The story of Johnny
Primary sclerosing cholangitis, ulcerative colitis
I started getting sick when I was 18.
Up until 2018, my biggest battles with physical illness were somehow catching Mono twice and whatever had been going on in my gut since I was 14. My pediatric gastroenterologist diagnosed me with IBS. Ultrasounds showed chronic hepatosplenomegaly. Colonoscopies showed scarring, but no active disease. It was assumed that I simply was having difficulty recovering from the splenomegaly that can come with Mono, and that my IBS was just particularly severe due to the mental health issues I was dealing with at the time.
A little while after I started seeing a new gastroenterologist, I contracted C.diff for the first time. I was receptive to antibiotics, so concern wasn’t as high, but then I started having C.diff symptoms again less than a year later, right before going on a trip with my family to Disney World. I was diagnosed with it again without testing, prescribed the same antibiotic, and spent the majority of the trip trying to power through the pain.
My family & I realized a little while after we got home that I’d began to lose weight.
At first, we put it off to the exercise I’d done at Disney World. I was nearly 300lbs at the time, so a bit of weight loss from a week of constant walking wasn’t out of the question, nor was it seen as a negative. I completed the antibiotic treatment for what we still thought was C.diff, and figured life would go back to normal.
I didn’t get better, even after the antibiotics. In fact, I got worse. I began sleeping 12-16 hours a night. I was constantly running to the bathroom. I kept shedding weight, I became afraid to eat, and worst of all, I started itching.
I later found out that I’d had Bilirubin built up under my skin, and the joke my mom had made in a thrift store about me being yellow was perhaps a bit more observant than either of us had thought at the time. My arms, legs, and stomach sported deep scratches constantly. I tore my skin up no matter how short I kept my nails. I started wearing bandaids all over to hopefully prevent myself from reopening the wounds, but it was so embarrassing.
None of my clothes fit anymore. My gastroenterologist referred me to a liver specialist after my Bilirubin came back as 1.1. The liver specialist diagnosed me with fatty liver without further testing because I was still overweight, suggested that my itching could be from allergies, and diagnosed me again with C.diff without doing a test.
I ended up in the hospital with a Bilirubin of >4 in April of 2019. I’d shed over 100lbs by then. I was given a HIDA scan, found out my gallbladder wasn’t even moving, and was sent to a larger hospital to have it taken out by a liver transplant specialist due to my cirrhosis.
When I met the liver transplant specialist, she almost immediately told me I’d be getting an ERCP and colonoscopy to treat & diagnose primary sclerosing cholangitis and left-sided ulcerative colitis. This was the first specialist who had ever taken action like this, and within 2 days, I was given medicine to lower the cholesterol in my bile & went under anasthesia in an attempt to open back up a bile duct that had scarred shut.
The surgeon couldn’t even get a wire through the duct, but reassured me that I was going to be alright regardless. He worked closely with the liver transplant specialist, and I overheard another patient saying they’d flown in from out-of-state to see him because of how good he was.
I finally felt able to breathe again. I couldn’t walk from how weak I was; the smaller hospital had put me on NPO for the majority of my 10-day stay, and I was only allowed to drink clear liquids in-between NPO prescriptions. At the larger hospital, they had to run a new IV because my vein was too worn out to continue using the one I had in there. But I was safe, and I had answers.
For the past 2 years since my PSC diagnosis, I’ve been slowly learning not to fear food. I’ve been watching for my warning signs and have only had one ERCP since the first so far. It’s a bit strange being diagnosed with such a rare illness. It’s isolating and embarrassing at times. Watching a doctor Google any medical condition is terrifying, especially if I’m coming in with hopes of receiving urgent treatment for said condition. But I live on.
In an odd way, I’m thankful for PSC. As I mentioned earlier, I’ve been struggling with mental health issues since I was very young. However, when I was faced with the potential of death, I learned how much I dearly want to live.
Life is funny like that. I don’t view my chronic illness as a negative anymore. I grieve the loss of my health, yes, but my mental health has never been better. I feel motivated to live every day to the fullest. I love teaching people what I know about the body.
I’m aware that not everyone has this experience with chronic illness, and that’s okay. For me, though, I’d like to think I’m pretty at peace. As long as I keep moving forward, whether walking or wheeling or using crutches for support, I know I can tackle whatever problems are sent my way.
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