• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

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sam01

Hi,
I am new to the forum and glad I found it. My son, 20 has Crohns disease.
He was diagnosed with UC in his early teens and after every drug, and years of trying every med, and many flares he now has a j-pouch. The path report on the colon indicated UC. About a year after his reversal, he started having problems again. Turns out now he has Crohns and is on more drugs than ever before. Not sure how much relief he is getting from the medication. The Crohns is now in the small intestine (which was beautiful before surgery) and the small intestine is what made his j-pouch. The pouch has changed shape and is very narrow causing much concern. The docs are very perplexed. I am praying that the meds help and he can keep his pouch. He doesn't complain much of pain...let me know if any of you have experienced this....I know their is no easy answer, it's just good to find a place to go and express yourself.
Thanks for reading.
 
Angrybird

Angrybird

Moderator
Location
Hertfordshire
Hello and welcome to the forum :)

What symptoms is your son still having? What meds is he now on? I have not had this type of surgery so could not advise but do also check out our stoma sub forum as the folks here might be able to help.

AB
xx
 
David

David

Co-Founder
Location
Naples, Florida
Hi there Sam. I'm so sorry to hear about your son, that must be hard on the entire family :(

Like AngryBird, I'm curious what medications your son is on?

As you probably know, J Pouch isn't a very good idea if you have Crohn's Disease since it can lead to complications. It's unfortunate he was misdiagnosed with UC which led to the pouch :(

You may find other such experiences in our surgery forum as well.

We're here for you anytime you need us.
 
S

sam01

Thanks David. My son is on methotrexate, Humira, steroids, folic acid, cortifoam, flagyl and vitamins, probiotics. I believe he did have UC, the inflammation was always in the same spot. they think he developed Crohns after the UC as the inflammation is again in the same spot (so to speak) where it was before. I will look into several of the other forums as well. Thank you.
 
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