Ive Got Guts

We first came into contact with Aimee through our 'Cost of Crohn's' workshop, part of our PPI programme. Unfortunately due to a Crohn's flare-up Aimee couldn't make the workshop, but she continued to engage with our work and is a great advocate on creating awareness on bowel conditions.

Aimee's story:

Aimee Farries was diagnosed with ulcerative colitis when she was 17 years old.

Now 44, the mum-of-two has since been hospitalised three times with major flare-ups of the incurable gut condition which results in inflammation and ulcers of the colon and rectum.

She has also seen an interminable number of doctors, tried dozens of different drugs and has been periodically depressed and housebound for months on end.

Whilst she is thankful to have had long periods in remission, the spectre of UC haunts her and her family constantly.

“In a way, UC cancels out everything. Our lives are often on hold because of the pain, the tiredness, the hideousness of my body, the vain attempts to explain to people, an excessive need for the toilet.  I know it could be worse, but for me it’s bad enough,” she said.

The first signs that something wasn’t right emerged when Aimee was a teenager: she experienced bleeding, bloating and loss of bowel control.

“I remember going to Ibiza when I was 18 with a few girlfriends and messing myself at the airport. It was my first major accident,” said Aimee.

The words Ulcerative Colitis were mentioned but there was no internet in those days so I just went along with it, seeing lots of doctors and learning to cope.

The first time she was hospitalised for a whole week was at the age of 20. Aimee had just started a new job and went for a check-up.

“I was in such a state that they kept me in. I had no bowel control, a swollen stomach, and was always in pain. I was put on intravenous steroids,” she recalled.

Even when in remission, the spectre of UV remains looming

In time, her condition became manageable. Aimee remained on permanent medication and the symptoms – pain, diarrhoea, weight loss, fever and anaemia – all became part of everyday life.

The next time she ended up in hospital was when Aimee was 26 and pregnant with her son Tom, now 18.

“I nearly lost Tom several times during that pregnancy and remained pretty much in hospital for most of the nine months.  At around 19 weeks I contracted chickenpox. I was also on steroids because of my UC. I ended up in an isolation ward on a drip because doctors were worried about the combination of steroids and chickenpox.

“By the time I was six months’ pregnant I had such severe blood loss that I was really weak. I was in a wheelchair and had several blood transfusions.

“Thankfully, my son was totally fine, but afterwards I suffered greatly with depression.”

Three years later, Aimee thought she was in remission again and became pregnant with her daughter Elizabeth.  But this time, the birth was traumatic. Elizabeth was induced two weeks early and spent the first few weeks of her life in a special care baby unit.

“I couldn’t hold her and they said she could be severely brain-damaged or die. It was a major shock for my body to deal with and when Elizabeth eventually came home, my body just gave up.

“I had no bowel control whatsoever. I was wearing nappies. I was weak, depressed and couldn’t cope. My body was wrecked.”

Aimee was admitted to hospital for a week for the third time.

“I felt a total failure – as a wife, mother, daughter, friend. I came out of hospital and basically went mad.

“I was diagnosed with severe depression and had yet more medication – anti-depressants, steroids, all sorts.

“The side-effects of one of the drugs made me grow a beard and moustache – not attractive! I was hugely overweight (which is impressive for someone with UC) and life was terrible.

“My four-year-old son was like a carer to me – which wasn’t fair when he was so little.”

Whilst her own health seemed to be entering an ever-downward spiral, Aimee’s father was ill and her husband David ended up in hospital after rupturing his kidneys. 

Nevertheless, she did - gradually - get better. By 2004 (when her daughter was a year old), Aimee was again in full remission.

“It was fantastic. For six years I had no medication, no symptoms – nothing. I had energy. We went out. I went on a diet and joined a gym and we were able to have holidays. I could eat and drink whatever I wanted. Things were normal.”

She had learned, however, that another flare-up was always possible, especially at times of stress

So it was no great surprise that when David lost his job in 2008 and was out of work for 14 months, she spent another six months on steroids

“That was kind of it for me. My body shut down - no bowel control, I couldn’t stop the bleeding, lost a lot of weight and couldn’t leave the house.

“We’d booked all these amazing trips and just wanted to party but everything stopped because of me. I was on a lot of medication, depressed, bloated, fat, tired and just horrible to be around.

“We were due to go away last Easter – a safari in South Africa – but that had to be cancelled because I was too ill to travel. I couldn’t even pop out to drop my children off at school so a trip around the world wasn’t going to work.

“We had tickets to Ascot which I loved. But nope – we had to cancel. It sounds silly, but it was terrible.

“I was housebound – with our lives on hold again. I was devastated. We all were.”

Last year, Aimee began a new course of treatment – Vedolizumab infusions every eight weeks. She reckons the drug is working and is optimistic that she will be in remission again soon.

She has also set up her own marketing business and works from home.

UC is a scary disease. I never know when it will strike and I want to live as much as I can before it comes back for me.

“I know at some point I’ll need a colostomy and I’ll deal with that when I have to. I take it a day at a time.

“I’m really lucky I’ve had such long periods of remission and I have two beautiful, amazing children and an amazing husband.”