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Hi,

I had my j-pouch put in 22 years ago in Northern CA.  I have had pouchitis a few times, but basically it has served me quite well.  I am now experiencing pain on my left side of my stomach, especially at night.  Sometimes it is even a piercing pain.  And I have horribly smelling gas as I sleep. It has been a year that I have had pain. (I just didn’t want to deal with it, but now I am getting worried.)

I moved to KS, and have an appt with colorectal surgeon Dr. Michael Porter in Wichita, KS.  I was wondering if anyone has any has any reviews about him?  Is he good?

My main questions is—what is the longevity of a jpouch?  I am concerned that this is more than pouchitis.  My appt is on March 4th.  

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Don't get to worried. I can't speak for myself but there are people on here that have had a pouch much longer than you. I'm only on year 9.

The first step is getting in to see a Dr which you have arranged. I always think it's going to be the worst when I actually have to see my doctor and he is good at assuring me we can figure it out, it may take time but you will.

Good luck and hopefully some people can more directly answer your questions.

P

Diane, I’ve had my Jpouch for 29 years after suffering with UC for 9 years. Many complications the first few years, mostly from not sticking to a low residue diet. Had a Jpouch redo 13 years ago, think the first one was put in upside down? I was unable to pass digested food regularly. All fixed but I did have pain. Used a heating pad. Massages.
Maybe you have a similar problem? Just diagnosed with CD last week but still feel ok, only have a fast metabolism and have diarrhea. A good doctor will help you. I always search for the best or go to the chief of Colorectal Surgery at the best hospital. Good Luck. Keep us posted.

BarbieG

Hello. Iv had my j pouch for 32 years and it’s been amazing. Some pouchitis/ blockage/ abscess in the past but flagyl and cipro got me better. I have now got some joint issues, pain /inflammation and been on monthly infliximab infusions but currently taking Mercaptopurine and sulfazalazine/hydroxychloroquine which have kept me well but now in hospital with severe abdominal pain all low down and all across and having scans, camera etc to see what’s going on but I’m terrified of losing my pouch. The dr said problems can happen because of its age but I’m just praying they can get me sorted.
I’m not sure if long term cipro and flagyl will help but after my camera hopefully tomorrow they will look at treatment.  It’s scary - I really want to keep it and not end up with a perm ostomy.
is there anyone had a j pouch longer than me ?

I’m in the UK and under Manchester royal infirmary. Currently in Chorley Lancs Hospital. Amazing doctors at both hospitals. I’m so lucky to have these.
Would love to hear how others are getting on.

Thank you.

Linzalisha 💕💕

Linzalisha

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