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The Sudden Change of a Lifestyle

Alex 18 year colitis in SwedenIntroduction:

My name is Alex and I’m 18 years old. I live in Sweden. I was diagnosed UC in April 2008.
I’ve read some of the stories on this site, and now I want to share a quick story of my life.

I’ve never spoken to anyone with UC except a friend to my dad, so please be nice. ;-)

Some more about me:

Negative history:

I’m probably the most unlucky person in this city.
Bone-fractures, atopic skin, borrelia, scars from stitches on my chin, my lips, my arms and on my knees.

Positive history:

I have always been a sports guy. I’ve trained both floorball and soccer at the same time for about 6years.
I’ve got really supportive friends, the best family you can find.
Easy to make new friends and build relations with older people.
I’m a bright kid, school has never been difficult for me.

Symptoms:

At this very moment I feel quite good, I have some wandering aches and abdominal cramps. But that’s it. Some people feel sorry for me, I feel great. Knowing that it could be ALOT worse!

The Sudden Change of a Lifestyle

How it all started:

February 2008
I was starting to feel abdominal aches and my stomach was acting weird.
It started with 5 stools each day, I thought that I had ate something bad.
But as the weeks passed I was getting worse.
But I was too embarrassed to speak about it. (Who talks about the bathroom visits!?)
I was running to the bathroom about 20times a day! At the end my mom noticed it. And insisted on seeing a doctor.

The sentence:

So we did. And there we had it, I was diagnosed with UC. He told me that it was incurable.
That sentence, is a sentence I will never forget!
As a 13year old, many emotions flew by. I played all possible scenarios in my head over and over again. Asking myself: “Will I ever get back to normal?”
He prescribed me prednisolone and azathioprine. I started feeling better, but my face got swollen from the prednisolone.
I was so embarrassed of my looks. Everyone was asking me about my face and my fat belly.

A changed lifestyle:

As I was getting worse, I had to quit soccer.
But I enjoyed playing floorball so much that I told myself. I will not give up this easy!
But in the end, I had to quit floorball also.. I lost contact with many of my teammates, which is sadly.
I wouldn’t leave the house unless I really had too!
I missed 3 months of school. I didn’t remember how it felt to have no symptoms.

At the end of 2012 I stopped responding to the medication. Starting to see some blood in the stools again. We were talking either starting with remicade or the surgery. I was thinking about going for the surgery, but I didn’t want a pouch on my belly during the summer.
So I chose Remicade. And 4 days after the first infusion I was feeling great! No blood, less bathroom visits, everything was feeling great!
I’m returning to a “normal life”.

My life now:

I’m studying to become a plumber. I have also picked up floorball again. Which feels awesome!

My friends mean everything, they stood by me every minute.
Without them, I’m not sure I would sit here in my bed and write this..

Medications:

I’m taking Asacol and imurel everyday and remicade every 8th week. My values is looking good and so am I! ;)

Remicade is by far the best thing that happened to me!

written by Alex

submitted in the colitis venting area




15 Responses to The Sudden Change of a Lifestyle

  1. Adam
    Adam July 11, 2013 at 4:04 am #

    Hey Alex,

    Thanks for sending in your story, and I hope your having a nice summertime with plenty of sunlight up there in Sweden!

    Also, super cool that you’ve figured out your UC and found a way to keep up with things like floorball!! Impressive amigo!

    I wish you well, and good luck with the plumbing! I might be calling you someday.

    -Adam

    • Joan H
      Hope July 12, 2013 at 8:08 pm #

      Hi Alex! Thank you for sharing your very honest, inspiring story about life with UC! You really are an inspiration, and I posted your story to my facebook because I have now come to know several people under the age of 18, just diagnosed and feeling hopeless – it’s going to be great for them to see you and hear from you! Thanks again – you’re an encouragement to all of us! All the best – Hope

    • Alex July 13, 2013 at 3:09 am #

      I wish the same to you! I’m really glad that you have created this website. I’m almost having some tears of joy right now, thanks to all the answers.
      Feels great to talk to someone who have felt the same.

      I wish the best for all of you guys! If I travel to north america, I will surely let you guys know! It would be great to talk to you in person! :)

  2. Angela July 11, 2013 at 8:40 am #

    Hi Alex,

    I’m glad to here remicade is working with you! Remicade has been my lifesaver and I’ve been on it for over 9 years now (weird to think that I’ve been on it for almost half my life!). After a year or so into your remicade (once your body is used to it) ask your doctor to start taking you slowly off your other meds. You might have to bump up the remicade frequency but considering you’d only be on one medications its completely worth it :). I’m at a 5 week interval with no side effects. Good luck!

    Angela

  3. sunnycape July 11, 2013 at 9:09 am #

    Hi Adam

    I am so happy to hear Remicade is working well for you! I am on it as well – for about a year and a half and I also thank goodness for it! Good luck with everything. Enjoy life :-)

    PS: Angela, interesting to hear that about going off the other meds. I’m on methotrexate as well as remicade and would love to go off it… perhaps I’ll ask my doc! In the beginning I asked him and he said no. Is this the usual thing that is done or is your doctor just trying it out?

    xx

    • Angela July 11, 2013 at 10:26 am #

      Hi Sunnycape,

      It’s highly recommended now to not stay on methotrexate and remicade if you can manage it because the combination of both is what increases your risk for cancer (I was on both for the first 4 years like you). I was still with a pediatrician when we stopped methotrexate and the department made the decision to stop the combo with all their patients except in the cases where they weren’t responding without still being on both. If they could get you off that would be great! You’ll just feel way better without it! In the beginning you still need it because you need something to help you out as remicade takes some time to get going. I would ask again and see what he says. :) Hope you get off and feel free to ask about anything if you have more questions!

      Angela

  4. Don
    Don July 11, 2013 at 9:28 am #

    I have to say I had the opportunity to go on Remicade and even had the TB test but the list of possible side effects and cancer risk terrified me. I couldn’t do it. I am glad it is working for you. I hope for the best for you.
    Don

    • Alex July 13, 2013 at 2:58 am #

      I know exactly the feeling. I’m still a little bit terrified to be honest. But as long as I am improving, it’s worth it. But IF everything goes south for you, I strongly recommend Remicade. Because when the moment comes and it feels like nothing is working. Then what could possibly get worse? ;-)

  5. Princess PP July 11, 2013 at 2:28 pm #

    Good for you! I started Remicade while in the hospital. My doc started me on Imuran as well and after 4 months or so I finally started to get my life back. I will see my doc for check up on Friday and I will inquire about dropping the Imuran. Less is better eh? I’ve been in remission now for a year and I thank God. It was pretty bad there for a while. Good luck to you! I always found it hard to described to friends what I was going through without them freaking out. Really, no one wants to hear about losing your control at Starbucks …. but then again…. how could this be happening to me? It’s awful but you’re going to make it!

  6. Debbie July 12, 2013 at 5:35 am #

    Hi Alex, I am also very glad to hear that you are doing better. I remember getting my “sentence” when I was only 24yrs old. I just turned 50 this June and have learned so much about UC and how my body reacts to stress and food. In the early years, my doctor did not stress diet with me at all. It was only after aHORRIBLE flare up followed by C-DIF and a year of fitting to get “me” back that I really understood what role my diet played. ie: carbination from soda, fat from greasy goods, spicey food, caffeine. When I have had flare ups I watch myself very carefully and when I am feeling well, I can eat just about anything (although I don’t). I always want to feel “good”. Have you adjusted your diet at all? I have tried the Specific Carbohydrate Diet that I learned about on this website. I think it helps.

    Best of luck to you and all!

    Debbie

  7. Alex July 13, 2013 at 3:05 am #

    Wow Debbie, I am happy and inspired that you have fought and lived with your UC for such a long time. I have had some thoughts about never reaching the age of 40 when I’m feeling sick and depressed.
    I’ve thought about my diet, but I’ve never changed anything about it. I’ve only stopped drinking coffee. But I drink ALOT of coca cola, I love spicy barbeques and asian food.

    Thanks for the tips, I am gonna try that Cabonhydrate diet!

    I sure hope you stay healthy as a horse!

  8. k July 15, 2013 at 1:39 pm #

    Hi Alex,
    Here is another story about longevity which I send with the hope that it gives you some comfort. I have had an ileostomy for 38 years. (The j pouch hadn’t been created yet.) I was diagnosed with uc, after several years of symptoms, on a Wednesday and on that Saturday problems developed they had to take my colon out.

    I was somewhat older than you (32), was not very athletic, and through college and into a career that was no problem with the ileostomy. So, for me at least, it hasn’t been very hard to live with.

    What I hope for you is that medicines work well, and you soon have it under control. But if not, after you have suffered enough, think about surgery. It can be a quick cure.

  9. UC Family Boy
    UC family boy July 15, 2013 at 2:49 pm #

    Hey Alex,

    So cool isn’t it when friends are there for you, it helps with lowering stress and ultimately every little helps when it comes to UC and keeping it in remission.
    I didn’t know how to tell my friends at first but when I did it made it all so easy to be around them…Infact they know more than some of my family, it’s just the way it is.
    Sometimes it’s the little things, like when I went for a BBQ this weekend, called Emma saying il be 1hr and she casual in conversation said what she made for me (SCDiet). Being open helps, you appear to be which will only benefit you in the long run. I am glad to hear you are picking up some sports again.

    Anyway, having UC and being a plumber means you never have to worry about an out of service WC :-)

    • Alex July 22, 2013 at 7:01 am #

      Yeah friends are everything! Haha yeah! I’m gonna install 3 toilets atleast in my house, so I know that there is always one toilet that isn’t occupied!;)

  10. Alex in Sweden
    Alex July 22, 2013 at 6:11 pm #

    And yeah.. for those of you who don’t know what floorball is.

    It’s like icehockey, but you run instead of skate, and you have a ball and not a puck.

    Links: http://www.youtube.com/watch?v=6XUzhBxYV_Q & http://www.youtube.com/watch?v=1WPppate-TE

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