Pub manager from Dursley, Mary Clarke, speaks out about invisible illness that almost killed her and took 16 years to diagnose

Mary Clarke, now 31 and a day manager at the Rose and Crown in Nympsfield, has suffered with Crohn’s disease for almost two decades.

She was forced to combat frequent claims that she was exaggerating her pain, doctors had a repeated inability to diagnose the issue and some suggested that she was just scared of food and must adapt her diet.

Mary said: “They made me feel like it was all in my head.

“People would often say to me ‘oh no have you got a little tummy ache?’ “I just wanted someone to say to me what it was that was causing the pain and what they could do to help.

“I have found wonderful people along the way and made friends with lots of the nurses, but on the odd occasion I was just tearing my hair out."

The vast majority of Mary’s treatment was split between Gloucestershire Royal Hospital and her GP at the Orchard Medical Centre.

Crohn’s disease is very difficult to diagnose, it is an inflammatory bowel disease which can affect any part of the digestive system, particularly the gut and intestine, it mimics other conditions such as ulcerative colitis.

Mary is one of many with Crohn's disease who have shared their stories following Crohn's and Colitis Awareness Week December 1-7.

Still living in Dursley, Mary had to plan her entire day around where a bathroom would be, she would need the toilet upwards of 30 times a day.

Mary found her passion working as a riding instructor and groom at Barton End Riding School, eventually going self-employed in 2011 teaching private clients, pony clubs, and breaking in horses.

However, severe stomach problems, vomiting, diarrhoea, bleeding, weight loss, and exhaustion quickly made Mary home-bound, unable to meet with the demands of work.

“You feel like you’re the only one in the world with these issues, but there is someone out there at the beginning of their story.

“It’s a killer disease but there’s a light at the end of the tunnel,” she said.

An average day for Mary at her lowest point included the following medication: Paracetamol, Adcal D3, flouextine, sodium docusate, azathioprine, Omeprazole, folic acid, oramorph, Prednisolone, Gabapentin and Oxycontin.

The only food she could digest was largely liquid, one Christmas she could only manage soup and jelly.

The sheer amount of medication coupled with an extremely slim frame and weighing a mere seven stone plunged Mary into bouts of toxic fits and regularly passed out, she was bordering on anorexia and anaemic.

Doctors identified her pain as close to that of child-birth.

The condition caused other side effects such as severe calcium deficiency, Mary’s bones and teeth became increasingly brittle.

Initial attempts to find the cause of Mary’s pain were combatted with multiple colonoscopies, blood tests and iron tablets, these were inconclusive and the tablets led to nothing but constipation and more pain.

In February 2013, her life ground to a halt and intensive investigations began.

Multiple consultations and follow-ups ensued but brought nothing but inconclusive results, bringing unbearable frustration to Mary, who at this point just wanted to be diagnosed.

Throughout the year family and friends frequently had to rush Mary to hospital, paramedics were called to her Dursley home several times a month and then weekly, they became accustomed to the call-out.

In September 2013, doctors at Cheltenham General Hospital decided to try a camera endoscopy, Mary would have to swallow a camera the size of a finger-tip, which would send periodic data and photos of her digestive system to find what the cause of her agony was.

The camera was supposed to exit her digestive system after a couple of days, it met a blockage within 20 minutes and became stuck, it did not re-emerge for six weeks.

It took 20 enemas in six hours to remove the camera.

Doctors finally considered that the cause may be Crohn’s disease but they couldn’t confirm.

After analysing the data from the camera doctors discovered it had become stuck at the top of the small intestine which seemed to show inflammation, this led to the first mention that it could in fact be Crohn’s.

Mary’s toxic fits led to hallucinations and eventually after one bout in April 2014, she begged the doctors in Gloucestershire Royal Hospital (GRH) to operate on her to find what was happening.

She was asked ‘are you sure you want a big scar down your tummy?’ and ‘we can operate, but you should mentally prepare yourself that you may not come out of this operation.’

Mary proceeded and over May bank holiday an intense procedure began, surgeons found six restrictions within her digestive system caused by polyps and scar tissue, they removed 25cm of Mary’s small intestine as well as her appendix which was about to burst from intense pressure.

Her mother, Sandra, claims the first comments Mary said upon waking from surgery was ‘I was right mum!’, ‘all I want now is a McDonalds’ and ‘how is my horse?’.

Her horse, Touch, a 13-year-old Warm-Blood-Irish-Draught cross was her inspiration, and kept her going through her darkest days.

The operation left her with a six-inch scar on her stomach, but with the help of partner Joe, she found the confidence this year to wear a bikini.

She is still subject to flare-ups and has blood tests every three months and check-ups at the GRH gastroenterology department, but is now able to recognise the symptoms and has adapted her lifestyle and food types, however Crohn’s disease will never go away.

Sandra said: “Mary wanted to reach out to other Crohn’s sufferers to say ‘hang in there’.

“There was a point where Mary thought she was losing the fight, but she persisted in her search for an explanation, and would urge others to do the same.”

Mary said: “Nothing stays the same forever, it’s about finding a different normality and acceptance.”

“Don’t be afraid to ask questions, don’t hide behind what other people say.

“If it wasn’t for the people at Orchard Medical and the surgeons at GRH then I wouldn’t be here today, they gave me my life back.”

Mary would like to thank the following:

Orchard Medical Centre, Gloucester Royal Hospital’s Gastroenterology department, A&E, paramedics, doctors and nurses. Her sister Victoria, dad Peter, mum Sandra, and very supportive partner Joe Taylor, Castlegate Dental Practice, all at the Railway Inn and everyone at Wisloe Farm. Her work colleagues, the many friends and family who lent their support, well-wishers from the horse world, Pearce and Sharon Moss, Ryan Woodward, and her horse Touch who was ‘my anchor when I was all out at sea. Andy Starling and all at the Rose and Crown for a new opportunity.