Gabrielle is a 23-year-old medicine student and ostomate whose journey has been a long and challenging one. A series of difficult diagnoses and surgeries saw her become very ill, and she has faced more obstacles than most. She has no colon, rectum or anus meaning she lives with an ileostomy, as well as a feeding tube. However, she says her ileostomy surgery improved her quality of life and she continues to work hard on achieving her degree.
She has shared her story with us to help other ostomates or people on their diagnosis journey. Continue reading to discover Gabrielle’s inspiring story of ileostomy surgery and beyond, told in her own words.
Gabrielle’s journey to diagnosis
“I was previously fit and well. I was a competitive dancer from the age of 2 and hadn’t missed a day of school. Then, aged 14, I had an operation for what they thought was a ruptured appendix and appendicitis, but turned out to be a rare malignant tumour.
From the day of that surgery, I was never the same healthy young girl again. The tumour was the ‘trigger’ for everything to come. My colon started shutting down not long after the operation, and I had every test under the sun, which showed I had atonic megacolon.
I was struggling with daily debilitating symptoms of abdominal distension, pain, nausea, vomiting and GI tract paralysis. I tried every medication, biofeedback, hypnotherapy, irrigation, enemas… nothing worked. I was in a vicious cycle of my bowels being paralysed, needing a ‘wash out’, and requiring truckloads of laxatives. It was torture.
At 18, I was diagnosed with Ehlers-Danlos syndrome. This is a genetic connective tissue disorder that affects your whole body. For me, it affects my heart, lungs, immune system, skin, joints (dislocations, scoliosis, degenerative disc disease, osteoarthritis) and GI tract.
Gabrielle’s ileostomy surgery
I was referred to a specialist surgeon because all of the medical and alternative treatment options had been exhausted. I was getting poorlier by the day.
The day I met my surgeon, she said I needed ileostomy surgery. I had my stoma created when I was 18 (during my first year of medical school). When I came round, she said if she hadn’t operated, it would have been a matter of weeks before my colon burst – it was that damaged.
Unfortunately, this wasn’t the end of my story. I got every ileostomy complication under the sun: volvulus, stenosis, strictures, prolapse, retraction, necrosis. As a result, I have had my ileostomy refashioned 9 times. I also had panproctocolectomy surgery due to developing colitis in my already damaged atonic megacolon.
So I have no colon, rectum or anus and my ileostomy is permanent.
From then to now
From age 18 to now (23), my small intestine and stomach have also become partially paralysed. I’ve had more small bowel obstructions than you could even imagine, resulting in long admissions and invasive treatments.
More recently, in September 2024, I was admitted with a severe small bowel obstruction as an emergency. But this admission didn’t go quite the way I had anticipated. I ended up being transferred to a specialist hospital where I was diagnosed with intestinal failure. I was started on total parenteral nutrition (TPN) as an inpatient.
Due to developing line infections and subsequently sepsis, I was discharged in December with no form of nutrition as my enteral feed down my surgical tube wasn’t absorbing. I lost a further 2.5 stone and was admitted again as an emergency at the end of January. I had a Hickman line placed and I have been on home TPN since.
Gabrielle’s next steps
I will be on TPN for life now unless some miracle cure comes to light! I am also due another ileostomy refashioning and small bowel resection at the beginning of July as I have a twist and stricture in my small intestine behind my ileostomy.
Even though my ileostomy journey has been quite complex, I still see my quality of life as being so much better than it was when I was so poorly with atonic megacolon. I am just coming to the end of my 3rd year of studying medicine at university, so all being well I should be starting my 4th year in September.
Studying medicine gives me a purpose and something to focus on. I didn’t think finishing my 3rd year would have been possible as I have missed 5 months of this university year so far. But it just proves you can do anything you put your mind to.”
Stoma resources
We would like to thank Gabrielle for bravely sharing her story with us and helping to smash stoma stigma. If you want to tell your story on our platforms, you can email us at info@rhodespharma.co.uk or fill in our Contact Us form.
If you are experiencing stoma problems or are worried about your symptoms, contact your GP or stoma nurse.
