By Alyce Collins
IF HAVING her intestines sticking out of her stomach wasn’t bad enough for this woman, things only got worse when her stoma became infected with a flesh-eating disease, but despite the pain she fought through to carry her second baby.
Part-time MRI technologist, Sophie Green (29) from Connecticut, USA, had lived with hospital trips and abdominal pain since she was 16, until finding out she had Ulcerative Colitis at the age of 24. Despite her doctor’s medication showing no significant help, Sophie kept her condition under control with a monitored diet.
In 2014 Sophie and her husband welcomed their first child. After experiencing severe rectal bleeding at 13 weeks, doctors placed Sophie on steroids to stop her from losing worrying amounts of blood. However, after having her son, Sophie weaned herself off the medication and noticed a sudden flare in symptoms once again.
After years of failed medication and severe pain, Sophie went through with a total colectomy in December 2016, leaving her with a stoma bag attached to her intestines. Following her operation, Sophie sensed an immediate relief and her pain was gone.
A couple of weeks after her operation, nurses who were changing Sophie’s bag noticed an infection around the stoma where the skin had turned purple. After doctors followed this up and checked it over, Sophie was diagnosed with Pyoderma Gangrenosum, an auto-immune disease that eats away at the affected area of skin and forms ulcers.
Doctors tried to stop the disease from spreading with steroid injections into the area, which thankfully were successful, allowing Sophie and her husband to try for their second baby.
“As a 16-year-old girl I was very embarrassed by it all,” said Sophie.
“At the worst of phases I was probably in the bathroom with diarrhoea about 50 times a day and struggling not to throw up after each time I ate.
“I tried to hide it and didn’t like to talk about what was suddenly going wrong with my body, and I just got sicker and sicker.
“My parents helped me to find ways to control my symptoms with my diet and I started taking some holistic supplements which helped. By eliminating gluten from my diet, I stopped throwing up after eating, but the diarrhoea persisted.
“I got married in 2012 and shortly afterwards we decided to see a Gastroenterologist for an official diagnosis and was scheduled for a colonoscopy in November 2013.
“After the procedure, my doctor came out to talk to us and said that I had severe Ulcerative Colitis. He sent me home with a prescription of oral steroids which were supposed to target my colon, but the medication didn’t seem to do much for me and I felt worse.
“I went back to what had worked for the last eight years, watching my diet. No processed foods, no sugar, no gluten, no soy or corn.
“In January 2014 I got pregnant with my first child and I felt amazing. I thought maybe pregnancy had cured me. Until at 13 weeks I woke up to rectal bleeding, so I had a short stay in hospital and was able to go home with oral medication.
“After the birth of my son, my flares became worse and I got very sick. I started looking into the option of surgery, but it was such a big decision as it couldn’t be taken back after it was done.
“I took a period of three months to meet doctors and discuss the procedure, and then on December 8th, 2016 I went in for my total colectomy.
“I felt an immediate relief following surgery, I was so unbelievably overjoyed with the bag of poo that was now part of my everyday life because it gave me so much freedom to live my life.”
In January 2018, Sophie gave birth to a healthy baby, a second son for her and her husband but struggled with her Pyoderma Gangrenosum towards the end of the pregnancy.
“My Pyoderma Gangrenosum was extremely painful towards the end of my second pregnancy,” said Sophie.
“At 39 weeks we went in for an induction to relieve the pressure off my skin as the ulcers were steadily getting worse.
“The outbreak is underneath my stoma so with my growing belly I couldn’t even see my wound when I would do my bag changes.
“I wish that I could say that after giving birth my skin cleared up like we all hoped, but it hasn’t. It’s gotten steadily worse. My body keeps tearing into itself with no thought of stopping.
“The most difficult part was seeing the wound spread on my belly and trying not to let those days it would spread affect the way I treated people around me.
“Trying not to give into the general discomfort of pregnancy with the added pain of a wound on my belly was very difficult.”
Sophie has shared her journey on Instagram to reach out to other sufferers and to show the candid truths of having a stoma.
“I’ve had an overwhelmingly positive response to my story on Instagram,” added Sophie.
“I chose to begin sharing my story at the beginning of my first surgery. I wanted to encourage others in whatever they are battling.
“I have met such an amazing group of people who have both helped and supported me and I am so thankful for all the people it has allowed me to connect with.
“Stomas and Pyoderma Gangrenosum aren’t understood by society very well. Pyoderma Gangrenosum isn’t a common condition and isn’t very well understood even by the medical community.
“My condition has made me appreciate life so much more. When you have bad days, you realise how good the good days really are.”
You can find out more about Sophie’s journey by visiting her Instagram, @_winning_life_