Crohn’s is such a cruel disease but there is hope
To mark Crohn’s and Colitis Awareness Month ELIZABETH ARCHER meets one young patient who opens up about her experience of living with the debilitating condition
ASWARDS and intensive care units cleared for coronavirus patients, Bethany Jacobs was anxiously awaiting surgery to remove her colon after years of suffering with Crohn’s disease. Her treatment was due to take place at London’s St Thomas’ Hospital and hers was one of the last planned operations to go ahead before all nonemergency surgeries were cancelled.
But having waited four years for the operation, she was determined to go ahead. “It was a scary time,” says Bethany, 29.
“Inside the hospital there was lots of talk about coronavirus and there were people on our ward in side rooms who’d tested positive.
“The aim was to get me into surgery and then out of the hospital as soon as possible.”
Thankfully, the operation was a success and the graduate paralegal was discharged after nine days.
Now, a month later, Bethany, from Bexleyheath in London, is recovering well and she wants to tell her story to raise awareness of Crohn’s – a condition which she says is often misunderstood.
“People don’t realise the things you go through with Crohn’s,” she says. “I’ve been in and out of hospital more times than most people will be in their entire lives.”
Bethany was just 22 when she started to notice she was going to the toilet more than usual. Common symptoms of the disease include diarrhoea, abdominal cramps and fatigue, according to Crohn’s and Colitis UK.
“I was on holiday with friends on a big trip to America and I was going to the toilet all the time, but I thought it was just down to us going out too much” she says.
Back home, her symptoms worsened.
“I mentioned it to my mum and dad and they were really concerned.”
Bethany’s parents urged her to see her GP. Her father’s family has a history of bowel disease – one aunt has Crohn’s disease and her grandfather had colitis.
She was diagnosed with ulcerative colitis and prescribed a dose of anti-inflammatory mesalazine.The condition causes
inflammation and ulcers to form in the lining of the colon, causing pain.
If the ulcers become infected, it can cause complications such as sepsis.
For a year after she began taking the medication, Bethany had no symptoms. “I thought I was cured,” she says.
Then in 2015, her illness began to return and she was going to the toilet 20 times a day. “I was exhausted because I wasn’t getting any nutrition from the food I was eating,” says Bethany who was working as a paralegal and studying at university.
At 25, her social life was suffering too. “I planned so many trips I had to cancel.”
She was scared to eat in case it worsened and dropped down to just six stone.
Later that year, Bethany was admitted to Lewisham Hospital for a course of IV steroids to reduce the inflammation in her bowel and ease her symptoms but it didn’t work .After trying every possible drug, doctors said the only option was to remove her colon – but Bethany was reluctant. She was discharged and saw a consultant every week. Then in March 2016, she reached breaking point. “I couldn’t take it any more,” she says.
She agreed to have the first part of her colon removed at St Thomas’ Hospital.
After surgery, Bethany felt better than she had in years. “The surgeon told me I’d feel back to normal and he was right. It was the best thing that’s ever happened to me.”
She gained weight and was able to return to a more normal life. “Not to have to worry about where the nearest toilet is was amazing,” she says.
“I love going out to new restaurants and trying different foods, so it was great being able to do that again.” However, 18 months after the surgery, she developed a high fever. A trip to A&E and an MRI confirmed she had an abscess in the lower part of her colon and life-threatening sepsis. They drained the abscess and she was in critical care for 10 days on IV antibiotics.
Bethany’s diagnosis was changed from ulcerative colitis to Crohn’s disease and she was advised to have the lower part of her colon removed, leaving her with a colostomy bag. “It’s never an easy decision to have a major surgery and I wanted to avoid if I could,” she says.
THE ABSCESS left her with ongoing problems that required a further 10 different surgeries and, finally, Bethany agreed to have the second part of her colon removed.
The operation went ahead on March 13 and she is now recovering at home. “I put the surgery off for the last four years but I wish I’d done it sooner,” she admits.
Now she wants to reassure others suffering with the disease that they’re not alone.
“Until recently, I don’t think anyone but the people closest to me understood how close I came to losing my life.
“This disease doesn’t let up. It’s so cruel. But there is hope.
“And now after the operation, I have a chance at a fresh start.”
May is Crohn’s and Colitis Awareness Month. For more information, visit crohnsandcolitis.org.uk