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Crohn's Disease Forum » General IBD Discussion » What happens if the meds just never work?


01-11-2017, 10:00 PM   #1
Turftech
 
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What happens if the meds just never work?

I have moderate to severe inflammation throughout my colon and into my rectum. I also have ulcers into my small intestine. I haven't had any surgeries but my dr is talking about it more lately. I don't get a whole lot of useful info out of her however.

What does surgery mean to Crohns patients? I know UC patients can ultimately rid themselves of the disease by getting rid of the colon, but I don't think that's true of Crohns patients. It can just keep spreading, cant it?

Isn't that freaking depressing and scary? Do people just keep on having sections removed until they can't process food any more and die?

I don't want to die because I love my kids and want to be around for them, but my disease keeps on progressing and it's really weighing on me. Maybe I'm just panicking and overreacting.. I hope so, but still... this crap keeps me up at night. That and the running to the bathroom to crap myself silly.


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Crohns Colitis
Recently scoped with mod to severe throughout colon.
Tried a bunch of drugs to no avail.
Currently on Remicade and methotrexate but not really working.
Large joint issues due to Crohns
Daily dump of water 5X/day
Often just feel like hell and have no motivation for anything.
I love being a dad more than anything. Crohns limits my ability to do so, which frustrates me to no end.
01-11-2017, 10:34 PM   #2
ronroush7
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I think every person is different with the Crohns Disease. I heard of one former Miss America who went 25 years before having a flare. You could go years after surgery before having any more trouble. I hope your doctor can get you on the right mixture of medicines to put the disease in remission.
01-11-2017, 10:38 PM   #3
my little penguin
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What meds or med combos have you tried ?
There are five biologics for Crohns right now
Remicade
Humira
Cimzia
Simponi
Stelera
Each work differently
Frequency fusing and adding mtx tends to help

Illaris has been used in one pediatric case that was refractory
Ivig has also been used
Exclusive enteral nutrition ( formula only no food ) has been proven to be as effective as steroids
Ds has done een three times and uses it as supplemental nutrition

Some folks have had success with the Crohns exclusive diet basically very restrictive plus formula
Ds has tried that as well

Surgery only removes scar tissue in Crohns but disease does tend to come back .

Ds has had Crohns since age 7 and is now 13
Tagging clash
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01-11-2017, 11:53 PM   #4
Maya142
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Entyvio is also approved for Crohn's. There are also cases of doctors using stronger immunosuppressants like Cyclosporine or Cellcept or even Thalidomide.

Plus, there are many drugs in trials - IL-23 inhibitors, Xeljanz, Ertolizumab, mongersen etc.

There is no cure, but there are a lot of options and a lot of combinations to try.
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Mom of M (20)
diagnosed with Crohn's Disease at 16
Juvenile Idiopathic Arthritis at 12
Juvenile Ankylosing Spondylitis at 16

Mom of S (23)
dx with JIA at 14
Ankylosing Spondylitis at 18
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