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Ileostomy for CD

Thu, December 14, 2017 12:20 PM

Hello

I am facing an ileostomy surgery for my CD next month and I need help or thoughts.

I am 40 years old
I have a J-Pouch sinc3 1998

I was on Remicade from 2001-2009
I was on Humira from 2009-2017

I have narrowing and scaring at both entry and exit of pouch

Doctor says that Stelara itself will not or likely not help with the scarring

They want the ileostomy and then Stelara as a "preventative"

AM I MISSINg anything else?

Please help I am getting desperate

waynestreet
Joined Dec 14, 2017

Wed, January 03, 2018 2:14 PM

Reply posted for waynestreet.

I am sorry you are going through this. I have Crohns. I had a long stricture that was so narrow it was life threatening, so I had to have it removed. I had a temporary ileostomy. I guess I would adjust if I had a permanent one. I have severe fistulating crohns which is in remission right now with Humira, but every day seems like a gamble--like I don't know what is going to happen next. Sending positive healing energy your way. ;)

healerchic
Joined Sep 13, 2017

Sat, December 23, 2017 10:55 AM

Reply posted for waynestreet.

HI! I am so sorry to hear of what you're going through. I don't have much to offer in the way of other options, but I hope I can offer a little encouragement. I had UC and had my colon removed over the summer. Between that and the creation of a j-pouch, I had an ileostomy for 6 months. It is a very big life adjustment, and when I first had it I couldn't imagine a day when I would just be used to it, but that day came. If you get one, just take comfort in the fact that eventually it DOES start to be the new norm and it gets so much easier. I believe we're in a time that provides hope for new, more effective treatments for these illnesses. Maybe your ileostomy won't be forever! I wish you the best. If you do end up with an ileostomy and have any questions about living with it, feel free to reach out!

KalynRoseAnne
Joined Jun 23, 2017

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