Dark 1.5 years, But Quieting is for Losers

Me doing some ice racing

Me doing some ice racing

Introduction:

I’m 23, my name is Jayson I was diagnosed with Ulcerative Colitis when i was 20. It has been the hardest thing i have ever dealt with.

Some more about me:

I ice race and drag race.

My Colitis Story:

My first couple years of UC were pretty mild. But the last 1.5years have been miserable. It got extremely bad i was in the bathroom 30 times a day, sleeping only 2hrs at a time before a bathroom trip. in constant extreme stomach pain, worse of witch was having a bowl movement. couple times i managed to pass out on the toilet from the pain and woke up on the floor. i became anemic from the blood loss. was hospitalized more then once for dehydration. lost 30lbs putting me at 134lbs the lightest i have ever been since 9th grade. i couldn’t eat or drink with out instant pain. then the hip and neck pain… my right hip became so inflamed i literally could not walk with out a walker or crutches. yea, at 23 i was using a walker. this really killed my spirit. my life went dark i pushed away everyone in it. I had no energy i just wanted to sleep. but i tried i never gave up. I’m a tool builder at a machine shop and people counted on me to be there. i missed work only when i couldn’t walk. i also ice race dirt bikes, have been for 13 years and it was the only thing keeping me going. at my worst i was still in the shed wrenching, trying to convince myself i could still make the up coming season even though my hip was so bad I couldn’t start my own bike or stand at a track all day in full gear with only a few bathrooms in sight. i missed the first race. My UC was at its worst, it was the day before the race i was still trying to get ready, i was getting parts and had an accident in line at the UPS store. at that moment i realized i wouldn’t be able to race, my passion was taken from me. It was one of the saddest days I’ve faced in my young life.

Jayson 500

In all this time my i was in between doctors, my family doc was helping as much as possible. they had me on every drug known to UC. my doc at MAYO clinic was trying to get me to do surgery but i wanted a second opinion. At one point they put me on Remicade, which of course killed my immune system, within three days i got double pink eye, and ear infection, and the flu..on-top of my horrible UC symptoms and seasonal allergies….i wanted to die.

My fam doc put me on prednisone witch has always worked for me and i got to race the season.
i finally got a GI doc in my area, he has me on 40mg of pred and pentasa… witch has finally got me in full remission for 2 weeks now. But i don’t have my hopes up… I fear once I’m off the pred next month it will all come back just like it does every time.

UC has made my life miserable, I’m not going to sugar coat it. for 1.5years i wanted to die. no one in my life understood the misery i was in nor did i expect them to. but non the less it made it hard. ive been feeling good for 2 weeks now. its crazy though i still haven’t fully snapped back. i still feel changed to my home and the toilet in it. guess its just a mental thing i have to get past. idk im still scared.

But it’s so nice feeling better this past 2 weeks. i wake up everyday feeling happy and existed, I’m seriously sitting here in tears because I’m so relieved. I just hope the worst is behind me.

And I’m sorry this story was so negative i just needed to vent its been a dark year and a half for me.

written by Jayson

submitted in the colitis venting area




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9 Responses to Dark 1.5 years, But Quieting is for Losers

  1. Joanna May 10, 2013 at 6:55 am #

    Hey jayson. I have to agree with you. Uc is he worst and most painful disease that has ever happened to me. I too was using my grandmas extra walker due to prednisone usage because i couldnt walk on my own. I had zero strength. My mom was bathing me at 21-23 years old when i was unable to do it myself. I hope you can get back to your sport someday without having to worry about his crappy disease. My goal is to be able to run in the park again. I never take good days for granted either. I always do something that makes the day just a little more memorable.

  2. Adrian May 10, 2013 at 8:57 am #

    Your story sounds so very familiar, the constant pain and weakness drain ever fiber of existence out of you! My doctor put me on a steroid enema after I ended up in hospital. Was down to 128 lbs, the nurses had to basically hold me on scale because I was so weak. It took 16 months at $11 per day of violating my own ass to get better. During those 16 months my life and business fell apart bringing on depresion. It was the uncertainty of servival that influenced the decisions I had made, the memories of pushing through the pain to get things done so that now I am not willing to sacrifice good health for money anymore! some people see it as a weakness to not push through the pain, those people are no longer my friends.
    After those 16 months of enemas life was great! I went on a 4.5 month back packing trip to Australia and New Zealand passing through Singapore Korea and Japan. Met some great people, listened to heaps of stories about lifes challenges. That trip taught me so much about life and of myself, I went alone, only contacted family once a week, I was 30 and my friends couldn’t understand why UC had destroyed my life.
    Over the past 6 years since UC has come back, have ended up in hospital on prednisone, the biggest lesson is to eat proper and when your in a flare, REST! Your body will do its thing and repair if you give it a chance. Pushing throught the pain only creates more pain!
    When life is good and UC is a memory you will appreciate and understand life far better than the general public! I volunteer on boards of directors and have had meetings with ministers of parliament (we spent more time talking about international trade than talking about our national organization that I was representing) All thing that I would never have had the self confidence to do before UC.
    Your life may have changed because of UC, just remember life changes with time anyway so make it a good change! Fight when you can rest when you must.

  3. Cindy May 10, 2013 at 2:30 pm #

    Thank you for sharing your story Jayson. Know that you are not alone and that other UCers understand. I was diagnosed in June 2012, I am starting to see the light again. I am finding that diet is a huge factor….(Adrian mentioned eating proper) then I also found that there is no ONE formula for everyone it’s a series of trials and errors…..in finding what works. Right now I am feeling the best I have in 2 years…..(feeling almost paranoid to say it) Better days ahead for you Jayson.
    If you have questions about which foods…..or any other questions, I am happy to help if I can.

  4. bev May 10, 2013 at 4:48 pm #

    Wow, man, been there, done that. You put into words perfectly how it feels to have UC.

    Have you ever tried probiotics and L-glutamine? I was on UC meds for 14 straight years, and now I’m not on ANY meds, nor will I ever take them again. I am in remission for the first time in 14 years because of a good probiotic (Ultimate Flora Critical Care by RenewLife) and fermented L-glutamine powder…which actually HEALS the colon. No meds can do that. They just either kill your immune system and make you feel like crap OR they don’t work at all, at least not for long.

    Think about doing it natural. Some people on here (like Graham in the UK) swear by extra virgin olive oil one teaspoon three times per day…or is it a tablespoon Graham? Thing is, you really gotta find out what works for you NATUYRALLY (we are all different in our UC, unfortunately, and what works for me may not work for you), cause all you’ll get from the drugs are awful side effects, and eventually, the loss of your colon.

    Cheers,
    Bev
    :)

  5. bev May 10, 2013 at 4:49 pm #

    Sorry… I meant NATURALLY…typing too fast again
    :)

  6. Skip
    Skip May 10, 2013 at 9:04 pm #

    Jayson , ice racine is so cool ,I’ve watched it up here in New Hampshire on the lake I feel your passion. Your not alone with your UC,and this is a great site to vent ,we all understand what your going through ,even if we have different experiences with it. I’ve tried the evoo doesn’t seem to work for me ,I still need to try what Bev suggested though I do take a probiotic everyday .i started on 60mg of prednisone and within a day I was getting relief . I weened down to 5mg and all my symptoms came back big time ,endless trips to the br
    blood ,pain . Dr. put me back up to 40 mg of prednisone and again within a day I was feeling normal again . Bad thing about it was all the
    Side effects I get . Right now I’m in Taiwan visiting family so I’m limited on what I can do , but I’m hoping I can get med. free like Adam,,Bev and anyone else who has luck in doing this. Keep on keeping on ,don’t give up ,and keep on racing !

  7. Jen From UK
    Jen May 11, 2013 at 12:48 pm #

    I’m definitely feeling where you’ve been! I’m in a dark place right now so it’s very good to hear you’re having 2 good weeks :-) best wishes to you and racing sounds great

  8. Jayson
    jayson May 11, 2013 at 2:52 pm #

    Thank you everyone so much for your comments and storys! The season went great I finaly beat a guy I’ve been chasing for 5 years but he still got me overall in points and I took 2nd… but next year when I’m healthy enough to actualy hang on to the bike he is goin down every race! Haha but health still amazin still on pred till next week. Fingures crossed the pantasa can keep me in good shape after the pred runs out. But life is amazing right now, I couldn’t have a bigger smile on. So much motivation it blows my mind. It felt like I was just becoming a lazy person. But now that my health is back I’ve been burnin my tires at 100mph non stop just like the days b4 UC! My amazing parents just spent all day helping me lay new flooring and the best part…I worked 9hrs with ZERO bathroom brakes! Thanks again friends for all your saport! I wish you all the best with your health and I hope many years or remition for all!!!!! Never give up!!!!

  9. Colleen May 12, 2013 at 4:02 am #

    There are a lot of us that have been there too so you really are not alone. I have been on Revellex for 2 years now (I think it’s your Remicade) and it’s the first thing that worked for me. Been in at least 95% remission for the 2 years and my last c-scope result was even better than that but I don’t think you ever really lose the fear of a relapse. Just try and enjoy your life now while it is good. Bad times come for everyone in some shape or form. If this illness teaches you anything it’s to appreciate being healthy…and that old age is not for me! :) Good luck with the racing! :)

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