Sarah and Daniel’s story

Meet Sarah and Daniel – parents of 12 year old boy with Crohn’s

Our child was complaining of stomach pains and changes in toilet habits for a few months. It got to a stage where he was crying in agony two to three times a week. Since Crohn’s is in the family, we decided to have him checked out by a Gastroenterologist when he was 12 years old.

After months of waiting for blood tests and other things, they sent him for endoscopy and colonoscopy. The result was conclusive. He has chronic inflammation inside his small bowel with a definite diagnosis of Crohn’s Disease. To be honest, our initial reaction was not one of surprise as we expected this. What we did not expect was the immediate changes in lifestyle that this would enforce upon us.

He was immediately admitted into hospital for three days of observation and was put on a six week no food diet. To be clear, a no food diet means No. Food. Not one bite. No drink besides bottled water and sugar free chewing gum to remind him how to chew. He had to drink 2 litres of this foul smelling and even fouler tasting “milk shake” every single day. The instructions on the feed described it as having a pleasant, mildly vanilla flavour. Well, it doesn’t.

Preparing the feed and – more importantly – making sure our son drank it all and didn’t “cheat”, involved many bribes, cajoling and even threats and reminders of stories we’d heard from friends about what would happen if he didn’t comply.

We used to flavour it with Nestle Chocolate Milk Powder (brilliant cross-marketing by the way) and while that made it bearable, it was never enjoyable. Making the feed daily was no fun either.

As our son is 12 and most of his friends were celebrating Bar Mitzvahs, he was constantly being invited to parties where all his friends were chowing down on the best food any kids could want, none of which he could eat. This really challenged both him and us, but happily he did actually comply with the diet. He was started on an anti-inflammatory steroid along with the feed and he will remain on it forever, or until his symptoms worsen, whereupon they will be upgrading him to more powerful drugs.

His symptoms seems to be doing fairly well right now, although he still complains every day of stomach pains, happily not as bad as they used to be.

The most difficult thing about our son’s Crohn’s is the knowledge that he’ll never be able to fully appreciate food like other kids do. He’ll always have discomfort from some foods and we don’t know if it’ll get worse. Right now it doesn’t affect our day to day life but that’s because we’re in a calm period. When he hits a bad spot, like he did a few months ago, the rigmarole of hospital admissions and total-nutrition feeding will start again.

He has to have checks every three months in hospital. Blood tests are not his favourite thing on the earth. His dietician is in constant contact, which we find very reassuring.

Overall the paediatric gastro team at the Royal Free Hospital have been absolutely brilliant and we can’t fault our son’s care at all.

We have had long discussions about whether to tell people about our son’s condition. We have heard from other people that it may affect his marriage prospects, stigmatization, labelling and other horrible things for a kid to go through. We disagree. We feel, as a family, that this disease can only be stigmatizing if you make it that way. We have nothing to hide, and we have reinforced in our son’s mind that this diagnosis doesn’t change him one iota as a person. All of his friends know about it – as do our friends and family – and they discuss it openly. They have all been nothing but supportive.

Our opinion is that not discussing it, not acknowledging it, and trying to hide it, is what makes it a big deal. Once we accept it as a regular part of our son’s life, that’s exactly what it becomes.