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04-12-2014, 10:08 PM   #1
mallowpufft
 
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Join Date: Feb 2014
Location: Harrisonburg, Virginia
Hi

I've been lurking for a while and finally decided to join and figured I should say "Hi" and share my story.

I was first diagnosed with Crohn's 12 years ago. It was semester break of my Jr. year in college and I hadn't felt well for the last month of the semester but wanted to wait till I got home to go to the Dr. I couldn't climb in to my lofted bed and just shuffled around like an old man for the last week and a half and was just drinking juice and eating a bowl of cereal every couple days.
After my last final I hopped in my car and drove from VA to PA where we were going to meet my extended family for an early Christmas dinner.

I honestly don't remember any of the dinner beyond asking my Dad to drive me back to MA after because I didn't feel well.
On that Monday my Mom brought me to the Dr who took some swabs and blood and gave me antiobiotics. The next day I couldn't even keep liquids down so off to the ER. After 8 hours of various tests from the basic bloodwork and urine dip test to a Xray/CT/Barium they still had no idea other than a large infection in my abdomen and my vitals were dropping.
I entered septic shock and they rushed me to surgery to drain the infection and figure out what was going on.
When I woke up they informed me that 18" of my small intestine had been removed and that I had Crohn's.
Crohn's wasn't a huge shocker as my Dad has it and had a resection when I was three and I grew up seeing some of what he dealt with, plus his little brother has UC.

I spent three weeks in the hospital recovering (due to the emergency surgery they did a full midline incision and only used 5 staples to put me back together) and spent Christmas in the hospital. After that I spent another three weeks at home in bed. When I called the college Registrar to drop out for the semester he told me I couldn't drop out without talking to my advisor. Called him up amd explained the situation to him. All but two of my classes were with him so he pulled some strings and I only dropped one class even though I was three weeks late getting back to class.
I had to have my wound cleaned, irrigated and repacked twice a day by a nurse as the staples had torn out the first week I was at home and I was being held together with straps (I forget the proper name for them; basically a partial corset that was taped on and laced up the front). That lasted from January till April of that year. I was on a 5lb lifting restriction the whole time and it made life interesting when my wound would get infected and I would have to get someone to run me to the ER.
I was initially on Asacol/Pentasa but that made me severly anemic and was put on just Imuran with PRN pain killers. I spent the next few years flaring regularly but then things regulated and Iife mostly went on until a couple years ago when I developed a large fistula. After reviewing my options I ended up on Humira in addition to my Imuran and that's where I've been for the last while.
04-13-2014, 01:13 AM   #2
glory_h
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Join Date: Sep 2011
Location: Portland, Oregon

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Hi! Just curious, how do you think your current treatment is working for you?
04-13-2014, 08:25 AM   #3
mallowpufft
 
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Join Date: Feb 2014
Location: Harrisonburg, Virginia
Hi! Just curious, how do you think your current treatment is working for you?
It was working well enough for the first six months of Humira but I wasn't seeing the improvements I was hoping for. A couple people that I kmow with crohn's have gone gluten free with good results so I decided to give it a try. I don't always stick to it, but when I do life is usually decent. Little to no random pain and I can be more than five minutes from indoor plumbing.
Due to the fistula, mountain biking results in blood after 3-5 miles, so I can't do much of that, which sucks. But I skiied four to five days a week this winter (may have used some extra meds when the joints hurt too much) and I did a few over night back country camping trips last fall. Once the mud dries up some more I'll hopefully get a few more of those trips in.
I do still occasionally get some debilitating pain but my GI is nice and lets me keep percocet on hand on the condition that I call him if I take it more than three days in a row. I also still have a lot of watery stools if I don't eat properly and I swear that if it wasn't for Costco, I'd be figuring out how to get Charmin to deliver to my house.
04-13-2014, 10:02 AM   #4
Kero
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Join Date: Dec 2013
Location: Edmonton, Alberta

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Glad you found the board! It's an amazing place to get info, and talk about stuff you normally couldn't/wouldn't talk about to other people \the best thing about this board, is it seems pretty much anything that is talked about, at least one other on here has gone through it
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