Clare: a mother's story

We joined the IBD world in March this year when Oscar was diagnosed with Crohn’s disease after being unwell since the New Year.

I was always proud of the fact my 13 year old was someone who thoroughly enjoyed his food, would try almost anything and we had no problem getting fruit and veg down him, unlike his 12 year old brother! But that changed quickly and he started not wanting to eat or left much of his food. He would rush to the toilet and was clearly experiencing significant stomach pain when eating and also when sat on the toilet and he had much less energy than normal.

After around 4 GP visits, treatment for presumed constipation and finally blood tests, he was referred to the Paediatric Gastroenterologist and had a colonoscopy and endoscopy with biopsies which gave the diagnosis. Then followed the EEN - exclusive enteral nutrition which required tweaking by the paediatric dietitian until we found something he could actually stomach. Seven weeks later of not complaining and just getting on with it, Oscar had gained much more weight, has his energy back and looked so much healthier. During this time, the immunosuppressant azathioprine was starting to dampen down the inflammation.

However, the Crohn’s, has reared it’s ugly head since resulting in a long course of steroid tablets. The first week of summer holiday camping in France was, in Oscar’s words, spoiled, due to recurring pains, nausea and vomiting. Following a desperate email to our consultant we increased the prednisone and he was a different boy in the second week on holiday.

But frustratingly though, in the last week, again he has started to struggle with eating and has diarrhoea again, telling us he does’t feel his best. He has a routine paediatrician appointment next week so at least I know we can hang on for that.

That one word, Crohn’s disease, was the first moment of the start of a quite different and even more challenging life for him. I knew my husband felt the same, in fact gutted is the best word to describe it.

Then after a little while as Oscar improved on the EEN, I did feel relief at this, but also some denial. Actually, is it certain that he has Crohn’s?

I didn’t delve any deeper into the IBD literature other than what was available from the CCUK and CICRA charities. Their information felt safe, but once I moved on from this denial feeling, I searched on Google Scholar and in forums, the information found here wasn’t safe and often actually felt scary.

I became fearful of Oscar’s future, what was he going to have to go through, what if something happened to me and he didn’t get the support I feel I can give him, how would he cope? The side effects of the azathioprine really got to me - lymphoma and one particularly rare type which had a terrible prognosis.

But it isn’t me having to deal with it, so I also now feel guilty.

Oscar has to put up with the daily questioning:
“how are you feeling?”; “what have you eaten?”; “have you had any pain?”; “what is your poo like today…?”

Then, in and amongst this I feel even more guilty because at least my son has a life.

As a registered children’s nurse, I have seen families go through a hell of a lot more. Serious illness, disability and even loss of a child. How can I feel sorry for us when on the grand scheme of things it really isn’t that bad, people tell us they know of others with Crohn’s who are absolutely fine, get on with their life and you wouldn’t know they had it.

And what about Oscar’s loving dad, my husband. How does he deal with it? I often do wonder, but we don’t really discuss these things, only the practicalities such as what was said at the latest clinic appointment. So I try to keep how I feel under wraps. I don’t know any other parent with a child with IBD, other than a little WhatsApp group of a few parents who attended an excellent CCUK family day in May and to whom I send the odd message when I’m feeling desperate for support. It is an unpleasant and lonely place to be.

I would love for there to be much more awareness of IBD in children, as on Googling chronic conditions in children, rarely IBD comes up as one of them. Yet is is increasingly more prevalent with a large increase in the numbers of children being diagnosed and therefore more important to talk about. But mainly though for the young people themselves as they have to live with it for the rest of their lives and, to my knowledge anyway, have even less people who they can share with and understand how they feel than even their parents.