Today on World IBD Day I am handing over the reins to the beautiful Carla who was diagnosed at the beginning of 2020 with Crohn’s Disease. She is just 20 years old and has had to get her head around something she had never even contemplated. After chatting with her Mum I suggested she write an article for me to share. If Carla is feeling frightened and isolated by her condition, it stands to reason that there will be others out there in a similar situation. Over to you Carla xxx
By Carla Spenceley
I’m not someone to normally post a statement or strongly use social media, however, I feel this is a platform given to us all so that we can share our voices, tell our stories and support our communities.
Today is a special day for me because it’s World IBD Day. Many people don’t know what IBD is, I certainly didn’t until recently. IBD stands for Inflammatory Bowel Disease, known more specifically as Crohn’s Disease or Ulcerative Colitis.
When everything changed
After many months of being unwell, in January this year, I was finally diagnosed with Crohn’s Disease. To put it simply, there is no cure and it comes with a lot of pain and discomfort.
Learning to live with Crohn’s Disease has been hard. I can’t leave the house without pre-planning where the nearest bathroom is going to be. When I do leave the house, I only last half an hour before the pain becomes too much and I need to rest. It has not only changed my life, but it’s also has changed my family’s life. Where I was once able to be spontaneous and travel for hours on end, I now can’t leave the house without knowing the full details of where and how long for. Crohn’s Disease is more than just inflammation of the bowel, it’s a life-changing condition.
Mental Health
My mental health has suffered due to the side effects of the various treatments I have tried and my physical health has drastically changed. Waking up in the mornings to a swollen face, severe abdominal pain and having constant nausea is certainly not the typical morning routine of a University student.
Medication
Currently, I’m still on a trial and error period with my medication. Although it’s probably more accurate to say error. Recently I started on a treatment known as Imraldi (Adalimumab), which means I get the enjoyment of self-injecting medication into my system every two weeks. The medication is used to stop my immune system from attacking itself. However, by stopping my immune system I’m now at risk of every cold, flu and sickness bug floating around in the air.
The possibility of surgery
Many people with IBD end up having surgery at some point in their lifetime to either remove part of the damaged bowel or to have an ileostomy bag. Whether this is the route I will end up taking is yet to be discovered.
Fear and uncertainty
Before undergoing the various examinations to determine my diagnosis, the Doctor had to sit me down and explain that while he strongly thought I had IBD there was still a small chance it could be Cancer. The following three weeks, during which I had multiple scans, a colonoscopy and a sigmoidoscopy, I was emotionally numb.
The thought of being nineteen and having bowel cancer was not only scary, but it was also life-changing. It’s mind-blowing to think that so many of us go through that conversation and yet so many people don’t even know what IBD is, let alone the process we have to go through leading up to a diagnosis.
Please Be Kind
This is why with everything going on in the world, especially COVID-19, it’s crucial to remember all those other Illnesses, big or small, that people have to battle with every day. Crohn’s and Colitis UK do all they can to support us, but it’s raising awareness and encouraging funding which is crucial.
Support those around you because you honestly don’t know what people are going through. Not everyone feels they can speak out. Not everyone feels confident in asking for help whether it be for mental or physical illness. #BeKind
