4 June 2024

By Angela Woods, Crohn’s and short bowel syndrome patient

My history of bowel disease started when I was a teenager. Whilst re-sitting GCSEs at College in the late 1980s, I started experiencing pain after eating. I had disordered eating, which I was not being treated for, so my eating patterns were unusual. When I did eat normally, I experienced intense pain.

I was initially guarded about this pain, feeling guilty and worrying it was my fault. Over the next four months my mum took me to a series of doctors who dismissed my pain. My mum persisted and took me to see a consultant who was a family friend one Saturday evening. Thankfully, they took my symptoms seriously and referred me for an exploratory laparoscopy the following Monday.

I went in for an investigation but woke up to be told I’d had a bowel resection. I’d lost 30cm of my bowel during a 12-hour emergency surgery. It was a complete shock and a dramatic introduction to the disease I’d been living with – severe Crohn’s disease.

I was told I’d be lucky to live to the age of 30, but despite the odds, I completed my A levels and managed to secure a place at a local University. Whilst there, I threw myself into understanding the foods that triggered me – including chilli, chocolate and coffee – and, to the surprise of my doctors, managed my condition drug-free until my early 30s.

At 32, I was told I had endometriosis, which was made worse due to the bowel surgery I’d previously had. I had further surgery to remove the cysts from my ovaries, and was referred to a new bowel surgery team at Bolton.

Initially the team at Bolton monitored my symptoms but were concerned that I had extensive narrowing at the site of my first bowel section that would at some point require surgery. They switched me onto a maintenance therapy to help manage my symptoms, which included bloating and tiredness. Eventually I was unable to eat bulky solid foods and decided to proceed with a resection in 2014.

Things have changed quite significantly following the second surgery. I now manage an array of symptoms linked to “short bowel syndrome” including irritated guts, bloating, diarrhoea/constipation, bile acid malabsorption, small intestinal bacterial overgrowth, and an intolerance to many different foods.   The nerves and/or muscles in my gut don’t work properly so it is difficult to move food, fluids, and air through the digestive system. This can cause pain and bloating. In the 10 years since my second surgery, life has been very challenging and my diet is extremely restricted now. This does have a massive impact on my ability to socialise, but I am trying to find ways around this.

As a result of short bowel syndrome, my weight has dropped again, and I miss being able to live life without planning around food. But I do try my best to stay positive and focus on the things that I can do. I still run and swim, and I work full time. I’ve been told by my doctors that there’s nothing else they can do to help with my symptoms, but I’m still experimenting to see what works for me and am convinced a healthy gut microbiome is the key. I am working with a dietician to explore different ways that I can support my guts to have a healthier microbiome. As a teacher, academic and researcher in health and social care I am very engaged and motivated to develop a better understanding of the many different ways we can stay well whilst managing chronic conditions such as Crohn’s disease and other bowel conditions.

I’m pleased to be part of Bowel Research UK’s PaRT network so my experience as a patient can feed into research, and I’m happy to see Bowel Research UK are funding more research in the gut microbiome as it’s clearly an important area, but there’s still so much we need to learn about it.