Saturday , 25 March 2023
Jay’s Story

Jay’s Story

Who is this guy Jay?  And why is he writing this website?

At age 15 I was diagnosed with Ulcerative Colitis.  When you’re trying to be cool, go to school, go out on dates, and to just be a kid; having ulcerative colitis can be a real pain in the butt.  It really sucks!  Especially when you’re young and you feel alone, or weird, it’s a tough condition to have.  I’m hoping this blog may give someone with a digestive disease, especially colitis (since it’s my specialty) an outlet for advice, support, and to talk about an option called BCIR (Barnett Continent Intestinal Reservoir) that might give you your life back.  I don’t work for the hospital nor am I a doctor, I really just want to give people who feel helpless with their condition a friendly ear… something I wish I had when going through my days of colitis.  I hope that I can answer some non-doctor questions about colitis, and my experiences with BCIR.

I should make the disclaimer that I am not a doctor and have no medical ‘training.’  Anything written on this website should be verified with your doctor.  My experiences are my own and others may have different reactions.  My words should be taken as support or an additional perspective in any action you may consider taking.  Anyway, sorry for that boring part!

So growing up with colitis was a phase of my life I’m trying to forget.  I lived with the 15 trips to the bathroom and the severe cramping pain, only to poop out some blood.  I couldn’t gain weight.  I only really felt relaxed on the weekends when I could be 10 steps from a bathroom.  If I had a date planned for Friday night, I stopped eating Thursday morning so I wouldn’t have any accidents.  No matter what I ate, or how much, I would get this extreme pain every half hour of my life unless I ran to the bathroom.  I hadn’t slept a full 2 hours for 8 years as the colitis would get me up many times a night.  I was anemic, skinny, and just unhappy with how the colitis dictated my life.  I went through the gamete of treatments for colitis; prednisone, azolfadine (sp), all kinds of stupid drugs.  None of them cure you, and none of them really helped at all!  I tried holistic eating, acupuncture, I tried it all! However, I will say that if I could go back, I would have liked to give the holistic approach another try. As a 16 year old kid it’s difficult to eat only yams and aloe vera juice with the hopes that it might heal me in 10 years. I just wished I had given it more time to potentially heal me.

This is getting long and boring, so I’m going to speed it up….  At age 21, I was presented with this BCIR (Barnett Continent Intestinal Reservoir) treatment.  After having colitis for 7 years, I was open to the option.  The whole external bag was not for me, but the BCIR being completely internal made me very interested.  As the years go on living with colitis, your chances of colon cancer spike upward as well, so this also helped in my decision.  After contemplating the BCIR surgery, and making sure I had the health insurance to cover it, I ended up having it done a year later.

Today I am on top of the world!  I seriously feel awesome. I do what I want, eat what I want, and just feel healthy!  I am very happy that I went through with the surgery.  Yeah I poop out of tube now, have this weird hole on my abdomen (below the waist), and a burly scar down my belly, but life is great!  Believe me, there are still some cons about it, and after surgery I had some medium complications, but when compared to my colitis, my quality of life has increased to the max.  After maybe a year, I forgot that I poop differently than everybody else as it really does become second nature.  I live a very normal and happy life.  Sleep 8 hours, no bloody stools, no horrific cramps; I POOP ON MY OWN TERMS!

I am truly a BCIR advocate.

– Jay

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