Danielle’s Story: Childhood UC To Lifesaving Ostomy
Danielle has lived with Ulcerative Colitis since the age of 12. Learn how she found a solution to an illness that robbed her from living life to the fullest. This is a story of perseverance and finding peace with a lifesaving ostomy.
My name is Danielle and this is my story. The year was 2005, I was only 12 turning 13 at the time. My basketball season was just ending and I caught a cold. All of a sudden after this cold my body didn’t fully recuperate, I only showed the signs of being tired. I slept in for all my classes but somehow still passed. All I wanted to do was sleep.
I was diagnosed with ulcerative colitis on August 28th, 2005. When I started the next year of school everyone asked if I was contagious. Not understanding what was wrong with me, I was completely embarrassed. They started me on a medication called Asacol. In grade eight I felt almost normal, but then in the summer of 2007, I fell ill again. The doctors kept telling me to take my medications, accusing me of not taking them. I had to be taken out of public school and ended up homeschooling, however, I couldn’t leave my bed because my blood levels were so low.
On January 1st, 2008, my sister’s birthday, I had a mini-stroke. I woke up feeling normal, but as the day went on my speech became slurred and only my sister noticed it. I went to have a bath. I knew something was wrong so I got out of the tub, got dressed, opened the door and yelled for my mom. I collapsed, lost usage of my left side at first. My parents asked if I could write and I nodded, it turns out I couldn’t.
My dad rushed me to the hospital that day, and I was slipped a pill and sent home. Twenty-some days later my feet swelled like crazy. My mom pushed me to go to the hospital. There they told me my blood and potassium levels were low, and I was at high risk of having a heart attack. The way blood transfusions worked then was they took your blood, it went to a taxi, from the taxi to the bus, and from the bus to the blood donor clinic in Edmonton. The blood made it to the taxi and that was it. The hospital didn’t know what to do so my dad offered to go. He drove in a blizzard that day just so I could get blood.
I ended up recovering well, and it turned out I was allergic to Asacol which didn’t help my body at all. I was then put on Imuran. After that, I lost count of how many years I was in and out of the hospital. I definitely have no clue how many needles and IVs I’ve gotten. I had to go for iron infusions almost every six months. Colitis ruled my life for so long.
The beginning of 2012 was the first time I ever got pregnant, and that was the most “normal” my body felt. I didn’t have to take any pills, I was working a full-time job, it was great. I did end up with some delivery complications at 32 weeks, but now I have a healthy 9-year-old son.
After the pregnancy, I was started on Imuran again. I ended up going to college and getting my medical administration diploma because I knew I wanted a job in Healthcare. I wanted to be the difference.
That being said, I was offered a job working at the Stollery Children’s Hospital. I was so ecstatic, I didn’t think I’d end up being a patient so quickly again there though. And thus began Humira in 2014. I hated it because I felt that colitis was controlling my life all over again. I injected myself every two weeks, to begin with. Then after a couple of years, it was every week.
In 2018 I had some ups but mostly downs. I was working as an assistant clinic manager. I wasn’t living with my parents anymore, but my oldest was still there while I tried to support us both by working. In August I rekindled a friendship with a person I had known and graduated with in high school. I immediately told him I spend a lot of time in the hospital, and it didn’t bother him. We started to date on September 6th of 2018. In October we took a trip to Texas together. Everything was amazing, and at the end of November we found out we were expecting. All I could think of was, “Yes, a break from medicine again!” Boy was I wrong.
During my first ultrasound, the technician was panicked because she was new. I was scared they couldn’t find a heartbeat, but as my fiancé says, there were two! Twins!
My colitis again wasn’t active and I wasn’t on any medications. I didn’t go back on any medications after the pregnancy because I was scared. It was a stupid decision.
My fiancé and I ended up moving down to Calgary with our kids in 2019. My first hospital visit was in June. I was doing horrible. They immediately wanted to scope me. However, I did explain to them I had to be knocked out and they failed to listen. I almost left that day refusing treatment. The only way I was going to stay was if they’d just let my fiancé in. I was scared and alone. My colitis was back with a vengeance. They put me on prednisone again. Except for every time they weaned me off, my body would start attacking my large intestine all over again. They also tried putting me on Inflectra. That also wasn’t working.
I was admitted to the hospital week after week after that first visit. Then in October, they scoped me again. They wanted to keep trying more medications, but I confronted the doctors about an ileostomy as an option. I even had one doctor tell me it would ruin my life if I got that surgery. If it wasn’t for the nurse practitioner who constantly advocated for me I would have never met the surgeon.
I met up with my surgeon and she wanted me to research it more, however, my dad got his ileostomy when I was in high school so I understood it all. She agreed I knew the risks of what could happen. Instead of booking me an appointment, she admitted me on her “on-call” weekend. She basically snuck me into the OR when she had free time, and October 11th, 2020, is when I had my entire colon removed, and got my stoma. I named her Willow.
My journey to healing was quite a long one due to being on a high dose of prednisone for so long. I also couldn’t have done it without the support of the Calgary Ostomy group, they were there for me when I had questions about my ileostomy. I couldn’t have done any of this without my fiancé’s support and my family taking care of my kids. I am grateful for everything they all did for me. Now I am fully capable of taking care of my kids. I feel robbed of all the years colitis took from me, but I know it will not rob me of more in the future.
Danielle Malashewski is a member of the Calgary Ostomy Society Facebook group.