By Alyce Collins
THIS STUDENT hated her ostomy bag which made her ASHAMED of her body until she had it REVERSED, but an erroneous surgery led her intestines to LEAK and she had to have the stoma bag REFITTED – but now she flaunts it and claims it’s SEXY because it saved her life.
Psychology student Sofia Ali (19) from Toronto, Canada, started experiencing intense stomach pain when she was 16, which she initially assumed was just a stomach bug.
However, she started having to use the toilet over 20 times a day, noticing blood in the toilet after. Sofia kept it to herself initially, but when she started to lose control of her bowels she went to the hospital, where she was diagnosed with constipation and prescribed laxatives.
Sofia’s health deteriorated within weeks and she went to a different hospital where she spent a week on an IV drip, antibiotics and had a colonoscopy which led to her being diagnosed with ulcerative colitis.
By October 2016, Sofia was admitted to hospital with a fever and low heart rate, subsequently requiring an emergency colectomy as doctors feared that Sofia’s perforated colon would become septic if they didn’t operate immediately. Sofia awoke with an ostomy bag, which devastated her and made her feel ashamed of her stomach.
Sofia longed for a reversal surgery as she no longer wanted to be ashamed of the bag she was carrying around. In October 2017, Sofia finally underwent the reversal surgery to get rid of the ostomy bag, leaving her with a j-pouch, a makeshift colon created with the small intestine, allowing her to go to the toilet once again.
Sofia was glad to be starting university without a stoma bag due to the stigma surrounding them. Unfortunately, Sofia’s surgeon didn’t see that there was a leak in the j-pouch region, causing a rectal abscess. She was once again admitted to hospital when the leak was found, and in July 2018 Sofia was forced to have an ostomy refitted because of the error.
Now, Sofia’s stoma bag has gone from her most hated feature to her most beloved because of its power in saving her life, and she wants others to deny the stigma of ‘smelly’ stoma bags.
“My symptoms began when I was 16 and I was running to the bathroom more than 20 times a day, blood filling the toilet every time,” said Sofia.
“My stomach pain was almost constant, and it got worse every time I ate anything. It only got better with pain medication.
“I was sure I had a stomach bug for two weeks and I remember worrying that I wouldn’t be able to sit my exams if I couldn’t keep any food down. I kept it from my parents because I didn’t think it was serious and thought it would go away on its own.
“It wasn’t until I began to lose control of my bowel movements and was too weak to leave the house. Then I knew it was more than a stomach bug, so I went to the hospital.
“At first, they did some ultrasounds and X-rays of my abdomen, but they sent me home with laxatives for constipation.
“After that, I became extremely ill and my already sick colon began to get much worse. Eventually I went to a different hospital and spent a week on IV fluids and had a colonoscopy before being diagnosed with ulcerative colitis.
“I was mostly in shock because it was pretty terrifying to hear those words. My doctor reassured me that many people live with the disease and just take medication to lead a normal life.
“I started on Prednisone and while it controlled my symptoms, they never went away. I was still using the bathroom 20 times a day, eating next to nothing and losing weight rapidly. I spent that entire summer in hospital, at least once a week. I began to develop anaemia and was getting blood transfusions frequently.
“In October 2016 I was admitted to the hospital with a high fever and low heart rate. Then, within a few days I was being wheeled into surgery.
“While I was getting prepped, I made the nurse promise they would take out my colon because I had no quality of life with it. I was scared at first and nervous to see a bit of my intestine on the outside of my body.
“As much as I was happy to be alive, I hated my ostomy. I was so ashamed of the bag on my stomach. I thought that if people knew about it, they’d think I was gross and that no boys would ever want to be with me.
“My health concerns took their toll on my life and they held me back in school, so I had to be home-schooled after my colectomy. After a year, I was ready to attempt life without a bag because I wanted to start university bag-free. I was tired of feeling ashamed of my body.
“I had the j-pouch created in October 2017 and I was so excited to look at my stomach and not see a bag. Unfortunately, the surgeon failed to recognise that there was still a leak in the staples connecting my j-pouch to my rectum.”
For the months that she was without a stoma bag, Sofia still suffered rectal pain, but doctors thought it was just haemorrhoids, and didn’t look into it further.
Eventually, in June 2018, Sofia had an MRI and CT scan which revealed the leak in her intestines, causing an abscess and fistula around her rectum.
“I spent all the time with my j-pouch in constant rectal pain. I saw countless doctors who told me it was a haemorrhoid or a fissure,” said Sofia.
“After an MRI and CT scan, they found the leak had resulted in an abscess and fistula forming around my rectum. I was having intestinal spasms, bleeding and severe pain because of it.
“I had to have an ostomy refitted on July 3, 2018. My entire perspective of my ostomy had changed.
“Those months with my failed j-pouch showed me that my ostomy gave me my life back, and I am so grateful for that. Now, I’m more confident about my ostomy and I wouldn’t be alive without it.
“I’ve fallen in love with my body, bag and all. I’ve learned so much about what it means to live and be happy. When I was healthy, I was so preoccupied by minor things, like how I looked, what parties I was invited to or what mark I got in a test. I used to complain that my life was terrible if I couldn’t go out with my friends.
“My ulcerative colitis forced me to grow up and look at the world in a different light. Having a chronic illness made me stop worrying about the little things, and that superficial beauty is overrated.
“I don’t want anyone to feel the way I did and think they have to hide their bag because it might not be considered normal. My ostomy bag is sexy because it keeps me alive.
“I may have lost control of my body, but I’ve gained control of my mind. Having an ostomy doesn’t put a stop to your life, it gives you your life back. Ostomies aren’t gross, smelly or for old people – they are life-saving devices.”
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