'I had to go to the toilet 20 times a day' due to bowel disease

When Lauren Rooney's toilet troubles first began and she started bleeding during bowel movements while 10 weeks’ pregnant with her first child, she wasn’t too worried.

"I thought it was one of those weird pregnancy symptoms like piles and so I didn’t bother mentioning it to my midwife or GP," says Rooney, 32, a retail manager from Preston, Lancashire.

"Even though I had diarrhoea as well, I thought it was all down to being pregnant and decided that if it continued after the baby was born, I’d get an appointment with my GP. But it stopped at around 24 weeks and I was fine up to the birth of my daughter Frankie, who is now nearly four."

Ten months later though, Rooney started having symptoms again and alarm bells began to ring. She visited her GP who agreed she should have tests but her symptoms began to subside and a colonoscopy (where a tube with a camera is inserted into the colon) later that year put her mind at rest.

"I was pleased it wasn’t anything sinister and apart from an unpleasant four months of symptoms, it wasn’t stopping me live my life so I continued as normal," she says.

Scared to go out

But in June 2020 Rooney got pregnant again and almost immediately started suffering symptoms – this time to a debilitating extent.

"I was visiting the toilet around 20 times a day and bleeding each time," she says. "I was terrified to leave the house in case I got caught short but somehow managed to make it to work each day where they put me on desk duties, rather than being on my feet all day.

"I was completely wiped out, breathless and exhausted. I could barely lift my head. I’d come home from work and sleep but at night I’d be up going to the toilet again. Thankfully, my parents helped look after Frankie as my husband Phil, 46, was also working but I felt sick all the time and by now my family were getting worried about me.

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"I went to my GP in the August who did more tests and I got a call to say the inflammation markers in my blood were raised and other tests, such as liver and renal, also indicated a problem.

"The doctor had no idea what the problem was but she recommended I get to hospital and Phil drove me straight to A&E where I had a blood transfusion and was admitted that day."

Doctors were fascinated

It was at this point that – quite by chance – Rooney happened to mention to doctors a golf-ball sized bruise on her leg.

"It was really odd because one of the doctors remembered that this could be a classic sign of inflammatory bowel disease (IBD)," she says. "This is known as Erythema nodosum and apparently one in 10 people with IBD also have these bruises. They were all fascinated by it and were asking to take pictures.

"But they couldn’t make a diagnosis without further tests and because I was pregnant they couldn’t be too invasive so I had a partial sigmoidoscopy, where a flexible tube was inserted only some way into me and straight away we could all see the problem on screen. My colon was inflamed and ulcerated and that’s when they told me it was ulcerative colitis."

A walking zombie

Ulcerative colitis affects at least one in 227 people in the UK and while a third of people are diagnosed under 30, it can strike at any age. There is no cure and it can be hard to predict but there are many effective treatments which help to control symptoms.

"It was a relief to finally have a diagnosis and they started me on treatment with a biologic drug that helps autoimmune diseases. I had steroids orally and injected and even days into the treatment I felt so much better.

"I went from being a walking zombie into someone who felt pretty normal after just eight days. I felt very lucky because there were people of all ages on my ward who were not as lucky."

Read more: What does your poo say about you?

Rooney has since found out that there may be a genetic link as to why she has the disease. Her maternal grandmother had colitis and later bowel cancer. Rooney continued with drug treatment – even through the birth of her second baby Teddy – and has only recently completed the course.

While her digestive system seems to have improved, she is now noticing signs of inflammation in her joints – something that can affect one in five people with an IBD.

"I started noticing swelling last November and it got to the point where I couldn’t walk up stairs and even had to ask my husband to help get me dressed," she says. "The doctors discovered that I might have developed antibodies to the drug I was on before so I’m on a different one now and hoping that helps improve the symptoms."

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Staying strong

"I have quite a positive outlook but sometimes it’s hard. I’m in my early 30s and sometimes walk like an old woman, despite being so fit and healthy before the age of 30 that I don’t even think I went to a hospital.

"But I would advise anyone who suspects they have symptoms – no matter how strange – to mention them to your doctor. Don’t ignore them because there are treatments, but getting a diagnosis as quickly as possible is so important."

For more information, visit crohnsandcolitis.org.uk