Guest Writer Helen

I was diagnosed with Crohn's disease when I was 16 years old after developing severe stomach cramps and fatigue. I was very quickly offered surgery to remove the affected part of my bowel. I dropped out of college a year early as my absences were mounting up and my tutor could not understand my illness, as to her I was not visibly ill. The operation was a miracle. I soon slipped straight back into my teenage life with no consideration to what I had just been diagnosed with. 

For the next three years I turned a blind eye to my condition as the operation had left me symptom free. I began volunteering at a special needs school and soon developed my passion for working with people with learning disabilities. I began my training at Northumbria University as a Learning Disability Nurse in 2010 and everything began to fit into place. 

In September 2012 I began slowly losing weight. I love to go to the gym and be as active as I can, so I put my weight loss down to this. Over the next two month I started to develop other Crohn’s related symptoms however I put these off and tried to make other excuses for it. I knew there was a possibility my Crohn’s had returned however I thought that if I didn’t face it then things would somehow sort themselves out. Unfortunately this was not the case.

In March 2013 I came home from University extremely unwell hoping to get a quick answer from my doctor. By this time I had lost 2 stone, I was unable to get out of bed, my appetite was nonexistent, I wasn't sleeping due to horrendous stomach cramps and I had developed an anal fissure that left me in excruciating pain every time I went to the toilet (which was a lot.)

I went to see my GP and he referred me to an IBD consultant. Due to me being so unwell the consultant didn’t want to do any investigations until I had picked up. I was put on to steroids, vital milkshakes, a no fibre diet and a combination of vitamin boosting drugs.

For the next month I was very unwell, I seemed to get worse before I started to feel better. This left me feeling very down in the dumps. I’d left my university life that I loved! I’d moved away from my friends and my boyfriend and to top it all off I missed starting my final placement as a student nurse.  I was missing out on so much at university. It was a very difficult time for me, my weight had dropped to 7 stone, and none of my clothes fit me anymore. I felt so insecure.

My friends and boyfriend had never seen me suffer from my Crohn’s before so didn’t understand what was going on. I was getting constant texts and messages asking when I was coming back, which I was unable to give an answer to. It was difficult to explain to people I will be better when I’m better, I didn’t know when it would be or how long it would take but being bugged daily by everyone wasn’t helping. My relationships with my friends and boyfriend were going downhill and I was becoming more and more fed up of being ill. (I’m a rubbish patient.)  

After a month of steroids the consultant decided my symptoms had settled enough for him to do tests. For the next couple of weeks I underwent surgery to remove an abscess I had developed, I was poked, prodded and scanned until it was apparent my Crohn's disease had returned "all guns blazing."

Following my results I was put straight on to Azathioprine tablets daily and Infliximab infusions every couple of weeks.

The infusions seemed too good to be true, my stomach cramps were a lot better. It was still a couple of weeks before I started to feel slightly ‘normal’ again. 

On the 3^rd of May 2013 I moved back up to Newcastle. University and my Placement were very understanding. I was able to start my placement, just doing short shifts to get me back into a routine. I received financial support from University as initially I was travelling backwards and forwards between home and Newcastle to have my weekly blood tests and other treatments.
My first week back in Newcastle was terrible, I missed home so much. I cried my eyes out leaving my mum; she had been amazing, looking after me. She made sure I took my tablets, made my meals for me, took me to all my appointments and most importantly she understood! It was so hard remembering to take my tablets every day and having to explain to people why I couldn’t eat certain foods and why I had been so poorly. I just felt like no one understood.

 

Four months down the line I’m still learning about my Crohn’s, there’s so much to remember and come to terms with. I’ve learnt that if you don’t let people in and help them understand about Crohn’s disease then it’s a lonely road. Life is so much easier now my boyfriend, friends and colleagues have an insight to my illness.

My treatments have been amazing so far, I am back on a normal diet and not suffering from any symptoms. The only thing I struggle with is tiredness. I seem to be forever tired. I put this down to my determination to live a “normal” life. I do 13 hour shifts; go to the gym 4 times a week and I am as active as I can be. My friends understand that some days I just need to chill out and my boyfriend has come to terms with the fact it’s very unlikely I will watch a film without falling asleep half way through. It does worry me at times what the future may hold for my Crohn’s Disease, but I am confident that whatever comes my way I have the support of my family, boyfriend and friends to deal with it. I am determined that Crohn’s will not stop me living my life and following my dreams.