This has been an entry I have meant to write since I purchased this blog space on WordPress, but I haven’t really managed to put what I want to say down in words as of yet. I came by Crohn’s Disease honestly (not sure there are other methods other than sudden trauma, sickness or stress, and in my case genetics). So why now, well I was fully diagnosed in 2005 after I graduated from University (I had all ready graduated from a 1 year college program at this point with some interesting developments in my illness & symptoms). Up until now, that had been the last year of a major flare up and a follow up colonoscopy. I haven’t had a flare up, but since it has been 8 years, and a new gastro Dr, and some changing symptoms we felt it best to have a poke round.
Part of why I am writing is that as a thirteen year old tween, I felt pretty different, and uncomfortable, and had some unpleasant bouts of depression, and low-ish self esteem. But Crohn’s isn’t a reason to give up on everything you enjoyed before being affected by it. Mind you, while I had a nasty and confusing case, I haven’t needed a Brookes ileostomy, or a colostomy bag (so I count myself as lucky). I do have a very ulcerated bowel, a mess of a Duodenum and ileum. The next step up in prescription medication are the Biologics, and that’s about $25,000 a year. So yes even with the pain, and blood and threat of a stress induced flare up I count myself lucky.
You can go to school, play sports (I wrestled and played soccer in between flare-ups in high school, and played Rugby and rowed a little bit in university) I also sang, danced and played trombone from grades school through until university. All in all, over my high school career I didn’t miss that much time to illness, although my roughest patch from what I recall was about 1-2 months off school. I had good enough grades prior to, and was doing homework issued to me by some understanding teachers, that I was able to pass on to the next school year uninterrupted. Yes there were a lot of sucky, sad, depressing weeks and months interspersed in there, but it gets better with age, and as you build character and gain a better perspective on what really is important. As shitty as I felt, I didn’t have cancer, and more likely than not this wasn’t going to outright kill me. Even when it felt like it was. So chin up. Find a hobby you can do sick or healthy. Drawing, painting, singing, playing a small to mid size instrument. These things will keep you in a happy place when everything else goes to pot.
I was about 13 years old when I had my first bout. I had been really ill over the Christmas Holidays (as was the usual case for me when vast quantities of food was available) I think I had a crazy flu, that led to some nasty night sweats and hallucinated dreams, and general unpleasantness. A few months later while on a school graduation trip (Grade 8 Wonderland trip). I ate some questionable items from a snack bar and then spent about 5 hours in the mountain toilet feeling like a balloon was inflating and then constricting in my bowels. By far not the worst bout I’d had, but for a first introduction it was enough. Then the big symptoms sort of went away, and I spent a great amount of time feeling bloated and uncomfortable after every time I ate (anything, could be fruits, vegetables, meat, poultry, sugar, starch, water, rice etc etc…) all of it left me sore and in some sort of gastric distress. By the time I was sixteen, and in high school, I was going to the toilet about 16 – 20 times a day (Gas, mucous, and lots of abdominal pain). I had a few odd moments of throwing up in my principals car one time when he was the only one available to drive me to my Dr’s office. (Did I mention that at that time I lived in rural Ontario (Erin. Pronounced Air-in to those who weren’t born there, and Ear-in to those who were). Any way, I had a fair few occasions where I had to rush to one Doctor or another for a shot of Demoral or whatever in my hip/butt.
I was put on Diecetel, and had a stash of some other prescription that dissolved on the tongue and numbed everything from my mouth to my anus. (Levsin I believe) or some such like that. I had a few colonoscopy’s and gastro-oscopy’s (4-6) of them between 15 -18 years of age, and they all turned up inconclusive. Seems my body does a good job at camouflaging any internal damage. Later I would also find out that the effects of Crohn’s on your innards is very similar to that of Celiac Disease. Although with drastically different methods of control and containment.
There is about 20 years of stuff I can tell you. Gory details, and graphic explanations of things that happen to your body. Take vitamins early on, and although you may vomit an awful lot, protect your teeth with as much vim and vigor as you can muster. Hair grows back, and looks a whole lot nicer after a lengthy flare up, but your teeth & bones not so much. In between flare ups you should really try to maintain a work out regimen. Stay positive, and stay healthy.
Anyway, with a scope to under go tomorrow, I just thought I would take some time and put some thoughts down on paper, such as it is. I’ll have more to say on this at a later date.