Rachel's Story: Me and Crohn's disease

Rachel Gilbey

Rachel Gilbey was forced to pull out of university due to her Crohn's disease.

However she has fought back to secure a degree, and told BodyPositive how she stopped her illness from defining her.

What is Crohn's disease?

Crohn's disease is an inflammatory bowel disease (IBD) that affects the intestines. It can occur at any point from the oesophagus to the anus causing inflammation. It's a chronic illness and there is currently no cure.

When were you diagnosed?

I started noticing the symptoms in April 2011 and after various tests and treatments I was finally diagnosed in September 2011 after spending five weeks in hospital.

What were your symptoms?

My symptoms included sickness, fatigue, abdominal pain, loss of appetite, weight loss, the constant need to use the bathroom due to diarrhoea and blood loss each time I passed a stool which meant that I would faint.

As well as this, I had abnormal blood test results which indicated that I was anaemic and my inflammation markers were very high.

Did you feel embarrassed ?

Initially it was very embarrassing as I felt that I couldn't keep up with others my age. I would tire easily and spent a lot of time during the summer in a wheelchair due to not being able to walk far.

I couldn't predict when I would need the toilet and so going out for food would be problematic, especially as every time I ate I would get a cramping pain in my stomach.

As Crohn's disease doesn't always affect you physically, it was hard to describe to friends how unwell I was as they couldn't see anything wrong.

How has Crohn's affected your life?

Crohn's has affected my life in a big way. Not all in a negative way but it has certainly impacted certain areas of my life more than others.

One area which took a massive knock was my university studies. I started university in February 2012 as a student midwife but due to increasing problems with Crohn's, I could only complete my first year before I had to take some time out of the course.

I was due to return to the course to start my second year after having 10 months off, but suddenly, I lost all of my hair which was due to a side effect of a new treatment and as a result, I couldn't go back. Instead, I transferred to an event management course and three years later I have just completed my degree.

Did being diagnosed with Crohn's affect your body image?

Having Crohn's has definitely affected my body image in so many ways.

When I get really unwell, I often can't eat which means I lose weight rapidly. For some people this is a dream but with it comes fatigue and low levels of vital nutrients such as iron and calcium.

Crohn's can also have the opposite effect and I am regularly bloated after eating. I can go from looking a healthy weight to suddenly looking six months pregnant - all because of gas!

Particular medications have their own side affects too like the total hair loss I've already mentioned. Other side effects include the weakness of hair and teeth.

What would you say to someone living with Crohn's?

It took me a long time to understand my body and really listen to it. You'll find food and drink which might not agree with you but there are always alternatives.

When I lost my hair, it massively damaged my confidence, but I learnt to embrace myself and learnt that I am not defined by what I look like.

Learning to love yourself can be hard and can take time, but the sooner you do the happier you'll be.

What would you like to change for people who have been diagnosed with any Crohn's?

I would love to change the stigma attached to Crohn's or any other form of inflammatory bowel disease so that talking about it and raising awareness of it is a lot easier and more comfortable to do.

This would then hopefully take away any embarrassment that people would have about their bodies and illness and help others who don't have it to understand it more.

When you have down days how do you make yourself feel body positive?

When I have down days I try to remember how far I've come.

I like to treat myself to a bit of pampering, whether that is a relaxing bubble bath or a fresh lick of nail polish.

More recently I feel a lot happier knowing that I have eaten healthy or have taken part in an exercise class. So some fresh fruit and a run can really make me feel like I am taking care of my body.