My journey with Crohn’s disease, as a nurse and a patient
Thursday, September 8, 2022
Beth Fenwick recalls how 20 years of living with inflammatory bowel disease led to stoma surgery and a career in specialist nursing
Hi, I’m Beth. I am 32, from Sheffield I live with my partner and 5-year-old daughter. I work as a clinical nurse specialist in inflammatory bowel disease (IBD), the condition I have been living with for the past 20 years.
My story began back in 2004, when I was 14 years old. I started realising something wasn’t quite right when I wasn’t able to get to toilets quick enough and having toilet trips 20+ times per day. I was losing weight rapidly and passing lots of blood and mucus in my stools. At that age especially, it was not easy to deal with, as there’s such taboo and stigma around toilet talk. I mentioned it to my mum, who is also a nurse, and she had already realised I wasn’t myself. She immediately took me to our family doctor, who got me in quickly for an urgent colonoscopy. This scan showed widespread inflammation, and they diagnosed me with a type of IBD called indeterminate colitis.
‘I wasn’t myself’
From dressing hair
After school, I trained as a hairdresser and worked in the industry for 7 years. Throughout this time, I had been taking lots of different medications, including steroids when needed, along with regular endoscopies, but I was never able to take good control of things. Eventually, I made the decision to retrain as a nurse. When I moved away to study nursing at university, I was taken under the care of a new team who looked further into my uncontrolled disease. The team found it was not in fact indeterminate colitis but Crohn’s disease. At this point they decided to start me on some stronger medication. These drugs always temporarily calmed things down for a few months but never for long before the disease would be in full flow again. By this point, I was in the middle of my nurse training and running to the toilet 20+ times a day, trying to manage shift work, assignments and exams, as well as holding down a job. It was tough. I was bouncing back and forth to see the IBD team for endoscopies, steroids and hospital admissions to try and suppress symptoms and give the new drugs a chance to work. However, this was to no avail, and I never gained much control.
'I was never able to take good control of things'
To intensive care
After I finally qualified as a nurse, I moved to Sheffield, where I started my nursing career in intensive care. Being a nurse in a place like intensive care, I was working 13-hour shifts, day and night, and I had to be there mentally and physically the whole time. What’s more, the nature of the role meant I was required to always stay beside my critically ill patients, maintaining a lot of very complex machines and drugs. This was always so hard when I was still struggling with the need to dash to the toilet several times per shift. On top of this, I was having fatigue, joint issues, hair loss and sore eyes and skin. I was feeling low with it all. It was hard, and I really struggled at times. Thankfully, I was working with a fantastic team, which really helped, as they always looked out for me. I was also under a new IBD team in Sheffield, and they started with the investigations again. This included more of the dreaded endoscopies, MRI scans and other tests, which showed that the disease had spread through my entire colon, rectum and some of the small bowel. I was then started on more strong medications (biologics). I worked through all the drugs available to me. Again, all of these would work temporarily, but, nonetheless, I would inevitably end back in hospital on intravenous steroids before repeating the whole cycle.#
Beth in the intensive care unit
Going for surgery
This continued until I had tried all the medication offered to me over the years, and the doctors started mentioning surgery. They had spoken of this previously, but I had always been very reluctant. Due to the nature of my disease, and the fact it was in the entire colon, my only option was an ileostomy. I was so against this surgery at first, feeling frightened and reluctant, despite being a nurse myself. However, I desperately needed some relief from the debilitating symptoms I was having. What’s more, I was soon to have a little girl, and I knew I needed to do something to improve life for us all. I knew surgery was my only option, so, after all, we set the ball in motion, and I underwent surgery to form my ileostomy on the 13 August 2019.
‘My only option was an ileostomy’
Recovery and relief
From first opening my eyes after the operation, it wasn’t easy. However, it didn’t take long to feel incredible mental and physical relief from not needing to run to the toilet 24/7. The postoperative recovery was difficult and painful, but that comes with the nature of major surgery. I received excellent aftercare, and, before I knew it, I was back home and living life to the full. I would say that within just 6 weeks I felt mostly better, and I just couldn’t believe the difference in how normal I felt compared to before the operation. The relief of the main debilitating symptoms was like nothing I have ever felt. Through living with Crohn’s for so many years, I had not realised how abnormal my life was; I was just so used to it. After taking a few months off work, I returned to work feeling like I could take on the world. I started taking overtime on the intensive therapy unit. This is shocking, because before the operation I could barely manage my normal shifts. Now that I have my ileostomy, I only need to remember to have a good stock of supplies in my locker in case of any emergencies and perhaps the odd trip to empty a bag. Overall, my stoma has allowed me to live life to the full in my personal and working life.
‘The help is there for everyone’
I dreaded the surgery and put it off for so long, but, with the right help, support and education, it has been one of the most life-altering, empowering things I have ever done. My biggest piece of advice for someone facing this surgery is to be open and honest with people, ask the questions, do your research and reach out for help when you need it—whether that be from doctors, nurses, friends, social media or anything in between. The help is there for everyone, and for most problems you may face, whether it is a new pouch or supporting product, or people on a social network. The recovery from stoma surgery is not straightforward, but it is achievable with the right mindset and support.
‘my main resource was social media’
One of the positive outcomes from going through this journey has been the network of people I have met and the opportunities I have been given. When facing the prospect of needing a stoma, my main resource was social media. I found great comfort in talking to other people like me who were a similar age, and I found this network on Instagram. I set up my own page on Instagram and Facebook called @beth_without_a_bowel, where I like to advocate for people with stomas and IBD, while raising awareness and educating. After setting up my social media accounts, I have been lucky enough to make some great connections and been given amazing opportunities, from being a Coloplast ambassador to speaking at events, to even speaking in Parliament. It has been brilliant to be able to use my experience and platform to help others on their journey with a stoma, or facing a stoma, and I hope to be able to always continue this.
Beth Fenwick is a specialist nurse who lives in Sheffield with her partner and daughter