Hi All - I just joined the forum and saw that I should post my story, so here you go!
I was diagnosed with Crohn's disease in 1999 just after my 15th birthday. I had been feeling 'sick' for a few months off and on, and my doctor cited the 'flu', 'allergies', and other random events to try and give my mom piece of mind as to why I was missing school feeling sick. After a couple of months we went back to the doctor at which point he suggested to my mom that he thought I might be faking it and it may be a problem with bullying at school (which was laughable and totally not the case). After that, she insisted that I get referred to a GI doctor, and after our 30 minute initial consultation he was convinced I had CD and just needed an endoscopy & colonoscopy to confirm.
Well, he was right, and the inflammation and scar tissue was so bad in one spot that they performed surgery 3 days later to remove 6 inches of intestine at the terminal ileum (where small and large intestines meet up). Without going into a ton of detail right now, I've had 2 other surgeries. 1st was a stricture plasty at the site where the small & large intestine were rejoined, and the other one was to fix an abscessed fistula (? not 110% sure on that one).
Anyway, after the surgeries and trial and error on a bunch of different meds, I finally starting feeling better with Imuran... I graduated high school at 5'8" 110 lbs (and as a guy who played sports my whole childhood, I can relate to others who are dealing with similar issues of loss and being 'small'). Over the years after high school & college I slowly regained a 'normal' life, and am now 5'10" 165 lbs.
Eventually the effectiveness of Imuran tapered off and I found myself back in the hospital a few times with brutal cramping, weight loss, skin/mouth sores, etc. At this point I had another 'cycle' of prednisone (which has always worked to calm things down for me), and then started Remicade shortly thereafter (in 2009?).
Remicade has definitely given me the most prolonged 'good health', than any other drug I've tried to date, and with the least side effects. My continuing problem over the past few years, since on Remicade, has been just trying to prevent flare ups, and keep the washroom visits to a minimum.
In day to day life, I pretty much eat whatever I want, but staying away from certain seeds/grains, corn, and veggies/fruit with a tough skin. I use the washroom way too many times a day, which tends to be my biggest problem. It's always worse in the morning too (4 times before 8am usually - and I'm up at 5:30). I tend to worry about 'making it to work' as I usually have a BM right before I leave, and end up having to stop at a gas station every morning on my way to work. The commute is only 25 - 30 minutes, but in the morning, especially if there's heavy traffic, it gives me great anxiety. Good thing I have a decent attendant at the gas station every morning that has no problem giving me access
.
Anyway, that's me... I'm in a flare right now, but this post is getting a little long so I'll cut it off here. One question though... Does anyone ever get sores in their mouth & food tastes a bit off? To me, it's probably just a symptom of the entire GI tract (mouth to butt) being a bit angry and inflamed.
Oh and also, I've always been interested in medical marijuana to help control my symptoms but am not sure how to bring that up with doctors or how to get started. (I'm a Canadian living in Alberta).
Thanks for reading and I look forward to learning more about you and your stories as well. Cheers.
I was diagnosed with Crohn's disease in 1999 just after my 15th birthday. I had been feeling 'sick' for a few months off and on, and my doctor cited the 'flu', 'allergies', and other random events to try and give my mom piece of mind as to why I was missing school feeling sick. After a couple of months we went back to the doctor at which point he suggested to my mom that he thought I might be faking it and it may be a problem with bullying at school (which was laughable and totally not the case). After that, she insisted that I get referred to a GI doctor, and after our 30 minute initial consultation he was convinced I had CD and just needed an endoscopy & colonoscopy to confirm.
Well, he was right, and the inflammation and scar tissue was so bad in one spot that they performed surgery 3 days later to remove 6 inches of intestine at the terminal ileum (where small and large intestines meet up). Without going into a ton of detail right now, I've had 2 other surgeries. 1st was a stricture plasty at the site where the small & large intestine were rejoined, and the other one was to fix an abscessed fistula (? not 110% sure on that one).
Anyway, after the surgeries and trial and error on a bunch of different meds, I finally starting feeling better with Imuran... I graduated high school at 5'8" 110 lbs (and as a guy who played sports my whole childhood, I can relate to others who are dealing with similar issues of loss and being 'small'). Over the years after high school & college I slowly regained a 'normal' life, and am now 5'10" 165 lbs.
Eventually the effectiveness of Imuran tapered off and I found myself back in the hospital a few times with brutal cramping, weight loss, skin/mouth sores, etc. At this point I had another 'cycle' of prednisone (which has always worked to calm things down for me), and then started Remicade shortly thereafter (in 2009?).
Remicade has definitely given me the most prolonged 'good health', than any other drug I've tried to date, and with the least side effects. My continuing problem over the past few years, since on Remicade, has been just trying to prevent flare ups, and keep the washroom visits to a minimum.
In day to day life, I pretty much eat whatever I want, but staying away from certain seeds/grains, corn, and veggies/fruit with a tough skin. I use the washroom way too many times a day, which tends to be my biggest problem. It's always worse in the morning too (4 times before 8am usually - and I'm up at 5:30). I tend to worry about 'making it to work' as I usually have a BM right before I leave, and end up having to stop at a gas station every morning on my way to work. The commute is only 25 - 30 minutes, but in the morning, especially if there's heavy traffic, it gives me great anxiety. Good thing I have a decent attendant at the gas station every morning that has no problem giving me access
. Anyway, that's me... I'm in a flare right now, but this post is getting a little long so I'll cut it off here. One question though... Does anyone ever get sores in their mouth & food tastes a bit off? To me, it's probably just a symptom of the entire GI tract (mouth to butt) being a bit angry and inflamed.
Oh and also, I've always been interested in medical marijuana to help control my symptoms but am not sure how to bring that up with doctors or how to get started. (I'm a Canadian living in Alberta).
Thanks for reading and I look forward to learning more about you and your stories as well. Cheers.
