Fodmap - Lilly's Story

Over the years, my family has been blighted with stomach problems. 

In the interest of helping others, over the next few weeks, I will share with you our journey back to health.

This is Lilly’s story:

My eldest daughter, Lilly, started having severe stomach pains and blood in her stools at the age of 10. After a lengthy period of diagnosis and several prescriptions for laxatives to cure her ‘constipation’, she had an endoscopy at Great Ormond Street Hospital (GOSH). I received an emergency telephone call one evening after dinner to say that Lilly needed to start taking steroids immediately. She was diagnosed with auto-immune atrophic gastritis. 

I remember sitting in front of my doctor the next day in tears as he told me there was no other option if I didn’t want my daughter to face the possibility of having a colostomy bag, live failure, cancer… you name it… in later life.

“What about diet?” I asked. “Could she be reacting to certain foods?”

“It’s possible, but she still needs the drugs.”

Lilly started the steroids and over a very short period of time gained two stone in weight. Her beautiful face was disfigured and she became withdrawn and unhappy.

There followed an extremely difficult time during which Lilly was put on a drug called azathioprine and once this kicked in she was allowed to come off the steroids. It took a year for her to lose weight and even longer to regain her confidence.  

I took matters into my own hands, over the next few months, we tried gluten free, diary free, preservative free and every other diet I could find. Some things helped for a while but, by now, her symptoms were being masked by the azathioprine so it was difficult to know what worked and what didn’t.

Several trips to GOSH and many more tests later, Lilly remained on the azathioprine. Six years later, I found a sympathetic consultant who agreed to try and wean Lilly, who was by now a young woman, off the drug. It took another year for that to happen.

She was well for a while but two years later, some of her symptoms returned and we found ourselves back in casualty.

“Do you think she might be constipated?” a nurse asked, as Lilly rolled around in agony.

Here we go again, I thought,

The medical profession shrugged their shoulders and prescribed paracetamol, which was as much use for her condition as it is for childbirth.

Lilly was referred back to the hospital and the round of tests began all over again.

“No, steroids mum,” Lilly insisted, “I’d rather die.”

“No steroids, not this time,” I promised.

Then on a bleak January morning, as I sat opposite yet another consultant with my daughter ready, as always, to fight her corner, he said the word that would change the lives of not only Lilly, but the whole family; Fodmap.

“Fod what?” we asked in unison.

“Fodmap (Fermentable, Oligo-, Di-, Mono-saccharides and Polyols). It’s a very specific diet and it has helped a lot of people like Lilly with persistent stomach problems. Rather than prescribe any more drugs, I’d like her to try it.’

And that’s exactly what we did…