When Sofia Ali started experiencing intense stomach pain in summer 2016, she initially assumed it was just a stomach bug.
But after she started to lose control of her bowels, she went to the hospital, where she was diagnosed with ulcerative colitis, a bowel disease that causes inflammation in the digestive tract.
When her condition worsened, the then-16-year-old, from Toronto, Canada, was forced to undergo surgery to have her intestine rerouted and she was fitted with an ostomy bag.
However, she longed for reversal surgery and had it performed one year later but, when her intestines began leaking, she had to have the bag refitted.
Sofia, now 19, say her bag is no longer her most hated feature and she said she wants to break the stigma surrounding the medical device.
Sofia Ali started experiencing intense stomach pain in summer 2016 at age 16, but she initially assumed it was just a stomach bug. Pictured: Sofia with her ostomy bag
She was eventually diagnosed with ulcerative colitis, a bowel disease that causes inflammation in the digestive tract. Sofia (left and right) was given medication to help control her symptoms
Sofia said that when her symptoms first began, she using the bathroom more than 20 times a day and her bowel movements were often bloody.
‘My stomach pain was almost constant, and it got worse every time I ate anything. It only got better with pain medication,’ she said.
‘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.’
Staff performed ultrasounds and X-rays, but didn’t see anything wrong with Sofia, so they sent her home with laxatives.
However, Sofia’s condition quickly worsened so she decided to visit a different hospital.
She spent a week on IV fluids and had a colonoscopy done before being diagnosed with ulcerative colitis.
Doctors aren’t exactly sure what causes ulcerative colitis, but believe it occurs when the immune system mistakes food and beneficial gut bacteria as an invading virus or bacterium and attacks it.
In October 2016, Sofia was admitted to the hospital with a high fever and low heart rate. Doctors discovered her colon was perforated and she was fitted with an ostomy bag. Pictured: Sofia in the hospital in 2017
An ostomy bag allows urine and stool to pass through a surgically-created stoma on the abdomen. Sofia (left and right) said she was ashamed of the bag on her stomach and wanted it removed
An estimated 907,000 Americans are believed to have ulcerative colitis, according to Health Union.
Treatment usually involves taking anti-inflammatory drugs or, in more severe cases, removing the entire colon and rectum.
‘I was mostly in shock because it was pretty terrifying to hear those words,’ Sofia said.
‘My doctor reassured me that many people live with the disease and just take medication to lead a normal life.’
Sofia was put on a medication called Prednisone, which treats inflammatory diseases, but her symptoms were only controlled for a short while.
The teenager was eating little to nothing and started losing weight rapidly. She soon began to develop anemia and was getting blood transfusions frequently.
In October 2016, Sofia was admitted to the hospital with a high fever and low heart rate.
Doctors discovered her colon was perforated and feared it would become septic if they didn’t operate, so she was fitted with an ostomy bag.
Ostomy surgery is a procedure that allows urine and stool to pass through a surgically-created stoma on the abdomen.
A pouch, known as an ostomy bag, is worn over the stoma to collect the bodily waste.
‘As much as I was happy to be alive, I hated my ostomy,’ Sofia said. ‘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.’
One year later, in October 2017, she underwent reversal surgery which left her with a j-pouch, a reservoir created out of the small intestine as an alternate way to pass stool.
In October 2017, Sofia (left and right) underwent reversal surgery which left her with a j-pouch, a reservoir created out of the small intestine is as an alternate way to pass stool. However, the surgery left her with a leak in her intestines and had caused an abscess and a fistula around her rectum
Sofia had to be refitted with her ostomy bag and said she is now proud of the medical device. Pictured: Sofia with her boyfriend, John
Unfortunately, Sofia’s surgeons failed to notice that there was a leak when he connected the j-pouch to her rectum.
For nearly eight months, she suffered from rectal pain, but doctors just assumed she had hemorrhoids, and didn’t look into it further.
Finally, in June 2018, Sofia had an MRI and CT scan performed, which revealed the leak in her intestines. It had caused an abscess and a fistula around her rectum.
In July 2018, Sofia had to have her ostomy bag refitted. But she said her perspective on it 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,’ she said.
‘Now, I’m more confident about my ostomy and I wouldn’t be alive without it.’
She says she hopes that other people who are in the same situation as her can gain the same confidence.
‘Having an ostomy doesn’t put a stop to your life, it gives you your life back,’ Sofia said. ‘Ostomies aren’t gross, smelly or for old people – they are life-saving devices.’