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How do I get researchers to include MY personal experience with using Cannabis for Crohn's symptom relief?  I believe they need to study intake of the drug through water filtration.  Smoking paper is unhealthy, and water filtration also presumably takes out ash, dust, and debris, from the smoke. Yet, every research trial depends on any other delivery system except simple water filtered smoke.

I was diagnosed in 1985.  I had a anal fistula in 1984, and sore guts with a lot of diarrhea leading up to this, also an Iritis.  This is a SYSTEMIC DISEASE.  It's NOT just IBD.  I've personally seen BOTH sides of the Cannabis issue, dealt with the social stigma, guilt, and anxiety produced by random drug testing.  These have been the only true, unmanageable downsides in my personal experience.  I work in Engineering Support, have a high IQ, good work ethic, do not have attendance problems, etc.  I do not take any other "street" drugs, and rarely even drank alcohol from 1985 through 2019... now I drink about 5 beers or drinks a week on average, and these are single-per-day type drinking, not binges.  I am angry and frustrated by the lack of truly unbiased, well-designed studies.  No one has ever asked ME how I feel about the "approved drugs" and how they have adversely affected me vs using Cannabis through water filtration, for nearly 40 years.  I've begged specialists for years to take this seriously, but no matter how they may personally feel, they will not push for the study I'm asking for, apparently.

I was treated with Prednisone and Sulfasalizine in the early years.  When I complained after a few years of Sulfa use, that it didn't seem to help and might actually be preventing me from improving, I was told "well, it's been shown to only be effective in about 15% of patients..."  That was the late 80's.  I stopped treatment with pharma drugs after that, and only used diet, a strong multi-mega vitamin at half the recommended dose, and up to 12 hits of Cannabis daily, with meals and at night.  Aside from emotional effects which stem from the legal and social issues, it's been a positive aid for my symptoms.  I did very well managing my lack of appetite, hyper, twisting intestines, inflammation, gas, and even acid reflux this way. A Cannabis routine (ALWAYS water-filtered) while never curing anything, has provided an appetite when I had none, calmed my clenching guts, reduced gas, helped with occasional heartburn (reflux?) symptoms, and reduced pain indirectly from all of the aforementioned.

Around 2001, I had my first full colonoscopy.  The doc didn't believe I had Crohn's for 16 years because I "looked too good."  When he verified the fact, he tried me on Pentasa (or was it Asacol?)  The dose he put me on initially gave me bad diarrhea for a week... I cut the dose in half and ramped up, against HIS better judgement, but it worked.  There was some improvement in my intestinal lining, but when he said I'd need a monthly blood test to check for liver and/or kidney damage, I said thanks... but no thanks.  In about 2012 or 13, I finally had to have something more done.  I saw a Gastroenterologist for a Colonoscopy, and he supported my decision to continue without standard tx. I agreed to try something different in 2014.  He first prescribed Azathioprine, which I had an allergic reaction to; it gave me severe joint pain, fever and chills.  I couldn't walk for days. That same professional, who I respect and appreciate, did not believe Crohn's was systemic, let alone something that could be diagnosed via biopsy.  He also told me I should not have needed all those blood tests with Pentasa.  Doctors don't always agree with each other, obviously.  In 2015 we tried En

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 In 2015 we tried Entyvio, and it was the drug I'd been waiting for, for years.  At that time, it had just been approved for use in the USA, and I saw it had a much shorter list of side effects than things I had seen before.  (One reason I avoided mainstream treatment for so long was lack of trust in medications' effects on my liver and kidneys, and I did my best to preserve my "body filters" as long as possible, knowing I was likely to need something mainstream eventually.)  Entyvio helped heal much of my sores, but scarring caused a stricture.  In 2018 had a surgery to remove 15cm of transverse colon, with a "splenic knockdown" also.  This has been a big help, but Cannabis use still eases my symptoms in ways Entyvio has not.  Proper use of so-called "sativa" vs "indica" strains is also important in my experience.  I'm recently learning of a connection between Crohn's and a mild form of bipolar, and I will vouch for the indica strains being effective against anxiety, which has occasionally been an issue, more so now that I'm older. Sativa strains, particularly with coffee drinking, can trigger some anxiety for me.

I can document virtually every medical encounter I'm speaking of, including doctors' names and treatments.  One expert I saw at the Cleveland Clinic, around 2008-2010 time period, actually suggested I might want to participate in a cigarrette smoking trial they were studying.  He didn't seem to comprehend that I had NO interest in any stimulant like nicotene.

I wish someone would include MY experiences in their studies.  I'm left disgusted by the lack of credible research into something I know personally has apparently improved my quality of life.  I had a wife for 29 years; she passed in 2021 from liver cancer, and I can't help thinking long-term use of prescribed drugs for allergies and arthritis, along with diet, were the cause.  She never smoked or used Cannabis or anything else, and only drank about 2 glasses of wine PER YEAR.  I've watched doctors hand out opiate pain pills like candy, as well as other things that we learned years later were not a good idea.  And yet, what I have found effective is not acceptable?  I find it hard to respect the attitudes infused into our society against responsible cannabis use.  It's nearly as important to me as insulin is to a diabetic, or "maintenance" meds for blood pressure or cholesterol management seem to be for folks with those issues, so it makes me angry that no one takes MY personal journey with Crohn's seriously, when it comes to research.