What is your Crohn's disease story? Let's share!

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Patients Crohn's disease

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Posted on

Hello everyone,

How are you today? emoticon cute

I thought I would open this discussion so that we can get to know one another better!

So, what is your Crohn's disease story? When and how were you diagnosed? Did you receive your diagnosis relatively quickly, or did you have to see multiple doctors? What treatments have you tried for it? How are you doing today?
@SabinaYetta52@subtlerose@Tracyfillad38@Jeffrey@madisonj688@Callie22@Geo2077@rythm4hall@Samifrogg@uhhhian@Kfor1992@emmahayes6@Shikamaru11@Jadaneal00@fitstart74@Julesbird58@lisa_searle@JasonMcCabe730‍ 

Take care,
Courtney

Beginning of the discussion - 7/21/20

What is your Crohn's disease story? Let's share!

Posted on

@Courtney_J Hi, I was diagnosed with Crohn's about two years ago now after being misdiagnosed with IBS for several years. I'm currently on Imuran which is working pretty well, but I still have some bad flares from time to time. Not sure if I can help anyone since I'm still relatively new to Crohn's, but if anyone wants to talk or has questions I'm here! :)

What is your Crohn's disease story? Let's share!

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@Courtney_J @keeppushingon I was diagnosed as a teen. I'd been having a lot of stomach pain and fatigue and a few almost "accidents" kept me running to the bathroom all the time. My sophomore year of high school I missed a lot of school and my grades really suffered because I was too tired to really pay attention. It was horrible. I tried a few different diets but nothing really worked so I went to my doctor who directed me to a gastroenterologist. After an endoscopy and colonoscopy we were sure it was Crohn's. I've been through a few meds but now I'm on Stelara. I still have flares occasionally but overall it's better. It's definitely taken a toll on my mental health, I deal with quite a lot of anxiety and some depression. 

What is your Crohn's disease story? Let's share!

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In 2009, I started experiencing cramping and diarrhea. I went to my family doctor and he told me it was IBS and prescribed me Lomotil, and it helped with the symptoms, but it didn't solve the problem. 

In 2010, the symptoms got worse and he sent me for a CT scan and by the time I went,  I was so sick, I had a temperature of 104°and they found ulcerations in my large and small intestines.  The hospital techs informed my doctor and recommended that I be admitted, but he refused and sent me home and referred me to a GI specialist the next day. Luckily, he admitted me and ran more tests and confirmed it was Crohns. At the time I was diagnosed, my GI doctor never fully explained what exactly what Crohns was, so most of what I learned was online sites like Mayo clinic or Web MD or online support groups. 

He started me on Prednisone for 6 months, Imuran, Vemlide (because I have Hepatitis  B) it keeps me from going into liver failure because of the biological, and Humaria, which I only tolerated for 2 years.

  My Rheumatologist also had me on different medications for my Osteoarthritis and as a last resort, she put me on Remicade Infusions and since it's also used for Crohns, my GI doctor kept me on it. Surprisingly, with all the intestinal problems,  I never lost weight,  I always was overweight, until 2017, I started having problems with my stomach when I'd eat, I'd get severe stomach pains. I called my GI doctor  3 times and he refused to see me and it got to the point that I couldn't eat hardly anything at all and I ended up losing 60 pounds. I left his practice and my Rheumatologist referred me to a new doctor and he's wonderful!! 

I learn new things everyday about this disease and am always looking for answers. I have other medical issues other than my Crohns and don't know if the symptoms that I have are all intertwined.

What is your Crohn's disease story? Let's share!

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in my 20s I had a lot of GI issues and was told I had IBS. I was told to live with it. I finally had enough when I had over 10 bathroom runs in 3 hours. I told my doctor to give me a referral to a GI. After about 5 years I finally got my Crohns diagnosis. After trying different meds, I’ve been on Humira weekly for about a year. I still have flares but not as often before.