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Just Me & My Crohn’s

June 23rd 2009… I was 11 years old and it was the day I was diagnosed with Crohn’s disease. It has been an unpredictable roller coaster ride, to say the least. I’ve had many highs and just as many lows with my journey. I’ll mainly be sharing some of the lows in this post and giving thanks to those that deserve recognition.
I’m not asking for pitty because of this, all I’m asking is to bring awareness to this “crappy” disease and know some of my story. So feel free to ask questions and start a conversation! Also you can share this if you want!

My Treatment Journey

Unfortunately I’ve been on every medication for Crohn’s (Azathioprine, Infliximab, Vedolizumab, Adalimumab, Methotrexate, Prednisone, Mesalamine and multiple more that I just can’t remember). I’m now officially on my last medication Stelara (Ustekinumab). If Stelara were to fail, I have nothing left- I’ll either have to go on clinical trials or possibly more surgery. Since everything previously failed, I had to have an anastomosis (small/large intestine resectioning) in February 2018. Luckily since surgery, I’ve had no signs that the disease has come back. Before surgery, I was given the odds of either having six good months or five or more good years- let’s hope for the continuation of the better outcome!

Besides all the medication trials and errors, my Crohn’s Disease effects much more than my stomach/intestine- it effects my mental/physical health, my joints, my immune system and I’ve lost many friendships along the way.

Mental Health

I’ll straight up say this, I have anxiety and depression- I’m not afraid to admit it. With the mental health side of Crohn’s it can sometimes cause the disease to be 150% worse. Currently the anxiety gets to the point where I cannot even sleep at night because I’m constantly thinking of “what if” and “why” situations and worry about things that could never happen. In order to actually fall asleep, I need to take a tranquilizer/antidepressant/anxiety medicine (Remeron) to put my body to rest. The depression side of it can get to the point where I don’t even want to get out of bed in the morning and live.

Joint Pain

Crohn’s also effects my joints- I suffer from chronic joint pain. It took years for doctors to finally listen to me and get me on Cymbalta (used chronic joint pain/anxiety/depression), it helps me be able to get up without feeling any pain whatsoever. Three days after I got prescribed Cymbalta. I knew the medication was working because I was able to get up and not have any joint pain. Yes, I know I’m on two antidepressants- I some days don’t like it either. Hopefully one of these days I’ll be able to take a more natural route to my treatment and cut some pharmaceutical medications out of my life.

Physical Health

With my Crohn’s, I’ve also had physical changes to my body… I can lose 20+ lbs within a span of 4 days. When I get sick, my body will absorb whatever body fat I have (minimal to take from anyway) and I can get to an unhealthy weight. The lowest I’ve been in the past 5 years was 92 lbs- that was when I was at my sickest and worst. The heaviest I’ve ever been in my life was when I was on my picc line and I got up to 142 lbs. After I had surgery in February ’18 and lost 15 lbs, which was expected. Right now as I type this out I’m at 130 lbs- my doctor is quite happy with my weight and is so happy that my health seems to have done a complete turnaround from where I was. I can finally live my life and not be in pain (from my stomach) Another physical change is I have a pretty big scar going down my abdomen and two other scars from where cameras and a drainage tube was placed. When people see them, they question it- honestly I’m okay with that because it’s my story to tell. I love when people ask me questions (even if they’re personal) because I can help educate and end the stigma of it just being a bathroom disease.

Having Crohn’s made my immune system pretty much nonexistent because of being on biological/chemotherapeutic medication. If I come into contact with anyone that is sick, I have a much higher likelihood of getting their viruses/bugs and it could possibly even worse. To protect me from this from happening, I have to get shots regularly to try and help my immune system be able to fight off illnesses.

Along with all the mental/physical health changes, I’ve learned that friends come and go quite easily. People view you as “damaged” and just move on and forget. Reactions can be “dude, you always seem to be sick” to “wow you’re sick again” and then they just leave without even saying why… That especially hurts the most and can keep me up at night but after a while, you become numb to it and just learn to accept it and move on with life.

Cheers to 10 more years and maybe one day a cure 🥂

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
    3 months ago

    I feel like I could have written this article myself! I, too, was diagnosed in 2009 (January) and have suffered from the same symptoms as you. And, I am now on Stelara since 2016 and have been in remission for almost 3 years 🙂

    You are definitely not alone here, and I thank you so much for sharing your story. Be well.

    –Julie (Team Member)

  • thedancingcrohnie moderator
    3 months ago

    Thank you for sharing your story. You have certainly been through a lot and I can’t imagine being diagnosed with Crohn’s so young.

    It makes me happy to hear that you are doing well these days and that you are sharing your story to spread awareness. It is so important for us to be open so that more can understand the complexities of this disease.

    Stay well, and I wish you the best!

    Always dancing,
    Elizabeth (team member)

  • Brooke Abbott moderator
    3 months ago

    Thanks, @joehub97 for sharing your story. I know it’s not easy, but sharing our stories, help so many patients!

    Cheers!
    Brooke
    Team Member

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