A mother who awoke from routine surgery to burn a cyst to the shocking news that she had an ostomy pouch inserted and a fallopian tube removed is now celebrating a life without crippling pain.
For months, doctors had struggled to find the cause of Michelle Tonge’s constant pain, which led to her being taken to hospital on Christmas Day with suspected appendicitis – only to have the organ examined after removal to show it was okay.
Then her second child was induced at 37 weeks, but she became upset and had an emergency C-section as specialists suspected he was causing Michelle’s excruciating pain in the lower abdomen.
But when surgeons planned surgery thinking a cyst was behind her problems, only to find themselves in an emergency situation when they discovered a leak had stuck her intestines, ovary and fallopian tube together, they took drastic measures to save her life.
Michelle, 32, who lives in Coleford, Gloucestershire, with her carpenter Robert Tonge, 34, and their children, Emilia, 11, and Alfie, nine, said: “When I woke up I just screamed. I was hysterical.
“I had an ostomy pouch on the outside of my body to collect my waste, all that draining everywhere, and I was hooked up to a morphine drip.”
She added: “I was in total shock and petrified at what had happened.
“The doctors said they couldn’t risk not operating because the leak could have spread and quickly become life-threatening.”
Rather than find the cyst they suspected, her medical team at Gloucester Royal Hospital diagnosed Michelle with Crohn’s disease, a lifelong condition in which parts of the digestive system become inflamed.
Now more than a decade since her appendix was removed on Christmas Day 2012, when her pain still baffled doctors, Michelle wants to turn the spotlight on Crohn’s disease – which affects more than 500,000 people in the UK, according to Crohn’s and Colitis UK.
She said: “Crohn’s disease is an invisible and debilitating disease. I could smile and do my job, but be in the middle of a flare-up.
“You’ll have times when the pain is so bad you can’t even move, and you just feel nauseous and dizzy.”
Michelle recalls being “the epitome of health” until she experienced excruciating shooting pains in her lower abdomen when 28 weeks pregnant with Alfie, which resulted in her appendectomy on December 25, 2012.
But her pain persisted both before and after Alfie’s birth on February 26, 2013, resulting in her scheduled surgery to remove a suspected cyst a few months later in June.
After the routine surgery she planned turned into a four-hour emergency procedure to save her life, even though she had an ostomy pouch and one less ovary and fallopian tube, she was relieved that the diagnosis had finally been made.
Before that, when her pain continued after Alfie was born, she was afraid they wouldn’t bond because her hospital stays became so frequent.
She said: “No one had any idea why I was in so much pain.
“It felt like someone was wrapping an elastic band around my gut.
“I screamed and cried every day in pain, I was sick, I was dizzy and I felt sick.
“It was a vicious circle for six months.”
Constantly at the hospital, testing her stools, blood and getting scans, doctors eventually concluded that a troublesome cyst on her right ovary could be the cause.
She said: “When the doctors told me it could be a cyst, it felt like a saving grace. I had ultrasounds, CT scans and MRIs all the time with no positive news.
“But this news about keyhole surgery to remove a cyst seemed great.”
She added: “I had to sign paperwork covering the worst case scenarios.
“My mom wanted to come to the hospital but I told her not to worry as I would be on and off in an hour because I thought it would be easy.”
While waking up with an ostomy was far from easy, Michelle soon learned to change her eating habits to a “regular food” diet and avoid anything that could cause flare-ups.
She said: “It took me two years to check what I was eating to figure out how to prevent flare-ups. But life was back to normal.”
However, living with an ostomy was very difficult while raising two young children, so in June 2014 she had the surgery reversed.
She joked: “It was like potty training three people.
“My bag was constantly leaking. I couldn’t go to the store alone in case it leaked and I had to go to the bathroom.”
But Michelle has now adjusted to living with Crohn’s disease, which she says doctors believe was caused by her pregnancy, and she’s never felt happier.
She said: “Before my diagnosis I was so concerned that I wouldn’t bond with Alfie like I did with my daughter, but my bond with him is absolutely amazing.
“Emilia has been great through it all and had to grow up very quickly.”
She added: “She knows if I have a stomachache and she will always get me a hot water bottle.
“Life is very different from all those years ago, I never thought I would be here.
“I thought that pain would never end and now life is great.”
And in March 2020, a week before the first Coronavirus lockdowns, Michelle even opened her own cafe, Bicky’s, in Coleford, the lifelong dream of she and her 60-year-old mother Kim Bick.
She said: “It’s not bad for someone with Crohn’s disease and I’m extremely proud.
“It is undeniably unbelievable that I was able to start my own business. This seemed totally impossible 10 years ago.
“To process everything we’ve been through and to have two healthy children, to own my business and work with my mother is an amazing feeling and a dream come true.”
Now Michelle, who still has to go to the bathroom 10 times a day due to her condition, has adapted to living with Crohn’s disease. more than 10,000 closed disabled toilets.
She said: “I’ve been embarrassed for years that I need to use the toilet so often, but recently I’ve started to open up because it’s so important.
“I want people to stop being afraid to speak out because there are so many people who are going through this too.”
She added: “I used to be ashamed of using a radar key because people would say I don’t look handicapped. But you don’t have to be ashamed of it.
“Everyone poops, so let’s talk about it.”
You can learn more about Crohn’s disease at www.crohnsandcolitis.org.uk