It all started when I was 12 years old. After months in severe pain and time in hospital I was diagnosed with Crohns disease. Crohns disease is a type of inflammatory bowel disease (IBD) that can affect any part of the digestive system, unfortunately for me it affected my colon (large bowel). I was then sent home with a number of medications including steroids( prednisone) which I ended up taking throughout my journey with Crohns. One of the more visible effects of long term use of high dosages of prednisone is swelling in the cheeks and in the neck. This might also be called ‘moon face’.
This was my ‘moon face’ transformation.
I became unwell quickly after and I was fed through an NG tube to try and give my digestive system a rest. I was fed through a tube for six weeks which meant that I wasn’t allowed to eat or drink for that time. I was never hungry but missed tasting certain foods (pizza mostly). During those six weeks I didn’t want to leave the house, and when I did I would come home crying because I felt like others were looking at me.
I then took the tube out on my 13th Birthday and shortly after that I fell unwell again, I was rushed into hospital where decided to have an infusion called Infliximab. It stopped the symptoms pretty much straight away and I was pain free for a total of 3 months before my body decided to reject it. After trying out all the possible procedures and medication I came to realise that I was really never going to get better. My last hope was to self inject Adalimumab. Just weeks later I was rushed into hospital where the doctor told me that if I hadn’t come in that day then I probably wouldn’t have made it through the night. I was immediately put on drips and TPN through a chest port and was kept in for a further four months where I was being told that I was having an ostomy.
I don’t think anything in the world could prepare you to undergo such a big operation at the age of 13. But I went ahead with it because this was my last hope in having a ‘normal’ life again. After having a ‘temporary’ ostomy I was still suffering. Years went by and I was still in and out of hospital. It wasn’t until two years ago where I finally decided to make my ‘temporary’ ostomy a permanent one. At the age of 18, I was finally pain free.
Although having an ostomy improved my quality of life, I wasn’t aware of the emotional distress that came with it. It is the hardest transition that anyone has to go through physically and mentally. From a day to day basis I was reminded that I wasn’t ‘normal’ or even ‘good enough’. However, I was also reminded of how strong and brave I was to go back to school and socialise. It was only until recently where I really started to accept myself. In my opinion being chronically sick has been the greatest blessing in disguise. When you’re sick you learn to tolerate the physical pain, you have to. But it’s the overwhelming emotional distress that makes you feel like someone holding your head under water. It’s so hard not to feel anxious and depressed.
Being sick made me who I am today. I may be biased, but I think that sick people, especially young sick people are some of the most amazing and inspirational individuals you may meet. When you’re Sick you understand things that others don’t. You don’t take things for granted or dwell on things. Being sick makes you weak, being sick gives you insight and knowledge on life as it eats away at your own. It’s so much more than having an ostomy or an illness. It’s having your life out of your control and fighting to get it back.
Photo credit: Matthias Erhardt