Nikki Matthews - My IBD Story

I am Nikki a 33-year-old, wife and mother of two from the New Forest, UK and I have Crohn's disease. My symptoms first started at 14-years-old. I picked up a bug on a family holiday abroad and just never got better. I had diarrhoea, blood loss, fatigue, sickness, horrific tummy pains and extreme weight loss. All whilst I was trying to study and take my GCSE’s. My mum took me back and forth to the doctors over and over again but they couldn’t get to the bottom of what was going on. I was told I had a dairy allergy, then asked if I could be pregnant, taking laxatives or making myself sick. 

I made it to college and after being there for five weeks I had an incredibly painful lump near my bum. I went back to the doctors again and at this point they had a look and gave me some antibiotics. They didn’t touch it and a week later I couldn’t walk. I went back to the doctors and they urged me to go to A&E immediately.

I had a perianal abscess. This was operated on and then packed every day for three months. At 16-years-old having an abscess was bad enough but then having to have it packed every morning by a medical professional was soul destroying. The three months came to an end, and that evening I felt a lump on the other side. The whole time it had been pushed to the other side. After another trip to the hospital, another operation and setons put in place, my other symptoms were taken seriously and I was diagnosed with Crohn’s disease.

Medications started, I was originally put on steroids, then Pentasa, a 5-ASAS medication, immunosuppressant azathioprine, biologic medications infliximab and Humira and now I am on vedolizumab, another biologic medication. I have also had B12 injections every six weeks since I was diagnosed.

From 20 to 31-years-old, I was going ok. I had flares but my medication was changed and we got it back under control. I had my two children via caesarean and lived a fairly normal life. Some foods upset me, sometimes I was wiped out, sometimes I had to cancel plans but I was good. I was OK. 

Then March 2022 happened. I noticed I was in pain, a lot! Struggling to eat much, my symptoms were getting worse. It was time for the dreaded colonoscopy and this was booked. Results showed two strictures in my colon, so narrow the scope couldn’t go through the second. Next up was a CT scan, which confirmed the two strictures. My consultant recommended we doubled the dose of my medication for four months and then redo both tests to see if it had helped. Unfortunately, it hadn’t and I was booked in for surgery.

On March 16th 2023 I was taken down to theatre for a resection, to remove the two strictures and the severely damaged sections of my colon and directly join together the healthy ends of my small intestine and the large intestine. Unfortunately, my spleen was nicked during the procedure and it progressed from keyhole to open surgery. I knew there was a chance of waking up with an ileostomy but I was young and fit. My Crohn's disease wasn’t active, it was scar tissue causing the problems. So, it should be, although major surgery, fairly straightforward. I woke up from surgery with a huge wound but no stoma. 

The next six days were a blur. I was in so much pain I could barely breathe. My obs were not good and I was coming out with bruises all over my limbs. I had two CT scans and it was confirmed I had sepsis and it was leaking where my colon had been stitched back together. I was very very unwell. 

I was taken back down to theatre within two hours for emergency surgery. This time, it being more likely I would wake up with an ileostomy.

I woke up in the ICU 25 hours later with 17 various tubes and drips coming out of me. But I was out of pain…ICU pain killers will do that!  At this point I was seven days into my hospital stay, from there I had various infections, including pneumonia and was in hospital for a total of 32 days. The longest 32 days of my life. 

Following my time in hospital, I'm trying to move on with life to embrace my new body and educate others about stomas, inflammatory bowel disease (IBD) and invisible illness. I’m not ok all the time but I will come out the other side, stronger and braver than I ever was before.

I’m sharing my story because I want to help people understand IBD, to not be ashamed or embarrassed. My advice for anyone who has recently been diagnosed, would be to rest when you feel you need to, take each day as it comes and life will get better again. You will feel like you again. I wish when I was diagnosed there were more places I could go and read stories of people living normal lives. During the last year Crohn’s disease has definitely been in the driving seat for me, but the 11 years before that, I was. It’s my turn again soon. 

You can connect with me on Instagram @jonesvscrohns.