Robyn’s Story

HELLO! I’m Robyn and I was born in 2000. Apart from some treatment for jaundice at birth I was a healthy and happy 7lb baby…

Robyn 2Growing up I was full of energy. I loved singing, acting dancing and anything to do with the performing arts! I went to Stagecoach for most of my childhood and knew I wanted to pursue this as a career. I did suffer from mild constipation every now and again but we thought that might have been due to my diet. Looking back, my mum and I both realised that I displayed signs of Crohn’s Disease during my childhood, although we are not sure when it developed in my body.

After I came back from Egypt in 2012 everything kicked off.  I started to suffer from frequent diarrhoea and the smell changed as well. My puberty growth seemed to stop – I used to be tall for my age and now I had fallen below the height of most of my friends.

Not realising these were symptoms of Crohn’s disease I carried on with my life as usual, going to school every day with 100% attendance (with frequent visits to the toilet!). At the beginning of 2013 I started to get belly once or twice a week but being a teenager I didn’t think it was too much of a problem and didn’t take any notice. As time progressed throughout 2013 my belly aches increased and by the end of the year they were occurring 5-10 times a day. I realised something was wrong and finally decided to tell my mum! We booked an appointment with my doctor.

My doctor told me I was suffering from Irritable Bowel Syndrome and advised me to keep a food diary to try and pin-point what my tummy wasn’t agreeing with. We went away and did this for 4-8 weeks but still couldn’t find a food type to blame. Sometimes I would get pain after food and sometimes randomly or even when I hadn’t eaten.

A couple of months later, I was still suffering and trying to cope with my painful symptoms, so we went back to the doctor. They told me they thought it was a condition called celiac (wheat intolerant) and yet again told us to make a food diary and cut out wheat for a while to see if it made a difference. Wheat wasn’t the issue and in fact during this time I became more ill than before. I became weak, tired, pale, bloated, underweight, undernourished and suffered from joint pains and some minor rashes between my joints in my arms as well as the terrible abdominal pain. I was very sick. I had to go for a poo at least 6 times a day. A couple of days later, I went to the toilet and realised I had blood in my poo as well. This was when I started to panic. I remember I cried to my mum that night and asked her if I was going to be okay and she gave me a big hug and told me everything would be fine. Unfortunately the blood kept on appearing, becoming more and more each day, sometimes with mucus. BACK TO THE GP! My mum demanded that I go to the hospital and my Doctor referred me.

At the hospital we saw Dr Heath who was super nice and asked me and my mum a few questions. Once I had answered them all, she took one look at my belly, body and my face and said to us, “I am 90% sure you are suffering from a condition called Crohns disease.” Me and my mum had never heard of this before and were absolutely clueless! Dr Heath explained briefly what it was and referred me straight away to the pediatric gastro team at Chelsea and Westminster Hospital.

When I got there, a few doctors looked at my belly and I had to answer lots of questions AGAIN! They took blood tests and I had to do a stool sample. I went back the following week and they told me that something wasn’t quite right in my blood and my stool. They said they thought I was suffering from IBD, but couldn’t tell if it was Crohns disease or UC. I was informed that I had to have an endoscopy and colonoscopy to find out. I was so scared and that night cried to my mum again. I was quite upset with all of this new news crashing down at me all in one go. I didn’t expect it. I thought I had been healthy my whole life! Leading up to my first ever procedure, I became more and more scared, but to my surprise, it was no way near as bad as I thought it was going to be! I didn’t remember a thing! I was diagnosed with Crohns disease in the middle of October 2014.

Robyn 1Straight after I was diagnosed I had to stay in hospital for a week because the Doctors were putting me onto a protein shake called Modulen, this hopefully was to help me absorb all the nutrients I had not been absorbing for the last… however long! This would also help me to gain weight so that I was a healthy weight (instead of being drastically underweight). I could not eat food or drink (other than water) for 8 weeks. I had to go to the hospital every Friday to get my blood test taken and give a stool sample. The Modulen did help, I put on half a stone – I had gained weight!

I was feeling great; more alive, healthy and back to my energetic self! I thought Crohns had gone away for a while. However once I had been off Modulen for just over a week the pains started to come back and so did the blood. We called up my specialist nurse and she booked us an appointment with my Doctor. That day we decided to put me onto a medicine called Azathrioprine, iron and Vitamin D supplements for a short course. I was taking 9 tablets a day for roughly 2 months. I was taken off the supplements and just stayed on my Crohns medicine (Azathrioprine) for quite a while. However my blood tests were not showing many improvements and nor were my stool samples.

I had a repeat endoscopy and colonoscopy in June 2015. My large intestine had got much worse and my smaller intestine had hardly improved at all. My doctor then gave me the choice of taking either Infliximab and infusion or to have surgery which would take Crohns away for a period of time. My parents and I had to weigh up the pros and cons and finally came to a decision. The doctors agreed and we all thought it was best to try the new drug first before jumping to surgery. So that’s what I decided to do.

Currently, I have just taken my 2nd dose of Infliximab, whilst still taking my usual Azathrioprine daily. It is going well so far; I don’t seem to have any side effects and I look and feel a lot better than I did half a year ago! The nurses are so nice and funny and I enjoy meeting new people in the hospital whilst I’m in. Crohns has definitely not stopped me from doing anything I want to do. I know I can do whatever I set myself to, as long as I work hard for it. Although I have to say no to my friends sometimes when they ask me to meet due to tiredness, Crohns – in my opinion – has made me a stronger person and has not stopped me doing what I love! I still sing, act and dance and I attend a famous performing arts school! I am still determined to become what I have always wanted to be and I’m happy!

Just remember, you control the Crohns, it doesn’t control you

Thank you for reading and letting me share my story.

This was written in October 2015 – for ongoing news please check our Twitter feeds or Facebook page.