Inflammatory bowel disease is excruciating. Carrying a child and giving birth can be, too. Suffering both is an overwhelming ordeal, to put it mildly.
But that was just the start of things for Sophie Green, 29.
The Newhaven, Connecticut-based MRI technologist developed relentless rectal bleeding during her first pregnancy due to her ulcerative colitis.
After the birth, doctors tried to quell it with medication, but she was eventually forced to have her colon removed, and have a stoma bag attached to hold her waste.
Within two weeks of that operation, the opening in her stomach where the stoma bag was attached had gone purple, and tests revealed she had contracted pyoderma gangrenosum, a condition that eats away at the surrounding skin.
Eventually, doctors brought it under control – but fell short of curing it – with bouts of steroid injections.
But still, they were amazed when Sophie decided she wouldn’t let it get in her way, and conceived again, with her husband Tim.
The second pregnancy – constantly battling a flesh-eating infection – was arduous.
However, now a mother of two healthy boys, Sophie insists it was all worth it, as she shares her story in a bid to rally for more research into pregnancy and digestive conditions.
Sophie had lived with hospital trips and abdominal pain since she was 16.
In 2013, at 24, shortly after getting married to Tim Stevens, she decided she needed to have a colonoscopy, and she was diagnosed ulcerative colitis, an inflammatory bowel disease that fuels ulcers in the stomach, causing diarrhea, constipation, cramps, and fatigue.
The oral steroids her doctor prescribed did little to quell her symptoms, but a carefully constructed diet kept them at bay – of no processed foods, no sugar, no gluten, no soy or corn.
‘As a 16-year-old girl I was very embarrassed by it all,’ she explained.
‘At the worst of phases I was probably in the bathroom with diarrhea 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 diarrhea persisted.’
However, this was derailed when she became pregnant her first child in January 2014 with her husband.
The pregnancy started great – even banishing all of her previous digestive issues.
‘I felt amazing. I thought maybe pregnancy had cured me,’ she says.
But at 13 weeks that changed. She developed severe rectal bleeding, which persisted for three months.
Eventually, doctors placed Sophie on steroids to stop her from losing worrying amounts of blood.
Over time, she weaned herself off the medication. Steroids are tough on the body, and not something she wanted to be on permanently.
But even a slight reduction in her dosage triggered a sudden flare-up in symptoms once again.
This cycle continued until, in December 2016, her doctors said the only viable way to end her pain would be to perform a total colectomy to remove her entire colon.
Instead, she had 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 were successful, allowing Sophie and her husband to try for their second baby.
In January 2018, Sophie gave birth to a healthy baby, a second son for her and Tim.
But she 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 realize how good the good days really are.’