Jessica Combe - My IBD Story

I am Jessie, I was diagnosed with Crohn’s disease in April 2022 after years of symptoms, A&E visits, and GP appointments. Not knowing what was taking over my body for about seven years, I was so happy to finally have a name for my condition. I am proud that I kept listening to my body when I knew something wasn’t right and kept pushing for answers.

I was vomiting a lot when I was at university and worked in a garage around 2015/16. I remember not being able to stand up one day and went home vomiting. I had no idea what was going on, and thought it might be food poisoning or a viral bug. But the vomiting kept on happening each month or more so I was going back and forth to the GP for years and ended up in hospital so many times with vomiting and pain. In 2017 I had a skin condition called erythema nodosum and the doctor said he hadn’t seen that in 10 years. Which I thought was a red flag! I had blood tests done but nothing else and he said it should go away by itself, but I had it for around four months. I could barely walk, my ankles were swollen and I had what I described as hot round golf balls all over the shins of my legs. It was so painful and sore. 

For two years around 2020 and 2021 the GP was telling me I had endometriosis. I was going back and forth to them looking for answers. I remember seeing blood in my stool for the first time in 2020 and it really scared me. I was prescribed the contraceptive pill which they said would apparently ‘help’ my periods. I said it wasn’t normal to be vomiting for over eight hours a day, unable to walk, curled up in pain. I was told so many times from different health professionals that some people have ‘worse’ periods than others.

I was sent for a laparoscopy, but no endometriosis was found. I was so heartbroken as I really hoped this would hold the answers to all my questions. I was told I had a loaded bowel and to go back to my GP. Days after this I was vomiting, in pain and had blood in my stool again, but still not knowing it was Crohn’s disease.

Being misdiagnosed really took a hold on my mental health. Every time I was flaring and not knowing why, I was in such a dark place and felt helpless. Again I went back to the GP in January 2022 and talked more about my symptoms. I was told it was irritable bowel syndrome (IBS) and to add more fibre into my diet. I disagreed as with IBS I wouldn’t be vomiting for eight hours a day! They did a stool test but they said that it came back normal but I don’t know what they tested for when they did that. They also gave me Fybogel to drink to add fibre to my diet. I was still getting blood in my stool for months.

I experienced a massive flare up where I ended up in A&E twice in March 2022 with really bad vomiting and symptoms. Looking back I was so tiny, but I didn’t realise at the time how underweight I was. I was eating fruit, seeds, salads, peppers, everything which is hard to digest when you have strictures (narrowing in your bowel), which I didn’t know about then.

I met a lovely surgeon while in A&E who said he would make me better. I felt I finally had someone who was listening and wanted to help me find answers. He booked me in for a CT scan and a stool sample test for inflammation. I also had a colonoscopy, all in April 2022. I then had an MRI in June then my major surgery in August 2022.

I feel like I was in a constant flare for many years. There have been so many times where I would be vomiting for eight hours a day and in so much pain and I didn’t have any idea what was happening to my body. It was very scary! My symptoms showed themselves in a number of ways; vomiting, nausea, crippling stomach pains, blood in my stool, constipation, low energy, fatigue, no appetite, weight loss, eye problems, mouth sores, and diarrhoea. This disease literally takes over your body. I was bed-bound, needing help getting around, vomiting, crying, and feeling so down, wondering what on earth was happening to me. 

I feel that my symptoms have taken over my life for so many years without me even knowing it was Crohn's disease. Not only has it affected my life but my family’s life too! It is a horrible disease that I didn’t know much about until last year. Before getting diagnosed I always had a thought in the back of my head before going places “what if I’m sick”. That always affected me as it would always come on without warning.

I haven’t been on medication, as I was told by the gastro doctors that I needed surgery as my bowel was so diseased. As I mentioned, in August 2022 I had bowel surgery for my Crohn’s disease. I had a right hemicolectomy where they took around 25cm of my bowel away. The surgery itself went really well, but after surgery, I became very unwell. I experienced ileus, where my bowel stopped working and I had a nasogastric (NG) tube fitted, which was terrifying. I had spiking temperatures and developed sepsis, which was so frightening, and had to have a drain fitted via a CT scan whilst awake. That was the worst pain. Plus lots of IV antibiotics. I also had a PICC line fitted for liquid nutrition as I couldn’t eat or drink anything due to my bowel going into ileus. By this point I hadn’t had any solid food for three months as two months prior to surgery I was on a special liquid diet of Modulen as I was unable to eat. I was vomiting a lot and had to learn to walk again.

I also found out they took away my appendix as they found a tiny, tiny tumour! Recovery from surgery was difficult and long, I needed a lot of help doing things like showering and moving around, and making cups of tea, but I had my amazing family with me and looking after me! I am lucky to have such amazing support from my family. They were by my side every day while in hospital.

Last year with all my hospital appointments was a lot and I had to take six months off work due to my surgery and recovery and from being on a liquid diet. IBD not only affects your physical health it affects your mental health too. Take every day as it comes, they can all look very different from one day to the next. Before I got diagnosed I always said it came on without any warning! That’s the scariest part about it. One minute you could feel completely fine then the next I couldn’t move and would need help getting around.

Luckily I have started to feel the best I have in years and hope this is the start of a happier, healthier me! I will continue to spread awareness of this crippling disease and be thankful for this amazing community. You can follow me on Instagram and TikTok @jessiecrohnsjourney. Thank you for reading. I hope you are all well.