Symptoms started suddenly while on holiday in Guernsey in July. I thought I had just eaten something dodgy as I was still feeling well just had a sudden onset of diarrhea. During the week my belly got worse and I was soon off my food and lacking energy. I did my best to hide it as I was sure that it would pass and I didn’t want to ruin the holiday.
The weeks passed and I didn’t get any better. Family were starting to get quite concerned and tried to get me to see the doctors. I was pretty worried too and tried to refuse to see them as I was scared about what they would say. The GP’s did lots of blood tests but all they were picking up was anaemia so I was put on Iron and Metronidazole. Noone could put a finger on what was going on.
I headed back to school in the September but I could barely manage. I was entering year 9 and my form room was on the 3rd floor and I struggled to climb the stairs without getting faint and vomiting. The urgency of the Diarrhea was increasing and any exertion made me sick. I was finally referred to my local hospital to see the paediatrician. She again ran lots of tests but she also wanted to examine my belly but it was so tender I refused point blank. After another few weeks of endless blood tests I was admitted to Bart’s Hospital in London. As soon as I arrived treatment started with Blood transfusions, fluids, antibiotics and more blood tests. The Team said they hadn’t seen anyone so poorly for quite a while. The next day I had a colonoscopy which diagnosed Crohn’s Disease. I was so poorly I spent the most of the first 2 weeks just sleeping so I don’t remember that much but I do remember that it was a relief to have a diagnosis and that I wasn’t going to die……. But Crohn’s what is it? I’ve never heard of it!.....
I spent 6.5 weeks in Bart’s Hospital having blood transfusions, various xrays, TPN nutrition and starting on long term steroids and anti inflammatories. I would have been home sooner had I not caught 2 infections and been diagnosed with a large DVT (Deep Vein Thrombosis) behind my knee But it was good to be home in time for Christmas with my family.
I was on high dose steroids which changed my appearance dramatically. I had meetings with the school and slowly started to attend my favourite subjects such as music and art, I then progressed and re started Maths and English. My time at school slowly increased over the next couple of years and with the help of a tutor I passed my GCSE’s.
It took 3 years to get my IBD into remission and during that time my diagnosis changed to Indeterminate Colitis.
While I was in hospital I decided that I wanted to work with children. So after my GCSE’s I left school and went to college.
The hardest part was the nursery placements trying to get staff to understand that I wasn’t contagious but I might need to dash to the loo in a hurry
Since then I have had flares and time off Uni and Work. It is hard to help peers, teachers, and employers to understand IBD but not being afraid or ashamed to sit and talk about it. To use publications from CiCRA and CCUK to help and to be honest. It’s surprising how many people will want to understand, learn more or even have IBD themselves. I’ve also had many years of remission with the disease controlled with Anti Inflammatories, Immunosuppressants, steroids and latterly Biologics which has given me the boost to achieve some of my goals.
In 2007 I was diagnosed with Type 1 diabetes. I thought well just another challenge but it wasn’t quite that easy. The worries and confusion over what caused it and if there is a link with IBD. How will they affect each other too especially with Steroid treatment. My Diabetes nurse was fantastic at helping me through and on call if I needed her.
I am fortunate that they haven’t clashed very often. I have to be extra watchful diabetes wise when on Steroids and be in constant contact with my Diabetes nurse. It has however been affected by recent surgery and a dramatic change of diet…. Symptoms of both can get confused with Light-headedness, fatigue and weight-loss so can be a challenge to decide what is causing what.
In 2017 I had a Panproctocolectomy leaving me with an permanent Ileostomy. It was a massive decision to make and a very hard one too.
I decided to go ahead with it I have friends with Ileostomies and I could see how much better life was for them. My symptoms had been increasing for over a year and we just couldn’t get them back into remission. 4 months later due to adhesions I developed a small bowel obstruction which disappointingly needed further surgery and a huge adaption to my diet.
But…. I’ve not let these challenges defeat me and with the support of friends, family and my specialist teams I have been able to achieve so much more than I ever thought possible. To be strong knowing that its okay to be vulnerable and to be stubborn in reaching my goals but knowing my boundaries. I’ve gained a degree (and flared). I’ve travelled to Australia and New Zealand and now I own and run my own business (all set up while flaring and keeping it afloat during surgery) and in my spare time I spend it raising awareness of IBD, supporting other patients through blogging and being part of a Hospital Patient Panel and raising money for CICRA and CCUK.
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