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Jason’s UC Story – They Thought I Had Celiac Disease

jason colitis

Jason still smiling!

Hey everyone my names Jason, I am now 20 years old.

I was diagnosed with ulcerative colitis when I was 14 years old.

It was my freshman year in high school and I was playing football that fall. It was all going great till about mid October or so. I started waking up 10+ times a night to go to the bathroom and I was noticing blood, diarrhea, and stuff like that. At first I thought it was just a flu or something so I let it go for a few days. Then my mother started to notice how many times I had went and got nervous and stuff. So we went to the local doctor that told us that it was something not to be very worried about it will go away… well it didn’t, so we went to the bigger town 45 miles away and they said I needed an endoscopy not a colonoscopy at the time. So we did that and he determined that I had Celiac Disease. So I ate gluten free meals for like a year or so and went back saying we weren’t seeing any results. So then he did the colonoscopy and found I had ulcerative colitis.  Not celiac.

So then I started my journey on all these different drugs to see if i could stop the flare ups. We then decided to go to the specialist about 2 years ago or so and they said I should start remicade immediately, after the colonoscopy so I then started that for about 6 months no results…

So we said, we are done with this and went to the Mayo Clinic in Rochester, MN.

They did everything in 3 days (colonoscopy, endoscopy, and a bunch of other blood tests ect.) They were great there, this was about Feb. 2011. 6 or so years later… its been a up and down 6 years. They then told me there is two options: surgery or a diffrent medication. Well I don’t want surgery at 20 years old.  So I am still on Azathioprine and Lialda as of now to see if these help but I don’t know if they are…

I go in for blood work every 3 months to make shure my liver and stuff is functioning right. UC has changed my life drastically, at age 14 I was all about sports but then i got very sick went from being 150 pounds down to 120 or less, looked like a ghost.

I was extreamly embarrassed.

Going to school having to time my whole day around where the bathroom is, can I make it? I’m not embarrassed to say it anymore but I haven’t made it multiple times.. I always carry extra clothing just in case. But my whole High school career 9th-12th grade I didnt play any of the sports I wanted to (football and wrestling) in fear that i would have a bowel movement in front of everyone. it was really hard on me. But hey there are worse things right? Hanging out with friends was the hardest thing. Having to go to the bathroom at the worst time.. most of my friends would understand that i have to but it still hard on me. I love to snowmobile, and to be honest it seems like its the biggest stress reliever for me. When I ride my sled I seem not to have to go to the bathroom as much I usually can make it to my destination before stopping. I hate going on big trips because I have to know where the next town is everytime.. Do i go before or don’t I. UC made me change my whole plans up.   I wanted to go to college with my buddies but i can’t figure out what i can do that allows me to use the bathroom as many times as I do.  I hopefully am thinking about going to the local tech for power sports technology to work on small engines. I am currently still living at home because it will be cheap if I go to college here. I have changed alot in that 6 years.  I still go to the bathroom quite a few times a day, but I will live with that.

Well I think that’s about all I have to say. Thanks Alot.

Jason

 

Submitted in the Colitis Venting Area




celiac

17 Responses to Jason’s UC Story – They Thought I Had Celiac Disease

  1. Adam
    Adam November 21, 2011 at 6:39 pm #

    Hey Jason,

    you’re going to rock no matter what you end up doing! You got the coolest positive attitude, and sometimes that’s all you need in life.

    Thanks so much for sharing your story! how about some pictures of you tearing it up on the snow mobile!!

    -Adam

    • Jason3
      Jason November 21, 2011 at 10:17 pm #

      thanks adam, im not gonna lie i was very nervous to tell my story just because i dont like to talk about what i have… but after i did and i see theres more then just ‘me’ with it it made me feel GREAT about myself. i have such a positive attitude because there are people that suffer with way worse things and i have one life to live so im gonna live it to the fullest extent! one thing that does irrate me though is when people with no real problems complain how bad there life is and stuff. im like dude.. or chick. ‘how about you live one day in the life of someone with UC, you will SH#T yourself’ sorry for the bad language but hey its true.. thanks again adam and trust me i will keep everyone posted and if anyone needs any kind of advice just comment!

  2. Blu November 21, 2011 at 7:07 pm #

    Jason,

    I’m really inspired by your story! I’m 40, have been dealing with this disease for 10 years, and I tend to hide out at home way too much. If you can have such a positive attitude dealing with all the disgusting things we have to deal with having this disease, then I can have a more positive attitude, as well. Thank you!

    • Jason3
      Jason November 21, 2011 at 9:55 pm #

      thanks blu some days i dont go out just because i dont feel the best but i try my darn hardest when my buds want to i just think about how much fun im gonna have! and yes i do know where every bathroom is haha

      • Blu November 23, 2011 at 6:42 pm #

        We need an I-phone app that will direct us to the closest bathroom! I feel like I’m obsessed with them. I’m a huge Coen Brothers movie fan, so whenever I’m scouting out bathrooms, I always think of a line that Hi (who is obsessed with robbing convenience stores)says in the movie “Raising Arizona”, “I even found myself driving by convenience stores that were not on the way home.” I seem to know where public bathrooms are located even in places I never have to drive past.

        I need to get more brave and willing to do more things during flares. I’ve resisted the whole gearing up in Depends and having all sorts of extra clothes in the car so far, because I’ve always said I have too much pride. It seems to me it shows a better kind of pride in yourself to be be prepared for the worst and yet hoping for the best and getting out there and living your life. So, thanks again!

  3. Blake November 21, 2011 at 7:33 pm #

    Hey Jason,
    My story is very similar. I found out I had UC and then tested positive for Celiacs and was so happy cause I just figured eating gluten free would be the cure. I wish it was that easy. I have now been in a never ending flare, have tried Sulfasizine, Asacol, Asacol HD, Prednisone (tons of it), the SCD diet, enemas, just had my first infusion of Remicade the other week and nothings working. It looks like a murder sceen every time I take a crap. I realize that I need to give Remicade another try and hope it does something this time around, but I’m also trying to get myself comfortable with the idea of getting my colon removed. It doesn’t sound so bad after hearing some of the stories from this website (thanks again Adam). It actually sounds pretty wonderful right now, but would much rather keep my colon as most of us would. I’m glad you mentioned that you went to Mayo cause my parents are really trying to convince me to go there, but I’ve already done everything possible and I know Mayo’s answer would be surgery. If I could get down to 5 or 6 BMs a day, I think that would be pretty fantastic, but this 15 to 25 range I’ve been stuck in for months has been torture. Anyway, hope you’re able to figure out what you want to do and you get some relief bro.

    Blake

    • Jason3
      Jason November 21, 2011 at 10:01 pm #

      black i was rocking the same boat as you man every drug possible… remicade too and that didnt help i mean i still have way to many bowel movements but its just routine for me now. if i know that im gonna be a few mins away from the bathroom i try to go before. but i do always have toiet paper and extra clothes in my car just because there might be some prick taking a pee in the stall taking his time hahaha but hey man u gotta get out, people suffer with alot worse things then what we got! also have you tried immodium or pepto bismol? sometimes that helps me for a couple hours! might give you some time to do stuff! ya i know its nasty but try it bro. thanks for the comment, Jason

  4. Michelle November 21, 2011 at 7:41 pm #

    Hey Jason! Your outlook at your age is incredible! Keep it up! I started symptoms at 23..diagnosed at 28. It took years for me to learn how to deal with episodes and I still don’t get it right all the time. While seeing a therapist, one of the things she made me do was start wearing Depends. I HATED IT…WHAT GROWN PERSON WEARS DIAPERS??? …but it was a small blessing that help me calm down and get out the house more. Although I may not make the restroom, the depends keeps me from messing up my clothes (pants) and I have a moment to get the things I need and find a place to clean up. I used to not go anywhere and this definitely helped. Everyone is different but I have learned to control my episodes through diet, manage stress, positive attitude, Acidophilus, and no medication (it all makes me gain weight) You are young enough to have time to figure out your career…something that you love and can control the type of stress free environment to work in. We have to work and now I work for myself instead of someone else who is stressful and doesn’t care about you… The Stress was a huge trigger for me…..Take Care..hope something I live and breathe helps

    • Jason3
      Jason November 21, 2011 at 10:05 pm #

      Thanks michelle! you see i always know where restrooms are just incase! if i go somewhere i just use it so i know traveling somewhere else i shouldnt have to go. but like i said if messed myself more times then i want to name but i always have back up pants undies ect. i just have to deal with it. and i will find a good career soon, im a great worker, so it shouldnt be too hard. thanks again

  5. Cassandra
    Cassandra November 21, 2011 at 8:28 pm #

    Hey Jason :)
    It sounds like you’ve been through a big rough patch before… I was diagnosed when I turned 16, and I’m now nearly 19 years old. I was absolutely terrified of surgery to begin with, and I NEVER wanted to consider it. But, with all the tries with other medications and being on prednisone for over two and a half years…. Let’s just say that I kind of gave up. I had my colon removed three weeks ago and I’ve never felt better! It may not be the answer for everyone, but I’m certainly glad that I made the decision. I hope that you find the right medications/surgery for you.

    • Jason3
      Jason November 21, 2011 at 10:07 pm #

      thanks cassandra and yes my symptoms just plain suck but hey i have dealed with it for over 6 years and well im just plain use to it. so ill just take what i am and maybe i will one day get my colon removed who knows. thanks for your input.

  6. Rebeka
    Rebeka November 21, 2011 at 8:42 pm #

    Hi Jason,
    Great post, awesome attitude! Hope you find your combination of things to ease your symptoms. I don’t know if I’m as sick as you, but Lialda seems to be helping me. It’s also great how riding the snowmobile relaxes you. You should recall that feeling you have when you’re riding it when you feel really bad, it might help put your mind and body in that same relaxed state. These kind of things work for me anyway.
    Good luck!

    • Jason3
      Jason November 21, 2011 at 10:09 pm #

      yes riding snowmobiles helps me alot! i mean its not gonna stop me from going to the bathroom but it seems like i just dont have to as often when im riding. i wish it worked like that when i get that “urge” where its do or die time haha but it doesnt lol thanks for your support!

  7. Blake November 22, 2011 at 4:47 pm #

    Hey Jason,
    Yeah, I’ve tried Immodium, it does help a little, but still unpredictable. My doctor called me today and is urging me to get surgery now. She wanted to admitt me to the hospital today. Of course I said no, I don’t want to spend Thanksgiving in the hospital. I’m gonna give Remicade another shot, I’ve only had one infusion, which hasn’t done anything, my doctor is convinced it won’t work already which is weird cause last week she told me it could take 2 or 3 infusions to work. Unfortunately, I need to get back to work and take care of the family ASAP so I may have to get this colon removed even though I don’t want to. My shit schedule is not condusive to holding a job so I gotta do what I gotta do. Although it has been nice staying home from work the last couple weeks playing video games, haha.

    Blake

    • Jason3
      Jason November 22, 2011 at 9:11 pm #

      my doctor said surgery would be the alternitve but hey its my body right? you see i did multiple remicade infusions and they didnt work… just costly.. thats why i went to the mayo. and ya its hard to work with this i know but i work around it. And yes video games are what i do alot too haha MW3 is what i rolling with now.

  8. anonymous November 22, 2011 at 7:37 pm #

    jason
    keep up the fight and the great attitude. i totally understand not wanting to throw in the towel on your colon. i’m 50, and 7 years after my diagnosis and disappointing results with all the meds, i still resist the idea of surgery (though i understand the increased cancer risk and recognize that i may need to get cut one of these days). radical dietary change and stress reduction (as well as the love and support of my honey) have been critical for getting my UC under control. while i have not adopted the SCD, it is very close to the diet that works for me.
    one of my naturopathic docs explained that our bodies are like chemistry sets and those of us with UC need to find the right mix of foods that works for us. since all of us have different metabolisms and body chemistries, there is no “one size fits all” approach, which the SCD recognizes as well. i have found that i constantly experiment to figure out which foods i can tolerate. but, as a general matter, a diet of heavy in sugary/starchy foods, and drinking alcohol even in small amounts, seem to trigger flare ups.
    in terms of physical activities and travel, i completely sympathize with your struggles. when i flare, i feel like it’s all i can do just to get through the day. i have no excess energy to invest in exercise, so i just curl up and get as much rest as i can. (this actually helps the healing process, so i accept the limitation.) for me, if my UC is active, mornings are the hardest. after multiple BMs, i feel “cleared out” and, assuming i don’t eat something stupid or drink something even more stupid (like coffee), i feel like things are “under control enough” in the afternoon so that i can work out, take a walk or go on a bike ride. sometimes, if i know i will be away from a convenient toilet for a few hours, i will ingest some medical cannabis to slow down my digestive track. i have found that medical cannabis works wonders in controlling intestinal spasms/cramping and generally calming my gut and that i can go hours without running to the crapper after ingesting some herb.
    hope you find remission soon.
    g

  9. Peter NZ November 23, 2011 at 1:21 am #

    Just do it dude.
    Adversity just makes the feeling of reaching the top of the mountain feel better.
    Blind, deaf, wheelchair, colitis whatever. The worst thing is to think I have something wrong with my guts that is less than ideal and maybe this might happen (or might not) so I won’t do what I want to do just in case.
    Go for it,
    Enjoy your life. It is your only one,
    Peter

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