Humans of Scotland

Alison’s story – living with Crohn’s

"I want people to know that its hard enough to be living with the condition without being made to feel ostracized."

This story is about: Long Term ConditionsInflammatory Bowel DiseaseInvisible condition

“I have Crohn’s disease. It affects me by having periods of remission and the opposite of flare ups. I regularly have bad days were my immune system is low, resulting in regular trips to the bathroom and extreme fatigue, dehydration and headaches.

These symptoms worsened when I started teacher training in the early 90s. I had a series of investigations which led the health specialists to diagnose IBS but I never felt this was correct with one professional being very condescending, stating it was stress and maybe if I stop worrying and started a family I might feel better!

I have been on a series of medication for Crohn’s that would work for a period before failing. In 2012 I had resection surgery to remove a part of my bowel due to inflammation and stricture in an area. There are unknown facts about the long-term use of medication.

There are many things that are difficult about having Crohn’s but one that I feel affects me is letting family and friends down due to having to cancel social events often at the last minute. There are other things that are hard about having Crohn’s, like the fatigue, I just need to get on with as I don’t want the condition to get the better of me.

I want people to understand that my condition can flare at any time. I would like people who don’t know about the disease to try and be a little more understanding for example in cafes, restaurants or pubs who have signs saying customers use only. This can be very distressing to someone with Crohn’s as often we are scanning looking for the nearest toilet. Even with my “I can’t wait card” I have had issues with people not allowing me access to a toilet in a business.

Not gaining access to the toilet could make some people with the condition isolated as the fear of the condition worsening when out may cause them to stay home. I want people to know that its hard enough to be living with the condition without being made to feel ostracized. “