Crohn’s disease is a long-term condition that causes inflammation of the lining of the digestive system, and according to the NHS, affects approximately 115,000 people in the UK.
How the condition manifests itself can vary from patient to patient; general symptoms include diarrhoea, abdominal pain and unintended weight loss.
While that gives you some idea as to what the illness is about, it doesn’t quite paint an accurate picture of what it’s like to live with.
Here, one person has spoken to The Huffington Post UK about how the condition affects her daily life.
Ruth Adley was diagnosed with Crohn’s disease in 1983, and after one operation continues to adapt her life around the condition and her symptoms.
1. Tiredness plays a massive part.
Fatigue is a huge part of Crohn’s disease that people don’t realise. And this isn’t just tiredness, this is extreme tiredness that leaves you wanting naps throughout the day, which can make balancing work and a social life pretty difficult.
2. When you have to go, you really have to go.
Adley says that when she walks her dog first thing in the morning, before she had her operation, she was often left knocking on strangers doors to ask to use their toilet.
“People don’t realise that when you need to go, you need to go.”
3. Picking a restaurant is based on toilet facilities.
For most people, people a restaurant is about the latest place on Instagram, or the menu, for Adley it is about the toilets. She doesn’t like going to places with only one male and female cubicle, for fear of causing a queue.
4. Travelling is another league of complication.
Lots of people are nervous flyers, or notice their bowel movements are affected by long-haul travel, but Adley says that even commuting on a train means lots of planning. For example, at an airport, she has to think about getting from the departure lounge to the plane. Will there be a toilet? And let’s not even talk about delays.
5. Salad and fruit can make it worse.
Dietary impact is different for every person who has Crohn’s (and foods that trigger responses) but Adley says that she finds eating too much salad and fruit actually makes her stomach more sensitive, as well as coconut or milky drinks.
6. It changes how you think about having children.
Although Crohn’s is not genetic, it is familial – Adley’s sister also has Crohn’s – and before having her children she spoke to her doctor about the likelihood of passing it along. “Whenever my children got an upset stomach I worried that this was it,” she said.
ForCrohns is the only charity in the UK dedicated solely to Crohn’s disease.