Diagnosed and Then Diagnosed Again

I first started suffering with symptoms in autumn of 1996. Puberty had hit me hard, I was 15 and carrying a bit of weight for the first time in my life. Then suddenly, I started feeling nauseated every morning and evening and having diarrhea. I told no one until that December. I was visiting my godmother in New York and she noticed straight away that something was wrong. When I told her about my symptoms, she was unsurprised that my single mother, who was working two jobs and having an extra-relational affair had not asked after my health. It was 4 months later when my mother asked why I wasn’t eating at the table and why I only ever ate ramen and I told her that the wooden chairs hurt my (now protruding) spine and ribs and that I couldn’t stomach more than broth and noodles.

She took me to a psychiatrist. She was sure that I was bulimic and I had zero alternative ideas. When she picked me up from my first session (during which I had to run to the toilet 3 times) the psychiatrist gave her the name and number of a gastroenterologist.

I remember my literature teacher (who’d had an extra hallpass made especially for me, so that I didn’t need to raise my hand to go to the toilet) saying “I wish I had what you had for a couple of weeks” (referring to my weight loss) I told her that I wished that I only had it for a couple of weeks as well.

After a colonoscopy, I was diagnosed with Colitis and given prednisone, which I vomited up each day for a week and a half. I was then admitted to a hospital in the next state over (where my father’s insurance covered me.) After a week of more weight loss, TPN, lipids and IV steroids and antibiotics, I was transferred to a larger hospital in the state capital and wasted away another week, with more IV drugs adding 6MP.

Then there was the day where doctors and nurses turned colder and more standoffish. They started talking about ostomies, (a word I’d never heard) and an hour later a nurse came in to mark me. I had thought that a stoma was theoretical, but my blood tests showed that I may be septic and they’d need to operate urgently to remove my colon. My mother was with my siblings in our home state so my estranged father came to sign the forms and wait with me while I spit up bile and waited for surgery.
I had toxic mega colon (the doctor said that my colon resembled cheesecloth.) They found no inflammation above the colon and thus felt sure that I had UC and that my stoma would be temporary.
I returned home in July with my bag, still malnourished and on a pickline, ready to be a teen with a bag. I was slowly gaining strength and weening off pills by October, but as I head out to go to a Halloween party with my friends, I fainted. the next day, an abscess in my labia had become more obvious and I had gotten my first fistula. My doctors still didn’t think I had Crohn’s. That diagnoses didn’t come until my anastamosis and loop stoma surgery in January. Granulomas, my fistula and a prometheus test confirmed Crohn’s then.

For some reason, they still reconnected me and I had a consistently inflamed jpouch for the next 20 years, flaring every April and October. I tried and was ultimately unsuccessful with every Crohn’s medical treatment available in that time. When my mother died of bowel cancer in 2014, my doctor started talking about a permanent ostomy; “cancer loves inflammation”, he said. It took 2 years, a failed attempt at IVF (interrupted with yet another fistula – the 6th – and surgery) for my husband and I be ready to take the leap. I had my inflamed pouch and a few more inches of intestine removed in February 2016 and have been medication and flare-free since then. I also started the #ostomybomb. I wish that 16 year old me had been more pro-ostomy and had kept the initial one. (If we’re wishing, I also wish that she’d had a more attentive parent and/or health insurance after age 18 to keep her health in order.) I put ostomy bags on beautiful nude statues with the hope that other young people might see it and have a positive association and know that beautiful and sexy bodies are not marred by a bag.

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

View Comments (3)
  • thedancingcrohnie moderator
    1 month ago

    Hi @wessywok,

    Thank you so much for sharing your story. I know you will inspire so many in our community.

    You have been through so much and I applaud your positivity and desire to pay it forward by creating the #ostomybomb. Bravo to you, and your strength.

    Wishing you the best in health.

    Always dancing,
    Elizabeth (team member)

  • Meagan Heidelberg moderator
    7 months ago

    What a journey, Wessywock! Thank you SO much for sharing your story with us and our community. You certainly went through quite a lot to get to where you are now. I absolutely love your outlook. We appreciate you being a part of our community!
    Meagan, InflammatoryBowelDisease.net Team Member

  • SusanHU moderator
    8 months ago

    Thank you for taking the time to share your story @wessywok – we appreciate it! It sounds like you’ve been through quite a lot and we’re so glad you’ve found our community. You’re not alone and we love your attitude. =)

    – Susan (Team Member)

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