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Crohn's Disease Forum » Your Story » My 22 years with Crohn's Disease


07-08-2017, 08:18 AM   #1
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My 22 years with Crohn's Disease

I was diagnosed with Crohn's in the 3rd grade. I was in a great deal of pain, lost a great deal of weight and became very pale. After a colonoscopy, I was diagnosed with Crohn's. I was 9 years old. I am now 31 years old and have had this for 22 years. My experience with Crohn's has been a roller coaster, with MANY ups and MANY downs. I have been on medication since being diagnosed and still take them today.

When I was 15 I had to have two surgeries. One to remove the blockage I had and a temporary colostomy bag. That was truly an experience being 15 years old. None of my friends understood, however, my teachers did. Two months later, I had the surgery reversed and no longer needed the colostomy bag. During that time I also had a port in which I had to receive medication by iv daily; in addition to oral medications. Due to this disease I was very late going through puberty. I was 16 when I started. When I got my drivers license at 15, I was pulled over all the time because I looked like a 12 year old who stole my parent's car. After my two surgeries in 2001 at 15, I had four years of remission. NO PAIN. Became a part of the popular crowd and was extremely happy. I started college and was growing into a great young man.

Then, my sophomore year, at 19, I started having problems again. I got another blockage. I again, just as I did when I was 14, was placed back on Remicade and narcotic pain medicines. It was a hard year. I had problems from May-December of 2005, that is when I was given the Remicade medications. The pain medicine helped symptoms, but I had a hard quality of life. At the end of the semester in December I had to have another bowel resection surgery. When prepping for surgery, I would not enter the room until I had internet access to check my grades for the semester. I was able to check online and found out I again my the presidents list. Yes, I made the presidents list after missing many classes, 15 trips to the hospital in a six month period and tremendous pain. School was always a top priority, no matter my illness. Knowing that, gave me comfort as I went into surgery.

After having surgery in December 2005, I returned to school in January and stayed in remission until 2014. I still took medications orally everyday during those years. In 2014 I was in the hospital seven times due to abdominal pain, diarrhea with excessive blood, throwing up, fatigue, weight loss and depression. I was finally given Humira to add to my list of medications. IT SAVED MY LIFE.

Here I am in 2017 and I take Imuran, Pentasa and Humira to control my Crohn's. I take Humira weekly. I have (knock on wood) have been in remission for three years. I had a colonoscopy as a regular check up in June which showed no activity of Crohns. I am very thankful that my gastro is very aggressive in treating my Crohn's even when I am in remission.

My advise to anyone with this horrible disease is to never lose hope. I have Crohn's Disease, but I do not let if define me. I am a school teacher, engaged and am buying a home. I volunteer with my local Crohn's organization, am honest with my employer, friends and family about my disease. Yes, it is not a sexy disease and can be uncomfortable to talk about, but I am very honest about it. I know I will have this disease for the rest of my life, and will do anything and everything possible to stay in remission and have a great quality of life.

I am happy to answer questions, and even hear tips from you about how you manage symptoms to have a quality of life.
07-08-2017, 11:04 AM   #2
ronroush7
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Hi. I am glad you are doing well and wish you continued success.
07-08-2017, 01:11 PM   #3
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Join Date: Jul 2017
Thank you very much for the well wishes.
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