Katie: My ostomy gives me freedom

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Katie received compensation from Coloplast to provide this information. Each person’s situation is unique so your experience may not be the same.

Acute Ulcerative Colitis

I’m Katie, I’m 31 years old, and I have Ulcerative Colitis.

I’m originally from the UK and moved to China to work and try something new in 2016. After almost 3 years there I met my then partner, who was from Ontario. We moved to Hong Kong for a few more years and then left in 2021 during the pandemic, to move to Canada together.

During my time in Asia, I began slowly developing unpleasant symptoms, however I couldn’t seem to get a definitive diagnosis, even after several colonoscopies.

In February of 2022, living in downtown Toronto, I became very unwell, with excruciating pain in my lower abdomen, so I headed to the emergency room. After just a CT scan and some blood tests, I was diagnosed with Acute Ulcerative Colitis and was told my colon may have perforated had I not been admitted at that time. The next morning, a stoma nurse came to see me, and told me it was likely I would have ostomy surgery. Having never heard those words before, I just shrugged it off. She asked me to stand up and placed a dot on my abdomen with a Sharpie and told me “This is where your stoma will be placed IF you need surgery.”

Over the next 3 weeks, my health rapidly started to deteriorate. Doctors had told me that my best shot at any quality of life moving forward was to have a Subtotal Colectomy and an ileostomy. I couldn’t believe it had come down to this - it didn’t feel real.

Connecting with Others Helped Me Face Ostomy Surgery

I had met so many other brave and incredible women in the hospital, all different ages and different illnesses and some of them had stomas and ostomy bags. Being social on the ward, making friends and asking questions really got me in the right frame of mind for the potential surgery. It made the long, boring days more fulfilling and helped me stay strong.

I remember the day I signed off on the surgery. My partner at the time came to see me almost every day, and that day I remember asking him to help me shower. I had lost so much weight and felt so weak. I looked down to see ‘the dot’ on my abdomen that the stoma nurse drew to the right of my belly button.

I had been ignoring it for weeks, but now I knew that in a few days’ time, my stoma would be there. My partner held me while I cried as that reality set in.

Over that weekend, I had a severe reaction to one of the biologics I was trialing, and my liver began to fail. The doctors were left with no choice but to put me to the top of the emergency surgery list. After the surgery was done, I woke up early, around 3am and braced myself to pull back the covers and look at my brand-new stoma. There it was, in a clear Coloplast ostomy bag, my new ileostomy, peeping through.

Coloplast Products Helped Me Adapt to Life with an Ostomy

My mum, terrified of flying on an airplane, got on a flight alone for the first time in 15 years to be by my side post-surgery, as I adapted to this new normal. She walked from my downtown apartment to the hospital every day to be by my side, and she was there for my discharge, to help transition me to life back at home.

After 5 weeks in the hospital, there was no better feeling than my own bed and being with my mum.

Throughout the following weeks, I tried a bunch of ileostomy products but fell in love with the SenSura® Mio line from Coloplast. I also use their Brava® products like the adhesive removal spray and the powder. I use the protective rings religiously – I can’t do a bag change without them!

The Coloplast Care team is also always available on the other end of the phone line to offer amazing advice, and in all the other countries I’ve travelled to, as well.

While I was healing, I enjoyed connecting with fellow ostomates and learning tips and tricks for things like bag changes and avoiding leaks. I made my own Instagram and TikTok channels and quickly made a lot of online friends of all genders and ages, who were all just like me! It was a kind of therapy and really made me feel supported.

My Ostomy Gives Me Freedom

Unfortunately, my subtotal colectomy surgery didn’t cure 100% of my Ulcerative Colitis and around November 2022, I began experiencing extreme joint pain, muscle pain, fatigue, nausea, rectal bleeding and was just too weak to do anything. I told my doctors I was not ready for any more surgeries yet and I was advised by my GI to start taking Stelara, a biologic immunosuppressant every 8 weeks. Thankfully, it is working so well and I’m very grateful that was an option for me because it’s honestly made me feel healthier than I have in a long time.

Now, it’s just been over a year, and I can confidently say I’m doing a lot better. Of course, life will never be exactly the same, however I have a lot more freedom and confidence because of my ostomy. When my Ulcerative Colitis was at its worst, I was chained to the bathroom for hours and in a lot of pain.

I didn’t realize how much freedom my ostomy would give me, and it’s definitely the best decision I could have made.

Since getting my ostomy, I’ve happily travelled home to England, been on vacation which included going to the beach and swimming. I’ve attended so many events like festivals and club nights. I’m determined to continue living life to the full!

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