World IBD Day: Jess’s Story

When I was 13 years old I started to feel like something wasn’t right with me. Unsure of what was going on with my body, I just tried to carry on as normal. With every passing week I would feel worse but I would accept how I felt as my new normal. One day I developed lumps on my shins and ankles. They were large, extremely painful, lumps filled with blood. I had also become so exhausted I could barely get out of bed and I was going to the toilet 15 times a night. At this point I realised I couldn’t keep accepting what was going on with my body. After admitting I wasn’t okay to my Mum, she took me to the GP who sent us directly to the local hospital. That day I was diagnosed with Crohn’s disease.

I had no idea what this disease was nor did I anticipate how much it would dominate my teenage years. For the next six years my life seemed to repeat the following cycle:

  1. Start new medication.
  2. Medication works.
  3. Medication fails.
  4. Hospital admission.
  5. Pump my body full of steroids.

Return to step 1, rinse and repeat.

As well as going round and round this vicious circle, I underwent numerous scopes, scans and tests at the hospital and endured weeks of liquid diets (15 years later and I still can’t be within a metre of a strawberry milkshake). Because of the severity of my disease, I was absent from school for long periods of time. When I was actually at school, my days were typically filled with anxiety and shame. No teenager wants to be known as the person with the “poo pass” so that they can go to the toilet whenever they want during class. Neither does any teenager want to be gossiped about for “getting fat” over the summer holidays – thanks steroids. However, I am stubborn. Extremely so. I was determined that my disease would not hold me back. I managed to do well in my exams and achieved my goal of being accepted to study Law at the University of Edinburgh.

The excitement of university was short-lived. As soon as I started my first year I felt awful. The pain was all-consuming and I had no energy to do anything. Attending classes was a struggle and socialising meant I spent days in bed afterwards simply recovering. It swiftly became apparent to me and my IBD team that I would need surgery. I don’t even recall being too nervous or scared at this time because I knew it needed to be done.

After my second semester of my second year at university, I took a year off to have the surgery. In February 2010 I had a pan-proctocolectomy: my large bowel, rectum and anus were all removed and a permanent stoma was created. That night, following my surgery, I didn’t sleep at all. I stayed awake chatting to the ICU nurse because I was so excited. I felt different, I felt better. Looking back, it was probably the extreme levels of morphine in my system but at the time I was convinced I was fixed. Within six months of my surgery I was working full time, within 12 months I was back at university studying and the summer following that I was travelling with my two best friends. It’s no exaggeration to say that the surgery changed my life.

For the 10 years that followed my surgery, I was medication free. My only hospital admission during this time was due to a stoma blockage courtesy of a Mr Kipling mince pie that was scoffed with too much gusto.

Then came the Covid-19 pandemic. In March 2020 I started to feel really fatigued and run down. I assumed I had caught Covid or that it was due to the stress of the pandemic. However, I also started to notice cuts and extreme pain *down there*. Any GP I saw or spoke to couldn’t understand what was causing these symptoms. I was dismissed by Gynaecologists who told me that the cuts would be healed by using manuka honey (spoiler alert: they weren’t). It wasn’t until I saw my GI Consultant that I found out my symptoms were caused by my Crohn’s. I was shocked. How do I have peri-anal Crohn’s when I don’t have a rectum or anus? How do I have vulvar Crohn’s? I didn’t even know this type of Crohn’s existed and I thought I had experienced the full spectrum of Crohn’s during my teenage years.

Yet again, I began the cycle of try medication, fail, try medication, fail, try medication, fail. Except this time I was treated to an anaphylactic reaction during one of my drug infusions. By February 2022 I was in so much pain I could barely move. I was exhausted and felt utterly hopeless. Unsurprisingly, I was admitted to hospital. I understood was necessary but it was also far from ideal considering I had a wedding at the end of May to organise.

Eventually, steroids stabilised the progression of my disease and I was started on Golimumab injections which my body didn’t reject (!!). Adding to this, my Dermatology consultant had found a concoction of lotions and potions and antibiotics which seemed to be helping.

Physically I was doing better but mentally I was struggling. I felt like, at 32 years old, I was back at the beginning with a new diagnosis and was facing the same vicious circle that dictated my teenage years. This new flare up had put a halt on my plans to have a family and had meant I had to make a tactical retreat from my legal career ambitions. More than anything, I felt alone. Crohn’s can feel like a solitary battle and dealing with an uncommon manifestation of Crohn’s, like vulvar Crohn’s, was extremely isolating. While my IBD nurse is amazing, she could see that I needed extra support to help with my mental well-being. She recommended that I get in touch with the Catherine McEwan Foundation to see if they could help.

The Foundation was so responsive to my cry for help and a week after getting in touch I was in a meeting with Avril, a fantastic therapist. I had 8 sessions with Avril. The sessions have been transformative for me. I have learned to truly accept my Crohn’s disease and I feel mentally stronger, more than I have in a long time.

Although I am still grappling with this Crohn’s flare, I feel more positive and more emotionally equipped to deal with it. During this recent flare I had been guilty of thinking “why me? Why was I dealt this bad hand?”. But one of the many things Avril taught me is to flip that on its head and instead ask “why not me?”. I was reminded of teenage me and how she didn’t let anything hold her back. I had forgotten that I am still that strong person. The person who has the mentality to not just cope with Crohn’s disease but to thrive in spite of it.