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My son was diagnosed with UC in 2009 and treated with antibiotics, steroids, Lialda, 6MP, Remicade, & Humira over the course of 4 years without success at remission.  As weight dropped off and pain increased so much that he could no longer attend school, we knew something had to be done and opted for J-Pouch surgery which was completed with success in March 2014,  His small intestine ruptured in April 2014 with emergency surgery performed then by Fall of 2014 he battled pancreatitis and had to have gall bladder removed in Jan. 2015.  Since that time things have been stable with only a couple of bouts of pouchitis.  However, now we are dealing with chronic pouchitis that won't seem to resolve.  He has been on Cipro & Flagyl, Xifaxin, uses VSL#3 when not on antibiotics, had used canasa suppositories that have helped some and now is back on Lialda and Uceris to try and promote remission.

He is eating a low carb diet and eats hardly no sweets.  Seems that he can eat some things that he notices causes pain but then next time they don't.  Seems we can't put our finger on anything that will help resolve pain.  Any suggestions of other things that work that may help him?

Thanks,
Susan

I'm sorry to hear that your son is having such a difficult time.  I'm 65 years old and had my first bout of UC at age 15.  It went into remission in my early 20s, but it returned when I was 30.  Thus, I had a Koch Pouch, which I've had now for about 30 years.  It was the best thing I ever did.  I have had periods of pouchitis, but all responded well to Cipro.  I don't know how old your son is, but here is something I learned.  I believe my remission in my 20 was due to my use of marijuana.  I stopped using it when I went back to college at age 30.  Immediately, my symptoms returned.  I did have periods where the pouchitis happened frequently.  When marijuana was legalized in my state, I started using it again (usually right before bedtime).  I haven't had an attack of pouchitis in about 3 years.  I don't know if you believe all the false hype about marijuana, but I would suggest you consider it to see if it will help. You can research it easily online.

I'm sorry to hear that your son is having such a difficult time.  I'm 65 years old and had my first bout of UC at age 15.  It went into remission in my early 20s, but it returned when I was 30.  Thus, I had a Koch Pouch, which I've had now for about 30 years.  It was the best thing I ever did.  I have had periods of pouchitis, but all responded well to Cipro.  I don't know how old your son is, but here is something I learned.  I believe my remission in my 20 was due to my use of marijuana.  I stopped using it when I went back to college at age 30.  Immediately, my symptoms returned.  I did have periods where the pouchitis happened frequently.  When marijuana was legalized in my state, I started using it again (usually right before bedtime).  I haven't had an attack of pouchitis in about 3 years.  I don't know if you believe all the false hype about marijuana, but I would suggest you consider it to see if it will help. You can research it easily online.

 Reply posted for smlewis.

Get another opinion, get several, don't rely on some guys on a unanimus website for medical advice that could potentially make it worse, sure some of us like me, have college degrees, but I would not take medical advice from a man who has a degree in ancient history, and history of religions...be much better taking advice from a lady like my doc, who has her degrees in cuttin and sewing, eh?  Good luck

 Reply posted for smlewis.

I had the j pouch surgery for colitis in 2003.  I would frequently have problems diagnosed as pouchitis.  Finally had tests done that determined it was actually Crohn's.  You might want to get tested for that.

 Reply posted for smlewis.

After my total colectomy in 2009 I've had pouchitis about once a year. This year however, it has come back multiple times. It always cleared right up with antibiotics but now I don't think they're working as well. I guess the purpose of my reply is to just show that he's not the only one. If you have any hints and tips to dealing with it, please share. I haven't found much.