About this post:
For those of you who know me either through work or play, you may be aware that my son is unwell. It’s often difficult to explain what the problem is so with the help of my son, we wrote his story. I know this isn’t the usual technobabble but I hope you excuse the indulgence. Sometimes its good to talk – after all this blog is about my thoughts and considering this occupies a great deal of them, it seems only fair that after many years of blogging you can forgive me for going off-topic.
My name is Sammy. I live in London with my twin brother Joshy, my sister Emily and my mummy and daddy. Here is my story.
I look like any other child on the outside, but on the inside I have a vey funny tummy. It is not like anyone else’s you probably know. My tummy doesn’t like food. It’s not that I don’t like food. In fact I love food. I used to eat pizza, chips, hot dogs and other stuff. Although, when I ate those foods I got sick. I was in so much pain I couldn’t do anything, and I didn’t want to anyway. I was sick a lot and I used to bleed whenever I went to the toilet. I cried a lot of the time and wouldn’t leave my mummy’s side.
When I first met my doctor at Great Ormond Street Hospital he did a test to find out what was going on. He put a mask on my face and after I fell asleep, he looked inside my tummy through a tube. My tummy was a mess! He told my mummy that it was inflamed, ulcerated and bleeding throughout, from my throat to my bottom. He told us that I had a disorder called eosinophilic gastrointestinal disorder. He explained that this was a rare form of inflammatory bowel disease. He tried me on some medicines but they didn’t work, so they tried taking some foods out of my diet. I wasn’t allowed anything containing dairy, eggs, wheat or soya. This didn’t work either and all my symptoms continued. The doctors then tried me on this diet and lots of new medicines, but none of these worked either. They then tried me on some drugs called chemotherapies which they use to treat people with cancer. These made me more unwell and sick but still didn’t help me. The doctor didn’t know what else to do. So eight months ago he decided to give my tummy a complete rest to see if it would get better.
He put a tube in my nose that went all the way into my stomach. I didn’t like the tube because it hurt a lot. The doctor then gave me a special formula through the tube. I couldn’t drink this formula because it smelt so horrible. The doctor said that we would do this for six weeks to see if it made my tummy better. The tube was very uncomfortable and I kept being sick so the doctor decided to change my tube to a different type of tube called a PEG. This tube was inserted directly through my skin into my tummy. I was hooked up to a pump, which sent the formula down to my stomach little by little. During the day I carried the pump in a backpack which was very heavy, and I had to take it with me wherever I went. At night, the pump was hooked to a pole and I got my nutrition while I slept.
My tummy began to get a bit better and it was the first time in many years that I had days without being in pain. After six weeks passed, I saw the doctor again, and he said that I could try introducing some foods back into my diet. I went straight home and had a small potato. The next morning I woke up in terrible pain, just like I had had before. My doctor had to give me very strong medication called steroids, to help me and told me not to eat anything else. I had to continue just having the formula through my PEG. The only thing I could put in my mouth was ice and water. This pain lasted for six weeks and after this the doctor suggested that I tried another food. I tried chicken and the same thing happened. Again I was in pain for another six weeks and had to take lots of different medicines. I was so ill that I couldn’t go to school and didn’t want to do anything except be with my mummy. After this we tried sweet potato, but the same thing happened again. I told my mummy that I didn’t want to try any more foods because I couldn’t bear the pain and that I was better having no food and no pain, than having food and all the symptoms that happened whenever I ate anything.
So now I have my feeds throughout the day and all night while I am sleeping. Some days my pain isn’t so bad, yet still sometimes I cannot sleep or do anything because the pain is so bad, even though I am not eating anything at all.
I try to carry on and go to school and have friends like most other kids. Sometimes I can, sometimes the pain is too bad. I often get sad at what should be fun times like parties when I cannot eat anything. I watch my family and my friends eating food every day and I wish I could have whatever they are having but I know that I can’t. Sometimes I smell their food, other times I hide when they are eating.
My mummy tells me that there are 2000 other children at Great Ormond Street Hospital alone with the same condition as me. Yet the doctors are still not sure of the best way to treat us.
Thank you for taking the time to read this. I hope that you have appreciated my story.
Sammy Bentwood (aged 6 ½)
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