My Diseased Adolescence

Introduction:

I’m 18 years old, and I’ve been struggling with my Ulcerative Colitis, and for the past three years, my J-pouch, since I was 11. It’s been a hard road, and how lonely it is can be maddening. But I’ve gotten amazing support from my friends, family, and boyfriend.

Some more about me:

I’m from Upstate New York, I really love to sing. I go to concerts of every kind a lot, music is my life. I used to love to play sports until I got diagnosed. Now I can only play a little, but I still do.

Symptoms:

A lot of side affects from my J-Pouch.

My Diseased Adolescence

In a nut shell, my whole life did a complete U-Turn. The summer after I had just turned 11, I started getting extremely sick. Constantly nauseous, vomiting, and of course, bloody and constant stools. My local doctor prescribed me an anti-diarrhea medication, but I didn’t have time to go pick it up that day. The next day, I could barely move, I was purely disposing blood, and I kept nothing down. My mom took me to a specialist about an hour away from us, and they told me that had I taken the previously prescribed medication, I would’ve died. Then, after hooking me up to tubes and violating me, frightening me, they came out with the result, and I was diagnosed with Ulcerative Colitis. 11 years old, only just beginning my adolescence, and they’re telling me that I’m sick. At first, I didn’t understand. Sick? Would it go away? Would they give me medicine? Why is everyone poking and prodding me? When will I get out of here? Am I going to be okay?

I spent a week in the hospital before they let me go. I was unable to swallow pills at the time, so they gave me anti-inflammatory capsules that I could empty into apple sauce. I went home, confused, but feeling a little better. Flash forward. A couple years have now gone by. I’ve been in remission on and off. Being ill is terrifying. Because you can’t enjoy that remission knowing that it’ll end. I missed a lot of school and had a hard time catching back up. I was also embarrassed to talk about it to my friends. Who wants to talk about bloody poop? Anyway, I had been just recovering from a recent relapse, when my mother and I knew something was wrong. I had recently developed an allergy to the Remicade treatments we were trying, and just went back to the 8 different pills I was on a day. That day, it was just pure blood coming out of me, and I vomited violently. I felt like I was going to die. My mother rushed me to the hospital, where upon inspection and an impromptu colonoscopy, they alerted me that I had developed an infection in the hospital that had progressed my disease so rapidly that my entire large intestine, save for about a two inch span at the end, was engulfed in pure infection. In short, my organ was literally dying. I was told I was getting surgery. I didn’t know what I was in for.

A day later, I underwent my first surgery. I went to sleep frightened beyond belief, and woke up with a piece of my ilium sticking out of my right side, and a painful, pully, plastic bag adhered to me.

I cried every day for the next couple weeks I was hospitalized. I wasn’t allowed to go home until I was able to empty and clean the ostomy on my own. I vomited at the smell. I hated myself. I felt so disgusting, and so ugly. I looked at “normal” people and went to sleep every night hoping I’d wake up like them. Two years, my life was basically on a pause, because of that ostomy. I couldn’t wear my favorite clothes. I developed a small allergy to the adhesive in the ostomy bag. I still, to this day, have an acid burn scar from times when my ilium gushed stomach acid out onto my skin. I lost a lot of nutrients this way, and as a result, when I was in 9th grade, my hair started falling out. I was nearly bald. The kids at my school were merciless. They reminded me every day of how ugly I felt, no hair, ugly baggy clothes. I had to go to the bathroom in the nurse’s bathroom in school because they didn’t want me to get picked on for the terrible s mell.
After my second surgery, getting my insides prepared for my reversal, healed, I was ready to fix this.

I went in for the smoothest surgery thus far, my reversal. I was in the hospital over my birthday.
But, when I woke up that day, I cried and cried. I no longer had a painful bag hanging off of me. I was put together, kind of. I was so happy.

For awhile, my J-Pouch worked perfectly fine. It’s been a few years since I got it reversed. I’ve had to sacrifice a lot of things. I’m not physically able to do an awful lot. If I try to play sports to my full extent, I become very ill. I deal with a lot of discomfort. But it’s become so regular that I hardly notice anymore.

I became lucky at the beginning of last year.

After years of depression, self-harm (starting when I was thirteen), self hatred and pain, I met someone. I was sure that once he saw the huge scars on my stomach, or the ones on my wrists, that he’d leave me. I always thought, no one wants this kind of baggage. I’m an emotional wreck. I still have panic attacks and nightmares connected to these experiences. But I told him everything. My disease, my depression. And he looked me in the eyes and told me that he loved me no matter what, and that he’d be here for me. He’s yet to break that vow and I doubt he ever will. Whenever my pouch is giving me problems, and I have awful stomach pains at the worst times and places, he simply holds me close until it passes.
Sometimes, at night, I lose muscular control of my bowels and have accidents. I’ve remedied this with Depends adult diapers, which I recommend to anyone else with this problem, they’re comfy and convenient.

I’ve gone through a lot of insecurity about those, and it took a little while for me to tell my boyfriend about them. But even then, he stood by me. He told me that everyone has a little baggage, and that he would love me through all of this, every detail of it.

If there were anything I could tell people like me, young boys and girls who are suffering with this; if you feel ugly, or if you feel like no one wants you or that you’re not worth anything; don’t.

You are all beautiful, in every way. And I found someone who knows every detail of this heck I’ve gone through, and he’s my everything and I’m his. I thought I’d never find anyone who’d accept me, but I did. And you’ll find that someone too. And you’re so strong. You’ve gone through so much, and you’re still standing. That’s amazing.

I’ve been doing quite a bit better lately, both mentally and physically.
I owe it a lot to my boyfriend, and my family, without whom I don’t know what I’d do.
Anyway, my name is Dannielle, I’m 18 years old, I have a J-Pouch, and that’s my story.

Medications:

Until my body started to reject it, I had a lot of success on Pentasa. It worked for a couple years and kept my remission strong.
I developed an allergic reaction to the Remicade treatments I was on.

written by Danni

submitted in the colitis venting area




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7 Responses to My Diseased Adolescence

  1. Polly
    Polly April 4, 2013 at 9:21 am #

    Hi Danni,

    Thank you for sharing your story. I’m sorry to hear about all your troubles. :(

    Congratulations on finding such a wonderful and mature bf who is willing to support you through all this!
    I’m so glad to hear that you’re doing much better now both physically and mentally. We’ve all been there… thanks for cheering the rest of us on and reminding us that it will get better!

    Hugs,
    Polly

  2. bev April 4, 2013 at 2:28 pm #

    Very good and inspiring story, Danni. You will help a lot of people out there.

    Thank you for that…you’re right…you ARE beautiful.

    :)

  3. joanna April 4, 2013 at 9:01 pm #

    hey danni. i started crying as i read your story. you’re right. this disease makes you feel really ugly. since i was diagnosed, i haven’t even imagined having a pertner. i’ve worn depends for a while and don’t want any person (outside of my family) seeing them. it’s so embarassing. i seriously never even think that i will end up with someone due to this illness and it does make me sad. i just wouldn’t want to burden someone with my problems- at least my family has to love me.

  4. Bec April 5, 2013 at 5:52 am #

    Hi danni, thanks for sharing your story with us. That takes a lot of strength in itself! You sound like you’ve endured so much in your life so far and seem older than your age! I suppose life experience does this.

    I have UC diagnosed about 3 years ago I have 4 children and work so just being busy and having UC is tiring. I don’t ever think I’ve been in remission so that is my ultimate goal! My youngest starts school soon so I will focus on me! Currently taking Mezalazine & azathioprone. I have been in remission taking pred though this isn’t a permanent option.

    Life is a journey isn’t it! Well done danni it sounds like your in a good place. Take care!

  5. Allison April 6, 2013 at 4:15 am #

    Danni-

    What a sad story, I am so glad you are finding your happy ending!
    Keep focusing on the positive. Get out in nature, try yoga and meditation, it feel so great….
    I am certain your health will improve, you are still so young and have a wonderful life ahead of you. :)

    All the best,
    Allison

  6. J April 7, 2013 at 4:15 pm #

    Hi Danni,

    I just had semi-emergency surgery for UC a little over 2 weeks ago, so right now I’ve got an ileostomy with the bag, but can have the J-Pouch done in the future if I choose to. I’m a 29 year old male, diagnosed in January 2012, but had symptoms of UC since March 2011.

    Glad to hear that you’re doing better and best wishes to you in the future.

  7. Z April 8, 2013 at 11:15 pm #

    Hey there Danni :)

    Im so glad you have someone who loves you for who you are, and who makes feel loved and beautiful.
    It caught my attention when you said sometimes your jpouch acts up “at the worst times and places” it sounded like IBS to me…? I could be wrong but i think it may be worthwhile for you to try a diet called the Low Fodmaps diet. You can try it and see if that makes your pouch more stable. Dieticians should be able to help you do the diet. Also, colostrum (from grassfed cows) may help.

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