Patients Crohn's disease
Topic of the discussion
Posted on 9/1/18 4:24 AM
I'm fed up with the way I've had to hide my treatment from my employers, my friends, and most of my family for over 30 years.
Suffice to say I believe I owe my health to long term, chronic cannabis use. And I am angry that is taking so long to get the government as well as the "establishment" medical community on board. I'm tired of their fears impacting my health and life. And I'm angry that my medical choices hurt my ability to have a career in Manufacturing Engineering. I also think it's very important to note that I have not now, nor ever had a substance abuse problem. No alcohol, no tobacco, no street drugs, no over the counter medications or prescription medications. Aside from MJ, I've been drug-free for over 25 years.
- Diagnosed January 1985
- Treated with Prednisone for flare-ups, Azulfidine for "maintenance"
- told I would have to stick to a "low residue" diet, meaning no fresh veggies & fruits for starters.
- told there was no cure, so I would have to endure this new "normal" indefinitely (no corn? forever? I would NOT accept that, and I began a plan to heal myself any way I could find, since they could not do it for me. I firmly rejected any idea of surgery being something I would find helpful, since much of my problem seemed to be a hyper-gut that would not absorb enough. Shortening that tract in any way seemed to me would make things worse for me, and thankfully my condition did not warrant such action.) I have been able to gradually re-introduce just about anything into my diet, simply by paying attention to what my body craves, and what it hates. What it hates, I give it very little of, and sometimes it decides it's OK for me to have that. My overall rule of thumb is "everything in moderation." And I do mean virtually EVERYTHING I might crave is not off the table. Sure, I still have to go easy on acidy foods, particularly tomato-based products, but about 4 to 6 oz. of not-from-concentrate orange juice is a staple food I have every morning, and that's an acidy food.
- secretly used cannabis before meals and at bedtime
I was diagnosed in the first week of 1985, after suffering for months from unexplained gut pain, bleeding, nausea, an anal fistula that was taking long after surgery to heal, confusing the Dr., an Iritis (inflammation of the iris.) and even anxiety and depression I now feel were connected even back then. My life came crashing down over a 9 to 12 month period, culminating in a 17-day hospital stay where my fire-engine red bowels were given time to rest. Nothing by mouth for 10 days, slowly progressing to a soft food diet & education on what I could no longer eat or drink.
I had tried marijuana several times a couple years prior, and finding that it soothed my twisting, clenching gut, started using it a lot more in that last year before diagnosis. I used to be confused over whether it had contributed in some way to my developing Crohns, but over time have finally been able to dismiss that as being highly unlikely, aside from any additional stress I caused myself worrying about it.
I chose an internist over as gastroenterologist to continue my treatment when I was diagnosed, mostly because the gastro seemed waaay too happy to have a new patient (to experiment with?) as opposed to the quiet, reserved doctor I came to trust. Remember this was 1985, and from all I learned, doctors had a poor understanding of what was going on let alone how to treat it.
- by around 1990, I had told my doctor about the cannabis, and he was supportive - off the record of course.
- 1990's, REFUSED to continue using Azulfidine because I had a suspicion it was doing little to nothing, preventing me from getting sunshine, and somehow preventing me from further improvement.
- my insurance changed, and I bid good-bye to my doctor as well as "mainstream" medical treatment.
- 1990's settled into a routine of PBTBOJ mornings, & eating and drinking what my body craved. (PBTBOJ = Peanut butter & toast, bongs, & orange juice.) along with a single "multi-mega" vitamin every week day. This is a product very high in B-vitamins (seek product "MAX for Men.") Taken as directed, it is well over the RDA's of just about every vitamin you can think of. I did not take as directed - I took 1, not 3 per day - and I probably didn't drink enough fluids with that, mostly because of my tendency toward liquid stools. I did have a MD I would go to once in awhile, but just for checkups, and I was pretty healthy overall. VERY IMPORTANT to note, I never used "joints." That paper will kill you; stick to WATER FILTRATION or use the newer methods that vaporize cannabis compounds without combustion.
- 2003 first colonoscopy. Went to new Dr. seeking a 'scope and to check in on what better treatments might have become available, thinking maybe I could even leave the MJ behind, thus escaping the stupid "WAR ON DRUGS" and improve my career choices. Dr. didn't believe I had Crohns', told me I "looked too healthy." At this time I noticed the science done was now saying Crohns' patients were more likely to develop cancer than UC patients - a complete reversal of what I had read in previous years. Dr. verified Crohns', put me on the highest recommended dose of Pentasa. I sh#t my brains out for almost a week trying to use Pentasa, requested I try a lower dose & ramp up. Dr. said it shouldn't work that way, but go ahead and try. Well it did work, I tolerated the drug, but when he told me I would need a monthly blood test to monitor my liver & kidneys, I balked. I decided if it was potentially that bad for my filter organs, it wasn't a good idea. So that doctor refused to treat me further, and I said good riddance, I will probably need those organs later on if I have no other alternatives. My mild to moderate case did not warrant such treatment IMO.
- 2010 - One large kidney stone, probably from the vitamins & my failure to properly hydrate over the years. Or possibly it was caused by 8+ years of Sulfasalizine use. It took 3 "lithotrypsy" sessions to get the kidney stone dissolved. I used to suffer from lack of energy, but oddly I no longer felt so drained of energy after this and I stopped taking the vitamins. To this day, I no longer use the vitamins, and have not used sulfa of any kind since the Pentasa experience.
- 2011 - discovered the hard way, now had a sensitivity to the sight or thought of blood where no such thing had ever been an issue before. I had 3 to 6 episodes of "syncopy" between 2011 and 2015. At least 3 of these I was not sure were not brought on by the cannabis
- 2013 - 2015 - on turning 50 in 2014, I had some severe anxiety develop, and drastically cut back on the MJ for days at a time. Where I previously consumed on average 3 "hits" per session, I now had either no desire for it at all, or one "hit" was enough. In retrospect I believe I had anxiety and depression for years, but had accepted my mental status as "normal as most people." As long as I can remember I have had a "tickle" sensation in my head, well that "tickle" turned into a firestorm the same week I turned 50. I sought help from my GP, but no one took it seriously enough to prescribe me anything until 2015.
- 2015 due to an increase in my pains and symptoms I began seeing a gastroenterologist. I saw him once somewhere between 2008 and 2010 for my second colonoscopy. He noted the disease had increased and described it as moderate. He put me on a low dose of Citalopram (Celexa) to try to treat my anxiety, and tried me on Azathioprine (Imuran) for Crohns. I had a bad reaction to Imuran - I spiked a 104 degree temperature, other flu symptoms, and it attacked my joints so badly I couldn't walk properly for about a week after discontinuing. I was on it for 2 days.
- 2015 to 2018 - THANKS TO ENTYVIO I have seen a marked reduction in my disease. After the Imuran disaster, I was free to take this new (to the USA) drug, and I love my gastro for being able to bring it to me. During this period, Ohio started down the path of being a legal medical MJ state. I finally am now able to seriously question whether it's worth continuing with cannabis, both due to a better Crohns drug I feel I can trust NOT to give me cancer or kill my filter organs, and due to the fact that my current employer's random drug test policy finally caught up with me. Since medical MJ laws do not affect company policy regarding MJ use, I've been given a choice of either stopping it or losing my job. As I write this I'm recovering from a surgery to remove a "stricture" in the transverse portion of my colon, and I'm using my recovery period to gauge whether I should no longer use cannabis, or find another line of work that doesn't have this stupidity forced upon them by the industry.
My life, My health, MY decisions. Period.
Beginning of the discussion - 9/3/18Cannabis saved my butt. https://www.carenity.us/forum/crohns-disease/your-opinion-on-crohns-disease-treatments/cannabis-saved-my-butt-419
Posted on 9/3/18 11:51 PM
Thank you for sharing your experience with cannabis and being so open about your Chron's diagnosis and how cannabis had helped you. I know in many discussion groups for other conditions here on Carenity, marijuana use is a hot topic for relief of pains and/or symptoms. I am sure your experience will be of great use to them also.
I am also glad to hear that you found a medication that is helping in reduce the disease.
Please keep us updated with how you feel and whether you are able to no longer use cannabis thankfully to that medication and what you decide to do also in regard to your employment. I am sorry to hear you are in such a situation.
Posted on 9/7/18 7:49 PM
Awesome story and so glad to hear @Userlevel6 .
So you were using cannabis prior to being diagnosed with Chrons? Was it prior to any of the symptoms of Chrons began to present themselves?
Was it mostly the pain that cannabis helped you with? What else did it help with related to Chrons or in general?
I live in a state where it is NOT legal. Do you think CBD alone has the same or similar benefits? have you ever tried CBD alone?
Posted on 10/29/18 6:49 PM
I used cannabis on occasion before Crohn's diagnosis. In hindsight I realize I had mild symptoms as a child, mostly in the form of frequent mouth sores. Virtually every time I got a scratch inside my mouth, I would develop a sore. Those sores stopped happening after puberty, then apparently started developing in my intestinal tract.
The cannabis helped with the pain but not a lot. It helped me ignore the pain. Mostly it has helped with appetite and gut spasms. My gut would clench up causing cramping and too-frequent defecation, and I believe that contributed to frequent diarrhea and gas. Cannabis relaxed my hyper digestion, allowing nutrition to remain in my system longer, promoting better absorption. The only downside was having to hide my usage, feeling guilty about it, and having anxiety about it.
I have tried CBD alone. I'm still on the fence about benefits, but I will say it seemed to help reduce belching I experienced while recovering from my surgery to remove a stricture. I will also say I think my state of Ohio is trying to regulate cannabis out of existence, effectively thwarting the will of the voters that got medical cannabis legalized. The board of pharmacy has taken complete control and is ruining the possible benefits with their ridiculous restrictions. For example, I tried the various new forms of consuming cannabis - vaping oils, vaping dry herb, and edibles - and I have found all three to be lacking in effectiveness compared to smoking THROUGH WATER FILTRATION. Note that all the studies I've read that regard smoking cannabis used the joint method, and I believe smoking PAPER will hurt you a lot more than using just the plant THROUGH WATER FILTRATION. (The board of pharmacy can just kiss my bloody white a... 'scuse me... butt. They are wrong, wrong, wrong, based on my personal experience of over 25 years. As usual, this is an establishment grab for power and money, and amounts to medical tyranny.)
Posted on 11/29/18 1:52 AM
@Userlevel6 thank you for sharing. I have IBS not IBD (thinking I may have IBD though) and I am on a strict diet by the doctor which has at least made life bearable and I don't have the constant constipation, bloating, and pain I used to experience. However, any time I go to introduce a new food into my diet (Which the doctor said I can begin to do) I go back into pain and either constipation and bloating or diarrea.
Wondering if cannabis would help with allowing me to introduce food into my diet without those side-effects... any opinions?
They just legalized medical here during the mid-terms... not sure how to get access to it, but your story sound like it may be good for try.
Posted on 11/29/18 1:54 AM
@Userlevel6 Also what was your final decision? did you give up cannabis use?
Posted on 11/29/18 1:13 PM
So far, getting along well without my previous daily cannabis use. Not developing new symptoms post-surgery, so far so good. Still have had a couple hits here and there on weekends though.
Posted on 1/18/19 10:31 PM
Glad to hear you are doing pretty well without cannabis @Userlevel6, that is great to hear.
Posted on 1/19/19 6:38 PM
Thanks Lee_R ... new issues have surfaced now though. Little bit of gut pain, new insurance doesn't cover Entyvio & I'm due for another infusion... and another episode of syncope has prompted me to get some tests. So far, primary doctor leans toward a neurological vs cardiac issue, but neurologist is thinking cardiac. Got an echo cardiogram yesterday, should be interesting to hear the results. I watched the screen for part of it, and got the impression I might have a minor heart valve issue... but I know nothing really. The tech seemed to be measuring a gap where it looked like the valve should be fully closed at that moment. I feel like a hypochondriac, but I didn't want to be the guy that ignores it & just suddenly drops dead either!
Posted on 9/18/19 3:56 AM
Thank you for sharing @Userlevel6
Are you still thinking that ENTYVIO has managed your crohn's disease symptoms as well as cannabis had helped you?