Crohn's Disease Forum » Your Story » My Experience

05-20-2014, 12:11 PM   #1
eastcoast's Avatar
Join Date: May 2014
Location: Massachusetts

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My Experience

Hi everyone, I was diagnosed with Crohn's disease in January 2013. My symptoms started out as sharp pains right under my sternum and just slight off and on pain in my ileum. Everyone though it was just acid reflux and told me to take some Tums, but the pain never went away. After two weeks I went to my PCP and they sent me to the hospital to get a CT scan. Then I had a colonoscopy and an endoscopy with my GI at the time. She was awful. She diagnosed me with mild Crohn's and put me on 7 different medications at one time. She told me the pain would never be any worse or spread. I changed GI doctors after that and have had numerous CT scans, MRIs and xrays done. All with the same result, that I had inflammation and narrowing of the small intestine. The pain had gotten so bad in my stomach that I was afraid to eat anything and I had no appetite anyway! I ended up losing 15 lbs. in 3 months and I already have a small frame. My GI had me take Carafate for my stomach and put me on prednisone for the ileum. The Carafate was like a miracle drug for me. (After a year and a half of being on medications for this disease, it is the only drug that actually healed something and made me feel better.) Unfortunately though, my Crohn's got worse while my stomach got better. I've been hospitalized twice, taken Asacol, numerous doses of prednisone, many doses of Cipro, Flagyl, Humira, and now I'm on Remicade. My GI doctor isn't quite sure what to do with me anymore because everything he's tried doesn't work and had me see a doctor at Beth Israel Deaconess for his opinion. They don't want to have me get surgery because I'm only 27 years old.

I now have a constant, massive, swollen, painful lump in my lower right quadrant the size of my hand, a UTI and a cyst in my right ovary. Of course all of these problems happen in my lower right side and it is so swollen and tender! My GI tells me to see my PCP for the UTI (which I have, three times, as it hasn't gone away for 4 weeks now) and they just put me on a different antibiotic. I have to keep putting off my Remicade because I have an infection, and all the antibiotics and not getting my Remicade are putting my Crohn's into a nasty flare. My PCP thinks I might have a fistula as well. So, I'm just the host to many health issues it seems!

Anyway, it feels good to get my story out because I don't know anyone who has anything similar to Crohn's disease. No one in my family has it, so it's hard for them to really understand. It's helpful to read about other people's stories and experiences.
05-20-2014, 12:37 PM   #2
Senior Member
7vNH's Avatar
Join Date: Apr 2014
Location: Charlotte, North Carolina
Wow, I'm glad you quit the doc that put you on 7 meds at once. Must be working on winning that trip to Bora Bora offered by the pharmacudical company. I'm sorry to hear they haven't found anything that really works for you. Going to get a full workup from square-one at a world-class outfit might indeed be a good idea.
05-20-2014, 01:09 PM   #3
Join Date: May 2014
Location: Cary, North Carolina
I'm sorry, I am only 29 years old. We are too young for this crap! I first learned I had Crohn's when I developed internal bleeding from an ulster. They first diagnosed me with IBS but honestly they really didn't know why I was having problems. They put me on different meds and made me try different diets, one of which was a high fiber diet. I had my first flare up while I had my bleeding ulster and that put me in the ER. I lost 20 pounds in just 2 months (I only weighed 160, so dropping to 140 as a 6 ft' tall guy is huge)

Its so hard when people don't understand what we go through with this disease, how it eats at our willpower and emotional stability all the time. And to top it off, we are so young! We will have to deal with this for the rest of our lives. I hear it does get easier and there are always support groups like these to help out. You are not alone!


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