How Crohn's Disease can exist outside the gut - Khatijah's Story

I started to exhibit symptoms of Crohn's Disease when I was thirteen, but I wasn't diagnosed till before my fifteenth birthday. My symptoms differed because I was also suffering from ectopic Crohn's. This means that my Crohn’s is active outside of the digestive system and affects other parts of my body too. My combination of symptoms is quite rare.

It really hindered my diagnosis of Crohn's as a whole, because there was a lot of uncertainty whether it was connected to the recurring undiagnosed stomach problems I was suffering from. Eventually, a dermatologist I was referred to regarding my ectopic symptoms diagnosed me and wrote to my gastro team. After the endoscopic procedures, I was diagnosed with Crohn’s and told I also had ectopic Crohn’s. It shows that Crohn's can go beyond the gut.

From then on I was waved through a motion of doctors, hospitals. I even became a case study for the ectopic part of my condition, going from the hospital one day to sitting my exams the next day. When I was first diagnosed I started an Infliximab drip and maintained a course of Azathioprine, which managed to keep my condition steady.

Fast forward ten years and I now take Infliximab injections to manage my condition, but sometimes there is more I have to do to avoid flaring up.

For me, it's about trying to manage aspects of my life that I would have never given a second thought to before my diagnosis. It is an immune-mediated condition, so I know what foods and triggers contribute to a flare up.

Another challenging aspect is the lack of education regarding Inflammatory Bowel Diseases (IBD) like Crohn's and Colitis. When I was in college, I was told off for using a staff toilet in a moment of desperation. There were stigmas, sometimes cultural, sometimes myth, attached to chronic illness that I had to face - countless people telling me that taking medication was like poisoning myself, to the idea that I was too young to be ill and therefore, this illness must've been in my head. There's a lot of emphasis on "seeing it to believe it", but with a condition with Crohn's, an invisible disability, you might look fine and still be suffering inside.

Another thing that I hear people say is that they know someone with your condition and they "manage it better" than you do, or that they know someone who has Crohn's or Colitis and "they can live a normal life, I can't see why you can't." I think it's important to address that every person has a different experience with Crohn's or Colitis, and different treatments and plans work for different people. As unique as each person is, so is their experience and management of Crohn's.

It's quite daunting thinking about a future with Crohn's in it! I was feeling quite unsure about what sort of future I'd have when I was first diagnosed at fifteen with a condition like this.

Right now, I'm following my aspiration to write novels, and I can do so because of the services available that I access today - new medications and treatment options, specific support groups like IBDesis and Crohn's & Colitis UK that help discuss topics that might seem taboo, and the support of so many people, family, friends, health services and teams, and campaigns that are actively trying to make Crohn's awareness and management more effective.

Like I said, I take one day at a time when managing my Crohn's, but I'm hopeful in knowing that IBD treatment, support and awareness is growing exponentially, and will continue to do so in the coming years.

If there is one thing I have to say about having IBD from such a young age, it's that I thought I had lost my teenage years to countless procedures and hospital appointments, and because of that, I felt like I am behind my peers in all aspects of life. But I've learnt that this not true, and what I really need to do is to give myself space and time, to do things at my own pace.