Q&A with Isobel Evie

Living with Crohn's : Isobel, pictured recently, now she's on medication.

Isobel Evie, 22, lives in Doncaster with her partner. She was diagnosed with Crohn’s disease in 2015 after months of suffering from various symptoms. Courtney stevens catches up with Isobel to learn more about her journey with Crohn’s disease.

*Crohn’s disease is an inflammatory bowel disease that causes chronic inflammation in the gastrointestinal tract.

When were you diagnosed?

“I was diagnosed at the end of 2015, when I was 17. I’d been going backwards and forwards from the doctors for about a year with different issues like weight loss and mouth ulcers and I just wasn’t taken seriously. Luckily I had the chance to go privately because if I had joined the NHS wait list then I would have had to wait months for an appointment and by that point I would have had to go to A&E. Once I was diagnosed, I had to have an iron infusion and I’d lost about three stone.”

What were the symptoms?

“Fatigue was a massive one. I was so tired and I just lost interest in everything. I also experienced some depressive episodes which was a weird one for me as I’ve never really been someone who struggles with their mental health. I had a lot of mouth ulcers and lost a lot of weight. Going to the toilet was painful, bad stomach cramps, loss of blood. I also struggled to eat because of the pain and then when I did eat, I would feel sick.”

How did it feel getting a diagnosis?

“It was such a relief getting diagnosed because I thought I was going crazy. It didn’t really hit me until a few years later that this was something I would have to live with.”

Impact it’s had on your life/those around you?

“The biggest impact for me is the fatigue. I do get a fear of missing out and I’ve lost friends along the way because people think you’re not the same as you used to be. The tiredness and not really feeling my age is the hardest one for me. There’s also the worry of the future because you could flare up at any time. You don’t know what’s going to happen or how bad it’s going to be.”

How do you manage symptoms day to day?

“I’ve been on immuno-depressants since I was diagnosed, and I will probably be on them for the rest of my life. I used to have transfusions every six weeks at the hospital which would take me out the whole day, but now I inject myself every eight weeks which is a lot better. I also have B12 injections at the doctors every 12 weeks, take pain killers and use hot packs when needed. There’s also things like managing my stress levels as it can make my symptoms worse and having to learn what foods I can and can’t tolerate.”

Where did you go to get help with your diagnosis?

“It wasn’t until a year or so after my diagnosis that I got involved with the Crohn’s community and I also went to therapy which has been helpful. There’s a few people I’ve met through Instagram and I know some people who have different kinds of autoimmune diseases who I can relate to in terms of the changes we have to go through.”

Have you come to terms with the fact that you will have this for life?

“Overall, I think I have but I still get moments where I think ‘I’m fine now but will I always be fine?’. It’s the not knowing that worries me. I know I am in the best position and have really good care but knowing that things can change at any moment is scary.”

*For more information visit : Crohn’s Disease & Ulcerative Colitis Information (crohnsandcolitis.com)