In today’s episode, 12-year Ulcerative Colitis Warrior Shelly Sulfrain shares her IBD journey and how an ileostomy gave her back her life. At the age of 29, Shelly was working as a pharmacist and enjoying life, having just finished school. Then, her first symptom of blood in her stool led her to a trip to the emergency room. It took a few more visits to her primary care doctor and eventually a gastroenterologist to finally diagnose Ulcerative Colitis. From there, she faced a number of highs and lows as she cycled through medications and faced life-threatening side effects throughout the course of her journey.
Over the years, Shelly found brief periods of remission, but ultimately kept finding herself back in a flare and struggling to keep the symptoms away. She battled one major flare right before her wedding and found remission on Imuran while she carried her baby. But, after delivering a healthy baby boy, she went into her worst flare yet and was started on Remicade. Four years later, she experienced a life-threatening side effect.
The brain fog she developed and difficulty in finding the right words were a result of her neurons not functioning properly; a rare side effect of Remicade. It also meant there was a chance that she might only have a few months to live. While an MRI confirmed that she was not facing death, the damage that had been done was not reversible.
Her options for medications were dwindling and, for Shelly, it was a sign that the disease was getting worse and that it was winning. She went on to try Entivyo, Humira, and Xeljanz, but nothing worked. By this point, she was in a bad place emotionally and mentally and she leaned into meditation, prayer, and journaling to help her cope with the anxiety, stress, and depression.
Finally, her doctor suggested surgery. While she dismissed the idea at first, after reaching out to a number of different ostomy advocates on Instagram, she was ready to consider it. She gave one last effort to exhaust all non-surgical options and sought the help of a functional medicine doctor. After she still couldn’t find relief, she was ready for surgery. Though she faced a number of complications after her first j-pouch surgery, a year later Shelly had an ileostomy and today is living life to the fullest. She’s gained a lot of insight over the years and although times may get tough and bleak, she recognizes that having a positive outlook is vital and encourages others to remember that they are not alone.
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