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Crohns Disease has returned
Well, after 32 years without a large colon, my Crohns Disease has returned. I've had a ileostomy and mostly had good luck managing it. Within the last year, I have been getting pain and bleeding at the stoma (internal). A couple of weeks ago, they did a ileoscopy and discovered the Crohns was back. Since then I have been bleeding more and they put me on Prednisone for 2 weeks. Today I talked too a specialist to see what action they want to take.
Oh ... I also have cirrhosis of the liver. (NAFLD)
They want to put me on Skyrizi, which I know is very expensive and who knows if it will do the trick.
I don't understand why I can't have another resection of the small intestine? I mean .... my Crohns took 32 years to come back. I'm 70 years old and would think surgery would take care of the problem for the rest of my life.
They are saying because of the bleeding and problems with my liver, it would not be safe to do.
Not sure what to do from here. Do I get second and third opinions?
Tired of my gut hurting every day.
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Hi! Interesting story! The Crohn's may have been dormant but it never goes away. I too have Crohn's and had an ileostomy for 2 1/2 years due to a fistula. It may be controlled by a biologic. There are several and some have a $5 co-pay. Check with your doctor!
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1 ReactionIf possible I would go to Mayo.
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1 ReactionHi, yes interesting ! I also had my large colon removed when I was around 25, they said it was UC and colon was just a mess. Now they/think I have Crohn's and have started me on Skyrizi had no issues for about 40 years.
They were going to try Stelara, but it would have cost me $3500.00 every 3 months.
Abbvie the maker of Skyrizi has help plans and you may also fall under that. Some people I was told can get it very reasonable. --worth checking it out.
Wished I could tell you it is working but thinking it may be too soon.
Good luck--JP
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1 ReactionThanks for the input,
I’ve decided to hold off on Skyrizi for now and force my doctors to try something else. I hate the idea that Abbie is profiting so highly off all their drugs and especially hate the millions they put into wasteful advertising! Can’t really afford it anyway. I’d rather leave that money to my wife when I’m gone.
There’s got to be an alternative that will help.
Thanks again
Jerry
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1 ReactionI would definitely get at least one other opinion. Preferably from a clinic that treats your ailment.
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1 ReactionYes. Definitely. Thanks!!!
I agree --and the cost of some of the new drugs are just unbelievable.
Take care
JP
@jerr51498, if you are interested in getting a second opinion at Mayo Clinic like some members have suggested, here's where to get started with submitting a request: http://mayocl.in/1mtmR63
My daughter has Crohn’s disease. A number of years ago she went gluten-free and caffeine free. She only had one incident when she ate one of her kids twizzlers on Halloween not realizing it had gluten in it. she was able to go off all her medicines and stay healthy as long as she avoids, gluten and caffeine.
Welcome, @jvitanza1. Being gluten-free has become easier over the years, even at restaurants. There's much more awareness. I guess the need for reading labels never ends though does it? Who would've thought that a Twizzler would contain gluten, right?
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