I was listening to NPR today ("Here and Now") and stumbled onto a story about a J-poucher who developed Crohn's, went to see Bo Shen, etc. You can hear it at
This is Crohn's Disease
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Thank you for posting this. I can relate, having the j pouch surgery then becoming diagnosed with Crohns. It is very draining and at times it feels very hopeless.
Wow this really hit home for me because my name is Christina and my doctors are now thinking I may have crohns
Sorry to hear that ccanepa456. Hopefully it's not. It seems a much larger amount of people are coming out of j pouch surgery with Crohns than before. No one should have to suffer with this disease. I wouldn't wish this on my worst enemy.
Scott, Thanks for posting that. I have crohns and see Dr Shen, I cried when listening to this and still have goose bumps.
I am doing Ok but still in bathroom every 1.5 hours and have just gotten used it it, have strictures and fistulas and have learned to deal with them but I know that going back to a bag is a possibility and have seen the surgeons at Clevelend clinic about it, in my case very risky with all my scar tissue. My name is Christine also.
I am doing Ok but still in bathroom every 1.5 hours and have just gotten used it it, have strictures and fistulas and have learned to deal with them but I know that going back to a bag is a possibility and have seen the surgeons at Clevelend clinic about it, in my case very risky with all my scar tissue. My name is Christine also.
clousau what about this thing with oxygen that the chrisina in story used..should you not try to follow up on it as you do other things? wonder if dr. shen even knows about this?
hey and i did not realize you were diagnosed crohns..
hey and i did not realize you were diagnosed crohns..
scott thank you for posting that nor program..when exactly was that please..would like to know without listening to all 18 minutes what was that procedure that cleared up the inflammation..oxygen chamber?
It was broadcast on December 4 (at least in my area) - I posted the link the same day. Spoiler alert: The treatment was hyperbaric oxygen.
Boy I recognized right away the sounds of Humira. Breathing through those 10 seconds while it burns.
Irritating that the myth is still being perpetrated that j-pouch surgery "cures" UC, though.
Irritating that the myth is still being perpetrated that j-pouch surgery "cures" UC, though.
My GI says that the suspicion at times is not that we develop Crohn's per se, but another type of "umbrella" IBD sort of thing, especially in older pouches.
And yes. Humira DOES burn!
Thank you for sharing your story. I have had a j pouch for 15 years and in the hospital 1 time a year until j pouch. My j pouch became weak from so many infections. Went to Dr Shen and he did a scope and I was so sick with pain and no control of bowls by then. He said because of so many infections its left my j pouch with terrible painful spasms and going to bathroom about 25 times a day. He put me on Belladonna/Opium suppositories every 12 hours. The first couple of months through me for a loop so strong. But pain was gone in about a week and was not running to bathroom like before. I can no longer work due to the strong side effects. But my quilty of life is better. Christine is very lucky to have such a supportive husband. Mine is not much anymore I think he is tired of dealing with it. So I feel very alone in this and talk to no one about it anymore. You both are in my thoughts and prayers.
Frances, this is why support groups like this are so valuable. Unless you have lived with bowel disease, you just cannot comprehend it. having others to commiserate with can mean a lot. While it saddened me when my husband developed UC, at that point he toldme, "Now I understand what you went through!" As much as they might like to, they just cannot really understand how how IBD can rule your life.
even if we cannot solve your problems, we DO understand them.
Jan 