Hear my voice | “I believe that because I was 16 I was the ‘test dummy’”

At the age of 15 I began to get very ill: I had pain in my stomach every day and night, was always tired. I also lost 23kg (3.6 stone) in four months.

As my symptoms began to worsen, I went to my local GP. Luckily I was seen within a week and was treated like an adult, unlike in the YEAH! report which found that only “55 people (out of 414) reflected positively on their experience”.

I was sent for a blood test and waited for my results. My results were continuously wrong, lost or sent to the wrong hospital so it took a long time to get any answers, all while I was still losing weight and missing school. I finally received some results that showed I was anaemic and had a high amount of inflammation in my body but was told that it “was probably nothing to worry about”.

Hearing the GP say I was just exaggerating my symptoms made me feel like the 128 participants in the report that felt they “were not seen as a priority”.

After at least five blood tests (and another GP), I was told that I could have Crohn’s disease: a long-term condition that causes inflammation of the lining of the digestive system.

I was sent away with a few tablets but given any information about the disease. I was not given any aftercare as some other participants felt.

The whole time this was going on, my teachers at school were becoming more and more concerned. I was called in by the pastoral manager and asked how I felt. She then asked me if I was anorexic or taking laxatives and explained that a few of my teachers had expressed their worries. This made me feel very degraded and embarrassed as what was happening to me had nothing to do with anything that I was doing to myself.

After being in America for six weeks (and losing another stone), I was taken to A&E. The doctor there immediately booked me into the hospital and put me on an IV drip to give me some energy.

I was hospitalised for five days before I discharged myself and decided to go to private healthcare. While I was at that hospital, some of the nurses treated me like a baby – and wasn’t the only patient to say so – and being surrounded by babies the whole time didn’t help to get any sleep either. I definitely agree that there should be a 15-19 year old ward, which would allow the patients to “feel more comfortable placed in services among their peers” as suggested in the YEAH! Report.

As I couldn’t eat anything, the nurses decided that I shouldn’t eat at all. They would either say they were going to bring me food or water and then not, or they wouldn’t bring me anything – this is why I had to leave. I was not going to get better by lying in bed and starving.

At the private hospital, I was given an endoscopy and colonoscopy. When that was done I was told I did have Crohn’s disease and was very close to being in a coma as my internal organs were beginning to shut down.

From that day I wasn’t allowed to eat anything for eight weeks apart from specially formulated milkshakes nine times a day.

Follow-on care from the first hospital was non-existent. I never heard from them again – as another participant in the YEAH! Report found “they tend not to follow up on issues”. However the private hospital gave me loads of information on my disease and told me about some help groups set up for other teenagers with the disease.

As I began to feel better, I was prescribed iron infusions to bring the iron levels in my blood to a healthy level. This was back at the first hospital in a different ward.

At one appointment, the trainee nurse didn’t put the needle in my vein properly so the iron was left to diffuse into my muscles, even after I had told her it felt wrong. She didn’t believe me and said that I was being too sensitive.

A few days later my arm was very sore and swollen so my mother and I went back to the ward. They told me I had a terrible infection and had to stay overnight. I believe that because I was 16 I was the ‘test dummy’. I was lying in a bed and had seven nurses around me asking me loads of questions and trying to find a vein to give me antibiotics. When one nurse couldn’t, another would try until they did, however in the process they hit a nerve and I now have very weak and sore wrists.

I am currently involved with a London hospital where they give me great care. They treat me like an adult and respect what I say. I am on a medicine that is given to me by infusion and it has put me in remission – I have no symptoms and can live a normal healthy life.

Although Crohn’s is a life-long condition with no cure, I believe that my determination and knowledge will allow me to continue to live life as full of adventure as I can!