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Crohn's Disease
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Posted 2/27/2019 12:15 AM (GMT 0)
I have discontinued Imuran. Remicade is wearing thin. And I am eating no veggies as they block me with in hours. Wheat closes me also pretty quick.

I have 6 inches of scar tissue and still active disease at the end of my small bowel including the flap. I Also have two internal fistulie that are pretty much dormant but still there.

I have a limited diet based on what causes me pain and what will obstruct my small bowel.

Dr. Steinhart in Toronto has mentioned Surgury for a few years and is basically waiting for me to say the Rem is not working lets do Surgurey.

Is it time for Surgury?
Posted 2/27/2019 12:49 AM (GMT 0)
I certainly might be time for a resection. Did you have any updated diagnostics done to determine now many centimeters of stricture you might have? Also, you'll still need a maintenance medication plan after surgery. How long were you on Remicade, and were you tested for antibodies?

There are several other anti-TNF's now. Humira is a logical next choice, but Stelara is getting really good reviews.

Many go on to years of remission after surgery. I have a friend that was in horrible shape, and had a lot of small intestine removed. The last time I spoke to her, she was still in full remission without meds. Her surgery was 11 years ago.

Hope you get things under control, and good luck with your decision and going forward.
Posted 2/27/2019 11:18 AM (GMT 0)
Been on Rem for 5 years. The Imuran I showed resistance to. Had been on that for 7 years.

Steinhart said there is no other drugs for me before Surgury. But he didn't mention what I would be on after.

Last scan I had 6 to 9 inches of scar/ active disease.
Posted 2/27/2019 1:06 PM (GMT 0)
Deak, perhaps you may consider getting a consult with a surgeon to see what your options are. A resection may be what you need. If it's affecting your ability to eat that is not good. I had a resection with 12 inches removed, complete blockage & abscess. Mine was an emergency surgery, you really want to avoid that scenario.

Good luck.
Posted 3/1/2019 2:44 AM (GMT 0)
If the stricture is caused by scar tissue rather than inflammation, no medication will make it any better - inflammation can be treated medically, scar tissue can't. It will just slowly get worse over time as more scarring builds up. Based on what you've said, it sounds like time for surgery to me.

For short strictures, strictureplasty or dilation can be an option, but yours sounds too long for that, so it will almost certainly have to be a resection.
Posted 3/1/2019 10:01 AM (GMT 0)
Yes. I agree. I'm asking for surgery before it becomes an emergency surgery.
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