My UC Life Story Thus Far – Young Person with Colitis

Erin with her horse

Erin with her horse named Butter

My name is Erin, i was diagnosed at age 5 and am 18 now so that’s 13 years.
i like to ride horses. im a pharmacy student in my second year. I’m from USA. i have two sisters and live with one of them, a mother, and a step father. my favorite bands are green day and blink 182. feel free to contact me
facebook: Erin Thompson
email: day_love_green@yahoo.com

My Symptoms:

currently i have canker sours, bloating, gassyness (ugh!), somewhat mild belly pains (well in comparison to what it has been), looser stools (but again not to bad), nausea at site of food/after eating
you might say i’m in a pretty good spot, except that i’m coming out of remission after about 4 years -.- just what i need in my second year of college.

My Story:

So at age 5 I was diagnosed with Ulcerative Colitis. I don’t really remember much about it except that i was supposed to call my mom every time i went to the bathroom and that i had to take sulfasalazine every morning. In elementary school i tried telling my friends about it but they all thought i was weird, i mean what 7 year old talks about things like chronic illness with their friends right? I can’t really blame them, it was a rather odd situation for them but it still made me feel like an outcast. Luckily the meds were keeping me in remission so i didn’t really have to worry about it. i stayed in remission for a good 9 years, an exceptionally long amount of time to be in remission. Then i went in for a regular scope to see how i was doing, i was feeling fine but the results said i had a little bit of irritation. This made the doctor and my mother decided it was best to change meds to asacol, a very similar med to sulfasalazine. I’m not sure if it was because of the switch or the scope or if i was just coming out of remission but soon after that i started having symptoms again, although i did not recognize them because it had been so long since i had had them. When i did notice them i was embarrassed because it was a rather personal issue and i hadn’t had to deal with something like that before. Eemember this was sophomore year of high school and i was only 15 at this point.

So i went on and it kept getting worse, after a while it was so bad i was going like 20 times a day but i still managed to hide it because i didn’t even want my family to know. One night i couldn’t take it any more, my mom found me crying on the couch because i was in so much pain, i told her everything and ended up being driven to the hospital within the hour. They admitted me very soon after we got there. They said i had toxic mega colon which basically means I’m lucky it didn’t rupture. they put me on a lot of different meds and iv dripps. They tried a few but none of them worked. i couldn’t eat anything so they gave me a picc line (a long term iv that goes directly from your upper arm to your heart). i don’t remember most of the beginning because i was so heavily drugged, i do remember one of them made me hallucinate that a cat had jumped out of the TV and i was sad because i couldn’t pet it. Leave it to me to be worried about petting a kitty in that sort of pain lol. they had me on prenizone and some other temporary medicine that i don’t remember and after a couple days put me on 6-mp. This was working great, for about a day. the next day i had a seizure, all i remember from that was that i had been pretending to sleep because my mom was on the phone with my grandma crying and i wanted to give her privacy, i had a killer headache that day so i had an ice pack over my eyes. It felt like i had fallen asleep and woken up surrounded by nurses and doctors and who knows who else. i was shocked by the chaos because i didn’t know what happened and why they were there. My nurse explained it to me and i was rather calm about it, they took my vitals and notified the doctor and said just to monitor me and take me off that med. (note this was a very rare side effect, like one in a trillion it dosnt happen in most people and is unlikely to happen to you but it can). I dont remember after that but apparently as soon as they left i had another seizure and they all had to come back.

The next time i woke up i was in the ICU. They put me on an anti seizure medication and some heavy narcotics, i was very out of it for most of my time there. After i think two days i was able to go back to a regular room. i was not being monitored extremely closely and woke up every two hours for vitals. they put me on remicade now because we were running out of options. Luckily this seemed to help a lot. I progressed rapidly and was soon able to go home.

After my two weeks in the hospital all i wanted to do was go to school,

I was and am a nerd you see.

 I was really weak for the first few days because of all the bed rest, it was very difficult to even climb the three steps to get into my house. once my strength returned i was able to go to school, i was really excited to see everyone, they had all sent me cards and stuff while i was in the hospital. When i got there everyone treated me like i wasn’t normal any more, they didn’t know how to act around me. They didn’t understand i was still the same person. Only my friend Steven treated me the same as ever and could cheer me up no matter how bad the day was, to this day he is still my best friend because of that. But it made me really not be able to trust most people and made me get an entirely new, very small, set of friends, who i barely trusted and didn’t often talk to. it was rather depressing but then again i was rather depressed. It was so horrible i tried to end my life, i failed. Still Steven is the only one who knows about it, until now obviously.

But long story short i got better, all that time in the hospital made me want to pay it forward and help other sick people. That is why I’m in pharmacy school now. now, four years later, i am starting to experience symptoms again and am really scared because, well you see where i ended up last time. its even more scary now that im paying for school, i have a job, i have other responsibility’s. My doctor upped my dose of remicade but that doesn’t seem to be working.

Well thats my story thus far, Im glad i could get it out there
By the way if there are any other people out there who either are young with colitis or were diagnosed when they were young like i was, i would love to talk to you, i have never met another child UCer.
facebook Erin Thompson
email day_love_green@yahoo.com

Where I’d like to be in 1 year:

i would like to be once again in complete remission

Colitis medications:

i would just like to say that rare side effects are rare but not impossible, be cautious of them and use them as well to help decide the medication you take becouse you might be that .00001% who actually gets it, i was. but also dont fear medications because of them, just be educated.

written by Erin

submitted in the colitis venting area




nausea

18 Responses to My UC Life Story Thus Far – Young Person with Colitis

  1. Adam
    Adam September 11, 2012 at 9:43 pm #

    Hi Erin,

    I wish you lived right next door to me because even though you might not think i’m young….(is 33 young?) I think I’d be breaking down your door right now and giving you a super bear hug. I can’t begin to imagine all you’ve been through in the past 13 years.

    You are incredible, and no matter what UC does or doesn’t do to you moving forward, you are who you are, and to me, you’re unfrigginbelievably special. And I aint just saying that because you like Green Day and Blink. Oh hell no. I’m sure anybody who knows you well is happy they do.

    I wish you the very best with pharmacy school, and if I ever take a UC medication again, I’ll be praying that you’re the pharmacist behind the counter. (How friggin cool would that be right) And how cool is it going to be for you to meet young people who are coming in for their UC meds!! Super cool right?

    Best of luck to you, thank you so much for sharing. I created a new “category” on the site called “Young People” and your story is the first one in there(although I know there’s many others that I could go back and put in there too, so thank you for making that possible.) https://ihaveuc.com/category/personal-stories/young-people/

    what’s your favorite Green day song BTW?

    You rock Erin,

    -Adam Scheuer

    • Erin September 13, 2012 at 7:06 am #

      Ya, one think im kind of excited about is being able to mix my own medicines lol
      I’m glad you created a section for younger people with UC, I think its a great addition to your site and will help a lot of younger UCers in the future

      my favorite green day song is minority, i hope they play it when i go see them in January!

      • Adam
        Adam September 13, 2012 at 7:56 am #

        Love that song too!

  2. UC Family Boy
    Uc family boy September 12, 2012 at 12:22 pm #

    Erin,

    I met a nurse recently whos son was also diagnosed at 5. By 8 he had to have an operation. Now he is so happy (strangely same age as you now). Swimming, loves footy… He has like you know life only with UC.
    Your story is a remarkable journey that kept me reading all the way to the end with hope of a happy ending. But we all have a lot of living to do right, so a lot of happy times ahead :-)
    I will, if you don’t mind pass on your email addy to my nurses son. I think you both have a lot in common and could help with dealing with teenage stuff and UC

    UCFB

    • Erin September 13, 2012 at 7:02 am #

      I wouldn’t mind at all if you passed my e mail on, like i said i have never really known anyone my age with this so it would be nice to meet someone thank you =)

  3. Allison-3
    Allison September 12, 2012 at 12:33 pm #

    Erin-
    You are so brave! My kids (10 and 13) just read your story and said you are their hero!
    Hang in there and good luck in school… I just graduated with ny Biology degree (so glad I made it through Biochemistry). Haha!
    Allison

    • Erin September 13, 2012 at 7:07 am #

      Thanks!
      Im actually in biochem now, its pretty terrible lol

  4. shelly September 12, 2012 at 6:52 pm #

    Erin, My daughter was diagnosed at 3 and will have surgery soon at 6. It has been a long and difficult road no doubt and I have to say as a mom whose child is going through this it hurts to read how you felt and how bad it got for you. But, look at what you’ve achieved! You are an inspiration and I want to thank you for sharing your story. It will help young people to know that they can get through what you have. I also wanted to share a few websites with you – these are by/for young people with IBD, some of whom have had surgery and others who haven’t. I think you’ll find quite a lot of support out there.
    Good luck to you.
    Websites:
    http://www.girls-with-guts.org/
    http://www.facebook.com/pages/Lets-Talk-IBD/173363562736069
    http://www.bloodpooptears.com/
    http://uncoverostomy.org/blog/
    http://www.ucandcrohns.org/
    http://ucvlog.com/

    • Erin
      Erin September 13, 2012 at 7:14 am #

      Wow, shes going though that at 6? That’s Amazing.
      One thing i didn’t mention so much in my story was how great my mom was through all this. I know it was a lot for her to deal with but she was there for me every step of the way.
      I would just like to say that no matter how bad it gets, try to look on the bright side. The thing that helped me with it most was joking about it, maybe not so much now when shes 6 but when she gets older that will help.
      I’m sure you’ll be there for your daughter just as much as my mom was there for me, good luck to you both!

  5. shelly in maine September 13, 2012 at 3:29 am #

    Hi Erin,
    Way cool! You have a great outlook…I think that is the gift (yes, I said gift!) That UC gives us!
    I wanted to let you know that I was finally diagnosed at 15, symptoms pretty much all my life as IBD runs in my family I’m 44 and Med. Free for over a year (Rx strength VSL#3, omega 3’s and pretty strict diet)so there is hope and continued life despite
    (Or perhaps-in spite of!) UC…I played sports in high school, a little nerdy when it came to academics and some of my friends! and soccer in college and now work with special ed. Children.
    Just FYI…I have taken all the meds. And have become allergic or intolerant, so I urge you to be cautiously optomistic and who knows, maybe you’ll be part of some new Med. For UC?!
    Hang in there…wishing you all the best,
    Shelly in Maine(different Shelly from above!)

    • Erin
      Erin September 13, 2012 at 8:12 am #

      actually, my goal is not to just get a new med for UC but hopefully to help cure it!
      In school i am taking all of the gastro type classes i can so it will be easier to specialize in it and get into a good research program
      if all goes well by the time im 30 no one will have to deal with any of this any more
      I am also running out of choices for meds, the other day i found out that i built up antibodys to my remicade and now have to switch to humera, not to sure about the whole self injecting deal but i guess ill get used to it right?
      Thanks for the reply!

      • shelly in maine September 13, 2012 at 3:59 pm #

        Even better Erin…the cure!
        You’ll be okay with the injections…I did the pen-seemed like a quicker option,but that’s just me.
        I don’t normally rant-so I won’t! but I do highly urge you into probiotics and read up on all the new research on gut bacteria,etc. My primary care, a D.O. , actually recommended them to me along with the omega 3’s. Neither are harmful and can only help, especially the probiotics…okay, they may give you a stomach ache at first, but nothing a gas x couldn’t fix! :-) Please check it out-you can take them with traditional meds, too. You have the internet at your finger tips and research is changing…you are wise beyond your years…
        :-) Shelly

        • Erin
          Erin September 14, 2012 at 7:20 am #

          Actually i am taking probiotics already, idk if they help or not because i haven’t noticed a big change but like you said cant hurt. Ill look into the omega 3’s though, i have never heard taking those are good for uc, Ill defiantly check them out. =)

  6. uma September 13, 2012 at 10:27 am #

    Erin you are just super. I always knew that the cure was round the corner.May be you are the one who will find it.
    Good luck and best wishes.

  7. Bev September 14, 2012 at 6:28 am #

    What a gal and what a story!!

    Thank you Erin. It’s good to have you in the world!!

  8. prince choudhary November 7, 2012 at 11:04 pm #

    I salute ur story dear.we have to fight from this disease. I hv uc from 7month only.now i m 22 yrs old.i m from india.and i pursuing b.tch in elect. Engg.but from last 7month i didn,t go to colleage.my course is hanging .if i tell u my whole story then u will definately cry once time from childhood to this age.okk take care dear.god help us.

  9. Bianca November 27, 2012 at 8:09 pm #

    I may be kind of young. I’m 3 days away from being 15. Is that young enough? I’ve had UC since I was I was about 10. I’d love to have someone to talk to. I’ve never had someone else to really talk about it to. I’ve been to a camp for IBD patients. They don’t talk about anything. I mean they tried to but they weren’t very good at it. I think all I did there was eat, sleep, sit on the toliet, and exercise. That’s about it. So feel free to talk to me. Anytime you’d like.

    Bianca
    (jazzybgurl@gmail.com)

    • chetak October 24, 2013 at 5:44 am #

      chetak patel 8490875787

Leave a Reply to shelly in maine Click here to cancel reply.

This site uses Akismet to reduce spam. Learn how your comment data is processed.

iHaveUC.com is located in Menlo Park, California - United States 94025