A mum who woke from a scheduled operation to burn off a cyst to the shocking news she had a stoma bag and an ovary and fallopian tube had been removed is now celebrating personal and professional happiness free from crippling pain. For months doctors had struggled to find the cause of Michelle Tonge’s constant agony, that saw her rushed into hospital one Christmas Day with a suspected appendicitis – only for examinations of the organ after removal to show it was fine.
Then her second child was induced at 37 weeks, only to become distressed and be delivered by emergency Caesarean, as specialists suspected he was causing Michelle’s excruciating lower abdominal pain. But when surgeons scheduled an operation thinking a cyst was behind her problems, but were plunged into an emergency situation when they found a leak had stuck her bowels, ovary and fallopian tube together, they took drastic action to save her life.
Michelle, 32, who lives in Coleford, Gloucestershire, with her carpenter husband Robert Tonge, 34, and their children, Emilia, 11, and Alfie, nine, said: “When I woke up I just screamed. I was hysterical. I had a stoma bag on the outside of my body collecting my waste, all these drains everywhere and I was hooked up to a morphine drip.
“I was in in total shock and petrified about what had happened. The doctors said they couldn’t risk not operating as the leak could have spread and that could quickly have become life-threatening.”
Rather than finding the cyst they had suspected, her medical team at Gloucester Royal Hospital diagnosed Michelle with Crohn’s disease, a lifelong condition where parts of the digestive system become inflamed. Now more than a decade since 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 – which affects more than 500,000 people in the UK, according to Crohn’s and Colitis UK.
She said: “Crohn’s is an invisible and debilitating disease. I could be smiling and doing my job, but be in the middle of a flare up. You will have times where the pain is so bad you can’t even move, and you just feel sick and dizzy.”
Michelle recalls being “the picture of health” until she started experiencing unbearable shooting pains in her lower abdomen when she was 28 weeks pregnant with Alfie, resulting 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 operation she had planned turned into a four-hour emergency procedure to save her life, even though she was left with a stoma bag and had one less ovary and fallopian tube, she was relieved to have finally been diagnosed. Prior to this, when her pain persisted after Alfie was born, she feared they would not bond, as 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 twisting an elastic band around my bowel.
“I was screaming and crying in agony every single day, I was being sick, I was dizzy and felt nauseous. It was a vicious cycle for six months.”
Constantly in hospital, where her stools and blood were tested and she was given scans, eventually doctors concluded a tricky cyst on her right ovary could be behind it all.
She said: “When the doctors told me it could be a cyst, it felt like a saving grace. I was having ultrasounds, CT scans and MRIs all the time with no positive news. But this news about keyhole surgery to remove a cyst seemed great.
“I had to sign paperwork where there were worst case scenarios covered. My mum wanted to come to 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 a stoma was far from straightforward, Michelle quickly learned to change her eating habits to a “plain food” diet and to avoid anything likely to cause flare-ups. She said: “It took me two years to monitor what I was eating to figure out how to avoid flare ups. But life was a bit more back to normal.”
Living with a stoma was very difficult while raising two young children, though, so in June 2014 she had the operation reversed. She joked: “It was like potty-training three people.
“My bag was constantly leaking. I couldn’t go to the shop on my own just in case it leaked and I needed to go to the bathroom.”
But Michelle has now adjusted to life with Crohn’s, which she says doctors believe was triggered by her pregnancy and she has never felt happier.
She said: “Before my diagnosis, I was so concerned that I wouldn’t bond with Alfie in the way I did with my daughter, but my bond with him is absolutely wonderful. Emilia has been amazing through it all and had to grow up really quickly.
“She knows if I have a tummy ache and she’ll always get me a hot water bottle. Life is very different from how it was all those years ago, I never thought I’d 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 café, Bicky’s, in Coleford, which was she and her 60-year-old mum Kim Bick’s lifelong dream.
She said: “It’s not bad going for someone with Crohn’s and I feel extremely proud. It’s undeniably unbelievable that I have been able to start my own business. This seemed completely impossible 10 years ago. To come through with everything we have gone through and have two healthy children, to own my business and work with my mum is a fantastic feeling and a dream come true.”
Now Michelle, who still needs to go to the loo up to 10 times a day because of her condition, has adapted to life with Crohn’s she is keen to tackle taboos concerning bowel issues, including using radar keys – skeleton keys which give people access to more than 10,000 locked disabled toilets.
She said: “I have been quite embarrassed about needing the loo so often for many years, but recently I have started opening up because it’s so important. I want people to stop being afraid to speak out, because there are so many people who are also going through this.
“I used to be quite embarrassed about using a radar key as people would say I don’t look disabled. But you shouldn’t be made to feel ashamed about it. Everyone poos, so let’s talk about it.”
You can find out more about Crohn’s disease on www.crohnsandcolitis.org.uk
