i was 23 not a total colectomy which is the norm/standard. My condition has improved as per my gastrointerologist/last examination by way of endoscopy/flex sig.
Typically fap can get worse, it does not improve. My feeling is diatary changes played some role in improving things and my illness backing off/regressing.
I have my sigmoid colon/last 6 inches or so of colon/rectum.
My most recent diagnoses are microscopic colitis for which im treated with xifaxin when needed and then i also have ibs-d. I am in aremission from those two illnesses thanks to my gastro placing me on the medication called mesalamine 5-asa a dosage of 1.2 mg two tablets 12 hous apart, so 2x a day morning and pm
Also canasa 1,000 mg at bedtime helps with proctitis issues.
I wish you all the best.
Thanks for reading!
Len
I have had jpouch for 28 years- now 61 years old. Diagnosed with Crohns Disease about 15 years ago. Treated with antibiotics for many years, sometimes steroids. Most recently treated with biologics. Hopeful jpouch lasts as long as I do.
