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Crohn's Disease Forum » Support Forum » Flaring after years of remission


12-31-2017, 01:27 PM   #1
LindaS
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Flaring after years of remission

Hi everyone. I had been in remission for 4 years. I had a colonoscopy in May that showed no active disease. Wednesday evening, I started to have cramps. By midnight, the cramps were unbearable, so my husband drove me to the ER. The CT showed massive inflammation that was causing a partial obstruction. I'm so upset. My life was finally going great, disease in remission, a job I enjoy, lots of family commitments that I was looking forward to. Now I have to deal with this, and I'm so hoping to get it under control and back to remission. However, every time I've ever come out of remission, it ended up with disease that only was controlled by surgery. I've tried most of the drugs to control Crohn's but either they didn't help me, or I developed serious side effects.

Are there relatively new treatments that are effective? CBD oil is legal in my state, but because of federal rules and my job, I can't take it.
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12-31-2017, 04:11 PM   #2
MissLeopard83
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Hi everyone. I had been in remission for 4 years. I had a colonoscopy in May that showed no active disease. Wednesday evening, I started to have cramps. By midnight, the cramps were unbearable, so my husband drove me to the ER. The CT showed massive inflammation that was causing a partial obstruction. I'm so upset. My life was finally going great, disease in remission, a job I enjoy, lots of family commitments that I was looking forward to. Now I have to deal with this, and I'm so hoping to get it under control and back to remission. However, every time I've ever come out of remission, it ended up with disease that only was controlled by surgery. I've tried most of the drugs to control Crohn's but either they didn't help me, or I developed serious side effects.

Are there relatively new treatments that are effective? CBD oil is legal in my state, but because of federal rules and my job, I can't take it.
Why is CBD oil not allowed? It doesn't cause euphoria like THC does and is not usually tested for in blood or urine drug tests. Ironically enough, I just bought CBD oil from my natural food store to try for several of my chronic illnesses - anxiety, OA, chronic pain, nausea, etc. I haven't tried it yet but plan to try it today since I have tomorrow off work.
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12-31-2017, 04:46 PM   #3
LindaS
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Why is CBD oil not allowed? It doesn't cause euphoria like THC does and is not usually tested for in blood or urine drug tests. Ironically enough, I just bought CBD oil from my natural food store to try for several of my chronic illnesses - anxiety, OA, chronic pain, nausea, etc. I haven't tried it yet but plan to try it today since I have tomorrow off work.
The rulebook says medical marijuana is not exempted from the drug policy. I just assumed that CBD oil is in the same category. I'll have to look into it and talk to my GI.
12-31-2017, 08:27 PM   #4
MissLeopard83
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The rulebook says medical marijuana is not exempted from the drug policy. I just assumed that CBD oil is in the same category. I'll have to look into it and talk to my GI.
It might be OK to take if the CBD is extracted from hemp instead of marijuana. That's what the CBD oil is from that I bought. Marijuana contains two components - THC, which causes euphoria, and CBD, which provides the most health benefits. THC is what drug tests usually detect but the percentage in CBD oil is nearly undetectable (you have to take a LOT of oil to get a detectable dose).
12-31-2017, 08:35 PM   #5
MissLeopard83
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This link provides some more information on drug testing. Of course, discuss it with your doctor first to make sure, but you should be OK:

https://www.leafly.com/news/cannabis...est-for-thc-or
12-31-2017, 08:41 PM   #6
my little penguin
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What drugs have you tried ?
Remicade /humira ?
Stelara is new and a different mechanism for Crohns
Ivig is for refractory Crohns
Side effects are tough but it works for most


There is Simponi /cimizia as well
You need a drug that will treat your Crohns

There are phase 3 drugs that target just iL 23
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01-01-2018, 05:53 AM   #7
Guerrero
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You were not taking any drug during 4 years?
Now biologics are effective, the new ones, with less secondary effects than remicade, are entyvio and stelara. You should ask your doctor.
01-01-2018, 08:03 AM   #8
my little penguin
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Entivyio is really effective for ulcerative colitis
But not as effective for Crohns
And Stelara is very effective for Crohns

My childís GI will not use entivyio for any of the Crohns kids since it isnít very effective
But does use in UC
01-01-2018, 10:13 AM   #9
LindaS
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What drugs have you tried ?
I tried remicade, humira, methotrexate, 6MP and one other that I can't remember. I usually have a lot of problems with side effects, so my GI and I decided that if I wasn't having inflammation or symptoms I should go without treatment, but I was monitored closely. I just had a perfectly clear colonoscopy and small bowel MRI this past summer.

I'll have to see about stelara. Right now I'm on course of predisone.
01-01-2018, 10:43 AM   #10
my little penguin
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Ds started Stelara in August
It takes 6 months to become effective
But the dose can be increased to once every 4 weeks instead of every 8 weeks
Not an anti tnf alpha
Works on a different pathway il 12 /il 23

Only 1-2% infection risk (very low)
And no black box warning
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