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My Long Journey

Hello! My name is Jordan, I was diagnosed with IBS at the age of 9 then with IBD at 10. I’d say for the first 3 years it was somewhat manageable. Then my life got torn away from me.

At 13 years old I was an avid athlete, but it got to the point where I couldn’t run anymore. I couldn’t play with my friends. I couldn’t be out on the field with my soccer team. The pain was just incredible for a lack of better description. My doctor started me on enemas and prednisone. By the time I was a freshman in college, I was a depressed mess. My whole life I’ve been below average on the weight scale, so I was this twig of a girl with a completely circle face and I didn’t know how to handle it. I had to see numerous psychiatrists because of how much my health and home life were taking a toll on me. They say IBD is a stress induced disease. During this time my parents divorced so you can only imagine the flare ups I had. Fast forward to 16 years old. My doctor told me it was a chemo variation drug, remicade. Sitting in that room with an IV hooked in for 7 hours straight, me and my mom did nothing but cry that whole time. I did somewhere around 8 rounds of that before I started to experience side effects. These have followed me into my adulthood. I have horrible arthritis, my skin has developed an allergy to sun exposure. Overall it really ravaged my body.

I give up on that for a good year, then next on the list is Humira. I was 17 at this time and it was still a fairly new drug. There isn’t even a word to describe how insanely painful that medicine was. My 14 year old brother would have to hold me down while my mom injected me and I just screamed like someone shot me with a bullet. I just couldn’t do it. I maybe lasted a total of 4 shots. Fast forward to 18 years old. I’m in love, I’m in college, I’m happy, I even started to work out, I’m at 115 pounds and that was the highest I’ve ever been. One night I woke up dripping sweat. My abdomen felt like it had turned to concrete I couldn’t move. I tried screaming for my mom to wake her up and had to drag myself to her bedroom. She carried me to the toilet and I was vomiting profusely. Here comes the ER trip that ruined my life. We’re sitting in the waiting room, I’m vomiting into a bag and sitting in a wheelchair. All of a sudden I start screaming because all of my limbs and extremities had gone numb. They finally rush me back. I’m put into children’s intensive care unit. I’m so underweight that they couldn’t classify me as an adult even though I was 18. They tell me I’ve contracted Diverticulitis.

First week in the PICU they tried to insert a PIC line into my arm. Busted an artery in my arm and blood is gushing everywhere. My dads cursing the doctor, my doctor is sobbing. They come in to weigh me and I’m 92 pounds. An 18 year old. Fast forward to the next week. I haven’t eaten in nearly 16 days and they have to insert a feeding tube into my nose. Something irritates my body about that tube and my pancreas starts to fail and I experience pancreatitis. At this point I’m hooked up to at least 5 different bags of God knows what, then they put in epidural in my back to help the pain. Three days pass and it subsides. A pediatric GI comes in to discuss my options. Theres a new drug he wanted me to try when I got out of the ER. Another week passes and my colon is still inflamed and I’m in a diaper having to be wiped by strangers. I haven’t walked or moved in so long I couldn’t get up to go to the bathroom on my own and my hair is starting to form dreads. A surgeon comes in the room and says we’re out of options. I’m going to lose my entire large intestine and I’m going to have to have an ileostomy. I sobbed. Harder than I think I ever had. My mom did too. They send in a therapist and a priest because I was begging them to just kill me already. Well the morning of the surgery comes. I get rolled back. When I wake up 8 hours later I’m in so much pain. I look at this horrible bag attached to my body and I vomit. After a few days of physical therapy I’m able to go to the bathroom and walk on my own. I go to the bathroom and take my hospital gown off and see myself in the mirror. I look like something out of a horror movie. My face is sunken in. I can see every bone in my body. And theres a bag of feces. Just hanging there. I collapsed. A couple days later they give me a blood transfusion. Three days after that they send me home.

Here I am. A year and 5 months later. I’m still waiting to be approved for reconnection surgery, just have to put weight on. IBD completely destroyed my life. If they hadn’t taken my options away I would’ve chose to keep my large intestine. There’s not a day that goes by that I don’t look down and hate what I see. But I thank God for my (now husband) because he’s been there with me for 3 years. Loves every part of me. And he’s the reason I keep going.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The InflammatoryBowelDisease.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Comments

  • Julie Marie Palumbo moderator
    2 months ago

    Wow, that is quite the story, Jordan. I am so, so sorry you have had to endure all of that at a young age.

    I also developed an allergy to Remicade and Humira stopped working after a year (not that I minded as it DID hurt terribly while I injected it–although the syringe was a bit more tolerable).

    The drug that put me in remission was Entyvio, however, I am now on Stelara and find it very easy to administer and it has kept me in remission for 3 years.

    I urge you to continue fighting and don’t leave any stone unturned when it comes to this disease because there are always new medications coming out and new research being done.

    I am so happy you have a loving and supporting husband, and hope that you can gain the necessary weight so that you can get the reversal of your ostomy–but in the meantime, know that you ARE beautiful and these are just warrior scars. You are alive, loved, and mobile which are 3 great things 🙂 Seeking therapy was the right decision, as it also helped me in dealing with my disease years ago and it made a huge difference in how I viewed and handled the disease (which is so important in body healing!).

    Stay strong, girlfriend!

    –Julie (Team Member)

  • thedancingcrohnie moderator
    2 months ago

    Hi Jordan,

    Thank you so much for being so transparent and sharing your story with our community. My heart goes out to you because of all you have had to endure. IBD is an incredibly hard journey and we are all truly warriors for fighting through it. And you are definitely a warrior!

    I hope you continue to heal and get stronger and stronger. At my worst I was 82 pounds so I know what it’s like to look in the mirror and think to yourself “wow, is this my life?”

    Don’t lose hope. Hope is everything. I believe that your best years are yet to come. Rooting for you, Jordan! You always have this community for support!

    Always dancing,
    Elizabeth (team member)

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