My name is Najah Ali, I am originally from Syria and I have a 13-year-old son called Hasan.
Hasan was diagnosed with Crohn’s disease two years ago, when he was 12.
Before a diagnosis
I would describe life before Hasan’s diagnosis for both my son and our whole family as very stressful. Hasan began to really suffer when he turned 11 and I suddenly found that I was spending all of my time running from one hospital to the next, desperately trying to find a doctor who understood his condition.
Hasan’s energy levels became extremely low for such a young boy. He was losing weight, had diarrhoea and constant abdominal pain, and I noticed he had sores around his mouth too. As his trips to the bathroom increased, he would leave his food suddenly and rush to the restroom. I followed him one day, and that’s when I noticed blood in his stools.
Getting a diagnosis was not easy at all. Despite always being in hospitals and emergency departments, we never got answers. We knew that Hasan had a very high white blood cell count, but no one knew exactly what was wrong. Then one day he had an X-Ray, where we discovered there was an issue in his intestine.
We were advised to see a Gastroenterologist who, after visiting every day for a week, finally diagnosed Hasan with Crohn’s disease. We were then advised to see a Paediatrician to confirm the diagnosis. No biopsy was done to confirm the condition and after being prescribed some initial medication, we eventually found Dr Maryam 3 months later. She was the first person who truly helped Hasan and stood by our side.
A life changing moment
When my son and I met Dr Maryam, she truly empathised with how badly we were suffering. She vowed to help with Hasan’s condition and made his health her priority.
Once we were told Hasan had Crohn’s disease, I’ll admit my immediate feeling was relief; I was so lost before not knowing what was causing his pain. It felt good to be able to move forward. Thanks to Dr Maryam, my son is now getting better. Hasan’s journey since diagnosis has still been a big challenge for him though, and our whole family has struggled.
Even though nursing is my profession and has been for a long time, I had no idea about this disease. My son’s diagnosis was the first time I had ever heard of it.
It took months to accept Hasan’s diagnosis. I was tearful and stressed at every appointment and only recently has that began to settle. The most worrisome aspect of Hasan’s diagnosis for me is the cost of his treatment. My husband reacted badly too, suffering from a heart attack due to the stress and he now lives with a catheter.
At home, our family was upside down, especially when Hasan had to spend nights in the hospital, not wanting to accept his diagnosis. It was extremely difficult for such a young child to understand. He could see that all of the other patients in the hospital were adults, or elderly, and he was the only child there. He would ask himself, “Why me?”.
I struggled to take care of my other two children and their studies suffered too. I found myself focusing on Hasan but ignoring his studies because I had to focus on making sure he got better above everything else. I spent a lot of time overthinking things, and I became very sad.
One thing that really made me feel better was knowing how much Hasan loves and trusts his doctor. He reads all her news articles and really respects her. This really helped us through.
Hasan’s ability to play and exercise with other children was really affected by the onset of Crohn’s disease. But luckily, his close friends were very sympathetic towards him. They would visit him at home whenever he came back from the hospital and were always worried about him and always asking how he was doing when he was not at school.
Being sick is not shameful; Allah (God) has done this as a test for us and we do not object.
Improving life for others with IBD
Life before Hasan’s diagnosis was difficult because we simply didn’t know what was wrong. But once we understood and accepted the diagnosis, life became easier. Not overthinking it can be very helpful too! Our doctor plays a very important role in our lives too. In Hasan’s case, Dr Maryam made him feel that everything is alright, and she always speaks to him like a friend.
Hasan’s treatment began with Cortisone, but he currently receives biologic treatment four times a month. Additionally, Hasan takes supplements to boost his immunity and sticks to a healthy diet. It took some time before his treatment controlled his symptoms; in the beginning the treatment didn’t make him feel much better at all which was hard for us to deal with.
Hasan lives an unrestricted life now and things are easier. He sometimes forgot to take his pills though, but nowadays, he reminds me every Saturday because he made a promise to his doctor to take care of himself and he really wants to get better.
My support network
Throughout this journey, my mother and my best friend have been the biggest support to me and my family. One of Hasan’s friends is living with a very serious illness and naturally, my son compares his situation to his friends, and it has made him realise that he has a lot to be thankful for.
I think the most helpful resource to anyone who is newly diagnosed or is living with someone with IBD is to have supportive people around you. A father, mother, siblings and friends have an important role to play in the patient’s life. Although it can be hard, parents should try not to single out the unwell child, and treat all children equally, so no one feels ‘different’.
The most essential support for our family though, was having a doctor who vowed to stand by our side.
We also found support and resources through charities and support programmes. There is an initiative by Saqr Hospital called ‘Make your dream come true’. They phoned my son and asked him what his wish was, to which he replied, “a new phone and headphones”. They granted his wish and he was delighted. I think programmes like this really support younger patients emotionally and help to reduce the stress and pressure on them.
Life must continue… with or without this disease.