Me and Crohn’s Disease…

One of the auto immune diseases I have is Crohn’s disease.

I don’t know how to explain it. I’ve never been sort of a religious pill taker having been raised by my mother, whom we spent a lot of time telling got her doctor certificate from the readers digest, but mom was all about supplements and trying to negate the possibility of dementia….. over the years she probably took $1 million worth of supplements.


I have my regular meds blister packed by my pharmacy… a lot of people have their vitamins blister packed as well but one of the meds I take, is six huge horse pills, which takes up about half of the blister pack so I don’t have my supplements added to them.   Being neurodivergent I have had to work out a routine that I kind of have for myself about taking pills….it started out with me not allowing myself to have a cup of coffee in the morning until I brush my teeth and take my pills and I’ve been doing it for so long that it’s just second nature…. I don’t think I really wake up for it anymore..


Here’s what I feel about the vitamin D situation…. when I moved to Victoria my Crohn’s was the worst it’s ever been….I was sicker than a dog, my stress levels were through the roof and i was in a flare that had lasted a little over a year.   Eventually the inflammation hit my hips and I was unable to walk….couldn’t even get myself to the washroom.  My mom called an ambulance and had me hauled off to the local hospital where they physically draining fluid from my hips…. You should’ve seen the size of the needles…gak! 


I was in the hospital about a month and during that time was when Mal told me what Linda had suggested about Vitamin D.  I of course immediately pooh-poohed the idea because I’d spent my whole life living with a person who used to hide lecithin powder in our peanut butter. 


It was also during that hospital stay that I discovered a whole raft of over-the-counter meds and clinical meds that I can’t take. I can’t take Demerol. I can’t take codeine I can’t take ibuprofen. I can’t take/use most NSAIDS… no kind of anti-inflammatories and most sleeping meds… which really sucks because the doctors kept trying to put me on anti-inflammatories trying to get my body to stop flaring and for the longest time and they didn’t connect to the idea that what was going on in my joints was connected to my Crohn’s.  

Eventually through that hospital stay I became the patient of an amazing woman who was a gastroenterologist, and because I was unemployed and so sick she gave me the meds I needed to take for my Crohn’s and for a couple of years and she gave me the meds religiously every month.   The med that I was taking at that time was a drug called Salofalk that is also known as pureinethol or 6MP.  And I took a shit ton of those pills for years….also, for some reason the manufactures of salofalk would stop making the pills every year in September so by the end of the year everybody was scrounging and back in flare (I was getting my winter meds through a friend that worked in a pharmacy in Minnesota for cripes sake)


Fast forward to another conversation,  I would suggest in the early 2010’s with Mal when she reiterated what Linda had said, and suggested, I should be taking at least 3000 units of vitamin D a day.  I discussed it with my gastroenterologist, who said it can’t hurt…. so I started taking one or 2000 units of vitamin D when I remembered, there wasn’t any kind of regularity to it.  


Within six months I was in remission, no more mucus, no more bleeding but best of all no more pain….it seem that the vitamin D and the Salofalk in combination was what my particular Crohn’s disease needed.  


I’ve had a couple of my minor Crohn’s flares in the year since, but nothing like they were before.  The challenge with Crohn’s disease is that the only organ in your body that they don’t think can be affected by Crohn’s is your bladder but it can affect everything else and no two people have the same disease which makes it harder for Western medicine to get on top of.

  
I truly believe that the vitamin D I take is the reason I’m walking still, and no longer incontinent.  Which could be a really big deal. (If ya get my drift) As a result of my email exchange with Linda I upped my vitamin D intake to 5000 units a day… My biggest blessing I guess considering how much stuff I have to take is that I can take a fistful of pills at once.  I don’t know that I would be as diligent if I had to take all those bloody things one at a time.

About Wyzwmn

old cranky good pal
This entry was posted in Uncategorized. Bookmark the permalink.

Comments are closed.