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Hi all, I figured I'd take a shot and ask others living with Crohn's how you manage your disease. I'm just over a year and a half since diagnosis and its really been up and down. I seem to be in a non stop flare at this point and nothing seems to be working. Tried multiple prescriptions with no luck and even simple diet isn't working. My last round of tests showed my inflammation was 11x what they normally see. I was also diagnosed with Hep A and have to let it run its course. Any advice regarding diet, supplements, alternative therapies is more than welcome. I just need to get things under control and my Dr has been relatively worthless.
Hi all, I figured I'd take a shot and ask others living with Crohn's how you manage your disease. I'm just over a year and a half since diagnosis and its really been up and down. I seem to be in a non stop flare at this point and nothing seems to be working. Tried multiple prescriptions with no luck and even simple diet isn't working. My last round of tests showed my inflammation was 11x what they normally see. I was also diagnosed with Hep A and have to let it run its course. Any advice regarding diet, supplements, alternative therapies is more than welcome. I just need to get things under control and my Dr has been relatively worthless.
Both my 3rd child (age 19, diagnosed at age 10) and my son in law (aged 35, diagnosed at age 33) have Crohn's.
In my daughter's case, she has NEVER been in "remission" based upon labs/path reports/imaging (always has active disease) BUT she has had periods of full functionality, mostly during the first two years post-dx.
My son in law's case was insidious; he had only mild symptoms that were attributed to IBS (he is himself an NP) until one day he had a full on "blowout" as we call it (you learn to use black humor when dealing with chronic illness), intestinal perforation around the ileocecal area. He had emergency surgery and a resection. I forget how much bowel was taken but it was significant. He was NOT put on maintenance meds afterwards which amazed me; he is being very closely monitored.
My daughter has been on all the meds except Cimzia; all failed to control her disease activity until she got on Entyvio (combined with 150mg daily of azathioprine which she's been on since 2013); she always responded well to prednisone and at times was on it for as long as 18mos. Entyvio is working fairly well, she has 2 jobs/attends uni but is always weakish and tired. There were times when she was bedridden so definitely an improvement with Entyvio.
Supplementary treatment. I can tell you liquid feeds (in my daughter's case, via NG tube) maintained nutritional status she would NOT, no way, have been otherwise able to maintain. Even when desperately sick, she avoided weight loss due to the liquid feeds.
Crohn's sucks, I wish I had better things to say about management/treatments.
Last edited by VexedAndSolitary; 07-27-2017 at 09:40 AM..
Hi all, I figured I'd take a shot and ask others living with Crohn's how you manage your disease. I'm just over a year and a half since diagnosis and its really been up and down. I seem to be in a non stop flare at this point and nothing seems to be working. Tried multiple prescriptions with no luck and even simple diet isn't working. My last round of tests showed my inflammation was 11x what they normally see. I was also diagnosed with Hep A and have to let it run its course. Any advice regarding diet, supplements, alternative therapies is more than welcome. I just need to get things under control and my Dr has been relatively worthless.
Marijuana. Seriously. It will work. Talk to your doctor. Or find a teenager to get you some.
I have heard that nicotine helps control symptoms. A friend's son in law smoked as a teenager and while in the Navy. He quit in his 20s and developed full blown Crohns, requiring surgery.
Not sure if one has to smoke cigarettes of if nicotine in patch form would work.
I have heard that nicotine helps control symptoms. A friend's son in law smoked as a teenager and while in the Navy. He quit in his 20s and developed full blown Crohns, requiring surgery.
Not sure if one has to smoke cigarettes of if nicotine in patch form would work.
This is a wive's tale; Crohn's is autoimmune in nature, nocotine would have to affect the immune system in a suppressive way for this to be valid.
Marijuana. Seriously. It will work. Talk to your doctor. Or find a teenager to get you some.
My daughter after going away to uni started using this ^^^ for the pain (which is chronic as she has a known stricture in the terminal ileum; needs surgery but is putting it off); she said it helps her deal with that aspect of it.
Marijuana. Seriously. It will work. Talk to your doctor. Or find a teenager to get you some.
My late husband suffered with Crohn's for over 30 years. 2 resections, the loss of the terminal ileum and several fistula's later the only thing that helped was marijuana. In 2011 he applied for SSDI and was denied. He hired a lawyer and was approved without having to go to court.
My late husband suffered with Crohn's for over 30 years. 2 resections, the loss of the terminal ileum and several fistula's later the only thing that helped was marijuana. In 2011 he applied for SSDI and was denied. He hired a lawyer and was approved without having to go to court.
Did it help his disease activity, or just the pain?
My daughter was so anti-recreational drug, as she had been on SO MANY script drugs for Crohn's, rec drug use was never a thing with her, but at college she met some other kids with IBD and they talked her into it, she said her labs/path/imaging are still bad but it takes away the pain enough that she can function, not double over and have to leave work.
I am wondering ( I know pretty much nothing about rec type drugs) if it has any benefits other than pain relief?
This is a wive's tale; Crohn's is autoimmune in nature, nocotine would have to affect the immune system in a suppressive way for this to be valid.
I only know what the person who had it told me. He said the nicotine masked his symptoms, or he would have been diagnosed earlier.
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