Crohn’s Disease is becoming increasingly more prevalent around the world and is not yet fully understood by researchers and clinicians. Nevertheless, significant advances have been made in the treatment of Crohn’s, meaning that sufferers can benefit from a greatly increased quality of life.
However, a cure for Crohn’s has yet to be found. While treatments are effective at keeping the symptoms of the disease under control, Crohn’s sufferers still experience significant challenges in their day-to-day lives.
Gary was originally diagnosed with Crohn’s more than a decade ago. He tells us more about his experience living with Crohn’s Colitis.
I experienced my first significant symptom flare-up during Christmas 2009. My main symptoms were diarrhoea, blood in stools, severe stomach pain, nausea, and tiredness. This left me bedbound and meant that I couldn’t spend as much time with my family nor eat Christmas dinner.
The road to diagnosis that followed was rocky – for the first 6 months my GP suspected that I had a stomach infection, and the GP also had to rule out any possibility of me having an eating disorder.
I was finally diagnosed with Ulcerative Colitis in 2010, after several rounds of investigations, including a colonoscopy (used to detect changes or abnormalities in the large intestine and rectum), an MRI scan and multiple blood tests.
My symptoms worsened in 2017, and after receiving another colonoscopy my diagnosis was changed to Crohn’s Colitis, a combination of Ulcerative Colitis and Crohn’s Disease.
Personally, living with Crohn’s Colitis means I generally feel fatigued, and I tire a lot more quickly than I did before my condition. I must take extra toilet breaks daily and I experience variable bowel movements. In addition, I often must plan my day around how I feel and how my condition manifests itself at that point in time.
To receive treatment, I need to regularly travel, which means that I need to take time away from work. I’ve found that not all employers are as supportive and flexible as one would expect, which has had negative consequences on my mental wellbeing in the past.
For almost a decade, I took up to twenty tablets every morning. While I benefited from this treatment, taking so many medications every day was a burden!
I’m currently receiving regular intravenous infliximab treatment. I have been responding very well to the medication which is a huge benefit, and I’m not worn down by daily tablets. But this also means sharing treatment rooms with patients receiving dialysis, blood transfusions and certain cancer treatments, which serves as a reminder about the severity of my condition. In addition, the treatment also negatively impacts my immune system – which is called immunosuppression. This makes me much more vulnerable to disease, including COVID-19.
I’m currently classed as “in remission”, which means that my symptoms are under control. However, it’s expected that treatment efficacy will progressively lower over time, meaning that I may need to try other medications in the future.
Soon after the outbreak of the pandemic in 2020, I was put in the shielding category due to receiving immunosuppressant treatment. To receive my Crohn’s Colitis treatment, I had to go to a high-risk COVID-19 unit on a regular basis.
I also had to shield in my flat for over three months. Shielding had a negative impact on my mental health, as I almost felt trapped in my flat.
Though I’ve received the vaccine, there is a lack of understanding on how well the vaccine protects immunosuppressant people. As a result, I’ve had to be very cautious, and I still am to this day. I still experience some anxiety in public places around other people.
It’s often isolated incidents that can have a lasting impact on your mental wellbeing when suffering from a chronic condition.
One example that comes to mind is being asked to give up my seat on the bus, despite feeling ill during a flare-up. The driver did not believe me and repeatedly asked me to move.
This has led to me feeling anxious about using public transport in case I suddenly experience symptoms and will actively use my own car where possible – as I am in control of my environment.
A lot of Crohn’s sufferers will feel anxious about using disabled toilets due to fear of being judged – Crohn’s is classed as a disability, it’s just not a visible one. That’s something that a lot of people don’t consider.
It’s much more than just ‘a stomach bug’ - it doesn’t just affect your bowel - like the flu it affects your whole entire body (anaemia, joint pain, fatigue, brain fog, stomach and bowel pain) and can severely impact your life.
Crohn’s is far from being fully understood – everyone’s disease manifests differently, so you can’t put everyone in a box.
You can get a 'can’t wait card’ from Crohn’s Colitis UK which helps you access toilets in shops, restaurants, and other buildings (which may not be public facing), without having to give a long explanation about your condition.
Another tip is to keep the number for your allocated IBD nurse close. It can take up to 48hrs to get a reply, but this is a vital resource for advice or flagging a change in your condition. You can find this either on hospital letters you will have received or by contacting your Gastroenterology Hospital Unit.
It really makes you have a look at your lifestyle and provides a strong incentive to lead a more structured life and take better care of yourself. Proper nutrition and lifestyle changes can make a big difference in those that suffer from Crohn’s.
There’s no better time to become part of the Phlo community. Take control of your medication management and join the 1,000s of patients we’ve helped safely manage their medication.