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Crohn's Disease Forum

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Joined
Apr 6, 2014
Messages
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Location
Mississauga
Hello, my name is Dillon. I am 22 years old and was diagnosed with Crohn's disease January 2014 when I went to the hospital to check out a worsening pain near my appendix. A ct scan revealed severe inflammation around my appendix and the following colonoscopy and biopsy confirmed Crohn's. I have been prescribed Entocort for roughly a month, moved to prednisone, now azathioprine with a tapering of the prednisone. The only relief of the constant lesser painful inflammation has been from a bag of steroids taken via IV because I went to the ER seeking aid instead of the blood lab for some tests to monitor the affects of the azathioprine. This relief lasted the remainder of that day and into the afternoon of the following day, my friend said he hadn't seen me walk that fast in months, no constant inflammation and no sharp crippling inflammation. The steroids wore off and the prednisone is not a substitute and so ended my first break from my 4 month flare up. Considring giving up on medications, going on disability as I keep missing days from work and asking my GI and physician to discuss cannabinol substitutes because these chemicals are having too many side effects: extreme fatigue with 0-4 hours sleep a night ( normally falling asleep between 8-11 and awake between 12-4 every night trying to get comfortable enough to ignore the pain(no progress other than laying on my side induces the worst part of my flare up and laying on my back as well but less intense and slightly relieving of back pain, laying on my stomache is basically the closest thing to feeling relief as I can get, but not enough to sleep), worsening of neausia, vommiting, diarrhea, and abdominal pain, muscle pain developing and worsening in lower back, red dots on my arms have begun appearing, a tennis ball sized bruise is remaining from my IV of steroids and saline (combination of azathioprine slowing down my bloods clotting ability and the alcohol injected through the IV to sterilize it acting as a local blood thinner left the bruise gaining in size for 4 days from an IV pin hole to the tennis ball sized bruise). I am finishing my second week of azathioprine with my second set of blood tests coming up Tuesday if I can manage to keep myself hydrated enough to keep it from another ER visit. It seems I've lost just over 10 lbs in the two weeks I've been on azathioprine and this is where I am now. Thanks for giving me a place to share.:ghug:
 
Hi Dillon! Glad you found the forum. I was diagnosed at same time as you, so I can really feel for you. I have been afraid and sick and hurting for years, and this forum has been so informative, not to mention comforting. I wish you all the best.
 
Hello Dillon

I'm sorry to hear that you have been struggling so much :(.

I know how hard it can be to feel like nothing is working, it took a long time for me to get a diagnosis and in that time I tried a lot of different treatments (none specifically for crohns in that time though), so I know its frustrating and horrid.

Unfortunately, Crohns is a tricky customer, and there aren't any quick fixes, many of the medications take a little while before they begin to work properly, and this can be for a number of reasons. Two weeks isn't really that much time for a drug like Azathioprine (Aza), sometimes it can take a month or two to work, which I know is a really long time when you're sick, but it can be more than worth the wait if it turns out to be useful.

I understand that the side effects are nasty, especially the insomnia from the steroids, the good bit is that once you find a maintanance medication that works for you, you should be able to stop the steroids, which should greatly reduce side effects. If you can't get on with Aza then there are other medications in the same class which you may find more effective. These include 6MP and methotrexate.

I can understand you wanting to get rid of the medications, the lists of side effects are horrible, and it can seem like a lot of chemicals to be subjecting our vulnerable bodies to, and it is completely your choice if you don't wish to use them. What I will say though, is think carefully about it, the risks of untreated Crohns can be far worse than the risks of the medications, for some, these medications save their lives, for others, it is the only way to get back into some sort of normality, for others, it is the only way to avoid complex surgery. I'm not trying to scare you or push the meds on you, I just want you to be aware of the risks to your body if you do decide not to take medications, I'd hate to see you suffer any more than you already are.

If you have any worries, please come talk to us, we have a lot of very well informed and experienced members, who will do their best to help with anything they can. We are not doctors, we don't have every answer, but we are fighters just like you.
 

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