A mother who, after routine surgery to detach a cyst, woke up to the shocking news that she had an ostomy bag fitted and a fallopian tube removed is now celebrating life free of debilitating pain.
For months, doctors had struggled to find the cause of Michelle Tonge’s constant agony, which led to her being hospitalized on Christmas Day with suspected appendicitis – only to have the organ examined after the removal to show that it was ok.
Then their second child was induced at 37 weeks, only to be distressed and given an emergency C-section as specialists suspected it was causing Michelle’s excruciating lower abdominal pain.
But when surgeons planned surgery because they thought a cyst was behind their problems but found themselves in an emergency situation when they realized a leak had blocked their intestines, ovaries and fallopian tubes, they took drastic measures to end their lives rescue.
Michelle, 32, who lives in Coleford, Gloucestershire, with her carpenter husband Robert Tonge, 34, and their children Emilia, 11, and Alfie, 9, said: “When I woke up I was just screaming. I was hysterical.
“I had an ostomy bag on the outside of my body collecting my poop, all these drains everywhere, and I was hooked up to a morphine drip.”
She added: “I was totally shocked and petrified by what had happened.
“Doctors said they couldn’t risk not operating as the leak could have spread and that could have quickly become life-threatening.”
Rather than finding the suspected cyst, her medical team at Gloucester Royal Hospital diagnosed Michelle with Crohn’s disease, a lifelong condition that causes parts of the digestive system to become inflamed.
Now, more than a decade after her appendix was removed on Christmas Day 2012 when her pain was still baffling medics, Michelle is keen to turn the spotlight on Crohn’s disease – which affects over 500,000 people in the UK, according to Crohn and Colitis UK.
She said: “Crohn’s disease is an invisible and debilitating disease. I could smile and get my work done but be in the middle of a flare-up.
“You’re going to have times when the pain is so bad you can’t even move and you just get nauseous and dizzy.”
Michelle recalls being “the picture of health” until she began experiencing excruciating shooting pains in her lower abdomen when she was 28 weeks pregnant with Alfie, leading to her appendectomy on December 25, 2012.
But her pain continued both before and after Alfie’s birth on February 26, 2013, leading to her scheduled surgery to remove a suspected cyst a few months later in June.
After the routine surgery she had planned turned into a four-hour emergency procedure to save her life, despite having a ostomy bag and an ovary and fallopian tube, she was less relieved to finally be diagnosed.
Previously, when her pain continued after giving birth to Alfie, she feared they wouldn’t connect as her hospitalizations became so frequent.
She said: “Nobody had any idea why I was in so much pain.
“It felt like someone was wrapping a rubber band around my gut.
“I was screaming and crying in pain every day, I was sick, I was dizzy and I was sick.
“It was a vicious circle for six months.”
Constantly in the hospital, where her stool and blood were examined and she was given scans, doctors eventually concluded that a troublesome cyst on her right ovary could be behind it.
She said: “When the doctors told me it could be a cyst, it felt like a saving grace. I’ve had ultrasounds, CT scans and MRIs the whole time with no positive news.
“But this news about keyhole surgery to remove a cyst seemed great.”
She added: “I had to sign papers that covered worst-case scenarios.
“My mum wanted to come to the hospital but I told her not to worry as I would be in and out in an hour thinking it would be straightforward.”
While waking up with an ostomy was far from easy, Michelle quickly learned to switch her eating habits to a “regular” diet and avoid anything that could lead to flare-ups.
She said: “It took me two years to monitor what I eat, to figure out how to avoid flare-ups. But life was a little more normal.”
However, living with an ostomy was very difficult as she was 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 by myself in case it leaked and I needed to go to the bathroom.”
But Michelle has now adjusted to life with Crohn’s disease, which she says doctors believe was triggered by her pregnancy, and she’s never felt happier.
She said: “Prior to my diagnosis, I was so concerned that I wouldn’t bond with Alfie the way I did with my daughter, but my bond with him is absolutely wonderful.
“Emilia came through it all great and had to grow up very quickly.”
She added: “She knows if I have a stomach ache 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 the 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 coffee shop, Bicky’s, in Coleford, which was the lifelong dream of her and her 60-year-old mother Kim Bick.
She said: “It’s not a bad decision to choose someone with Crohn’s disease and I’m very proud.
“It is undeniably incredible that I was able to start my own business. That seemed completely impossible 10 years ago.
“Getting through everything we’ve been through and having two healthy children, owning my business and working with my mom is an amazing feeling and a dream come true.”
Now Michelle, who still needs to go to the bathroom up to 10 times a day due to her condition, has adjusted to life with Crohn’s disease. She’s keen to tackle taboos surrounding gut issues, including using radar keys – skeletal keys that people can access more than 10,000 locked disabled toilets.
She said: “I was quite embarrassed that I had to go to the toilet so often for many years, but recently I’ve started to open up because it’s so important.
“I want people to stop being afraid to speak up because there are so many people who are going through that too.”
She added: “I used to be quite embarrassed to use a radar key as people would say I didn’t look disabled. But you shouldn’t be ashamed of that.
“Everyone poops, so let’s talk about it.”
You can find out more about Crohn’s disease at www.crohnsandcolitis.org.uk