Rachel’s story – Crohn’s disease

Note: At Guts UK, we want our stories to be easy for everyone to understand. If any medical terms in Rachel’s story are unfamiliar, you can find definitions in our medical glossary at the bottom of this page. 

Tell us a little about yourself

“I’m Rachel, and I’m 33. I live in Ipswich with my 7-year-old son and work in fostering and adoption as a marketing coordinator. In my spare time, I love to travel and see the world, and often vlog as I go to share my trips with others.”

When did your Crohn’s disease symptoms begin, and what were they?

“At the start of 2011, when I was 18, I experienced stomach pain and diarrhoea with blood in it. I also lost my appetite, felt exhausted, lost weight and was diagnosed with anaemia. I saw a doctor, who told me it was irritable bowel syndrome (IBS). After seeking a second opinion, blood test results showed high inflammation in my body, and I was referred for an MRI scan.”

Talk us through your journey to diagnosis. How did it make you feel emotionally?

“My MRI results confirmed inflammation in my bowel. In the next few months, I became so poorly that I required a 5-week hospital stay, which included having bowel resection surgery. During surgery, biopsies (tissue samples) were taken and revealed Crohn’s disease. 

Receiving my diagnosis felt so difficult. I had finished my A-levels and should have been spending my summer having the best time with my friends before heading to university. Instead, I was in hospital. I felt so isolated. I didn’t know anyone else with the condition, but it was a relief to finally receive a diagnosis and a treatment plan.”

What treatment have you received for Crohn’s disease?

“I’ve had numerous medications prescribed over the years, but the first treatment that really helped me was Infliximab, along with another medication called Mercaptopurine. However, I experienced total hair loss (alopecia). My consultant told me he’d never seen it happen before. Whilst this was huge for me, it encouraged me to start raising awareness for Crohn’s disease, and I decided to rock the baldness. I stayed on Infliximab for a year as it made me feel so much better.”

How has having a digestive condition impacted your life?

“There have been huge challenges with adapting to life with a chronic digestive condition. 

I’ve also had sepsis in the past, and a perforated bowel six months after giving birth to my son. This led to me needing a temporary ileostomy for six years. I had an ileostomy reversal in June 2025. Having to adjust to life with an ileostomy was a big deal but also, adjusting to life without my ileostomy has been challenging too.”

Tell us about running the London Landmarks Half Marathon for Guts UK

“Having followed Guts UK and been involved in their campaigns and work for some time, I decided to take on the London Landmarks Half Marathon. I’m not a runner, but I really wanted to do something that would push me out of my comfort zone, whilst raising vital funds for Guts UK and the crucial work they do.  

People living with digestive conditions can still do hard things, even if it takes more preparation and organisation, and running the half-marathon was testimony to this. It was an amazing experience, and I loved every minute of it. To date, I’ve raised over £600, and I hope to get the opportunity to do it again next year.“

What advice would you give to others thinking of fundraising for Guts UK?

“To help give back to a charity which does so much to raise awareness and support for those affected by digestive conditions and symptoms is so important. Often, you can feel quite alone when living with a chronic condition, such as Crohn’s disease, but Guts UK has created a community of people who truly ‘get it’ and support one another, and that’s invaluable. “

Why are you sharing your story?

“My story isn’t unique. There are so many others facing similar challenges. When I was first diagnosed, I didn’t know anything about Crohn’s or anyone with it. Similarly, when I had my ileostomy, I was unaware of just how many people have them. It’s vital to raise awareness and show the positives that can come from living with a digestive condition, even if you have to search a little deeper for them.”

Glossary of medical terms:

Anaemia: A condition where the number of red blood cells or the amount of haemoglobin in red blood cells is less than normal. 

Bowel resection surgery: A surgical procedure to remove a damaged, diseased or blocked section of the small of large intestine and reconnect the unaffected parts. 

Ileostomy: A surgical procedure that creates an opening from the small bowel to divert the contents through the abdominal wall into a medical bag which is adhered to the abdomen. This can be temporary or permanent, depending on what parts of the lower digestive system are removed. 

Ileostomy reversal: A surgical procedure which removes the need for an ileostomy. This reconnects the small intestine to the remaining bowel left in the body, allowing poo to pass through the rectum again.  

Infliximab: A biologic medicine. Biologic medicines target a protein in the body. This protein helps fight off infections but, in some people, it can damage the cells lining the gut. This can cause gut inflammation in people with IBD, so this medicine can help to reduce symptoms.  

Mercaptopurine: A medicine which reduces the strength of your immune system (immunosuppressant) to reduce inflammation in the gut. 

MRI scan: A painless and radiation-free medical imaging technique. 

Perforated bowel:  A serious medical emergency where a hole or tear develops in the wall of the stomach, small intestine or large intestine.  

Sepsis: Sepsis is a life-threatening condition in which the body responds improperly to an infection. It can be a risk for people with Crohn’s disease, often caused by intestinal complications like abscesses and can also be linked to immunosuppressive treatments or surgery. 

About Guts UK

Guts UK is the national charity for the digestive system and the only UK charity funding research into the whole digestive system.

We provide information and support for people affected by digestive conditions like Crohn’s disease, including a dedicated Helpline.