After years in and out of hospital and increasingly alarming diagnoses, I consider myself lucky to be alive today. I’m a 36-year-old mum, and this is how my health deteriorated, resulting in ileostomy surgery in 2023.

I was diagnosed with IBS at the age of 11 and battled in and out of hospitals, seeing doctors and trialling various medicines to get my bowels to work. I fell pregnant with our son, George, in early 2018 and started getting longer periods of time where I wasn’t able to poo. I was around six months pregnant and didn’t pass any bowel movements for 24 days. I couldn’t have any invasive tests as I didn’t want to lose my unborn child. My husband Craig and I sadly lost our first child in 2017 through an unknown cause.

Thankfully, after very strong oral laxatives and enemas, I finally went to the toilet. George was born 10 days early in late August 2018. I continued to battle with my constipation but was unable to go to the hospital or see a doctor as COVID hit.

In early 2021, the frequency of not having bowel movements continued into days and weeks – seven weeks, in fact. I was hospitalized 10-11 times in 2021-22 and given medications usually prescribed to someone needing a colonoscopy. I would have to drink litres and litres of Moviprep/Plenvu, Picolax, Laxido. You name it, I drank it and whatever else had to be given up the other end.

I finally met with a surgeon in the Royal United Hospital, Bath in late 2022 who said my colon was so large and dilated – he described it as a “toxic mega colon” – it needed to be removed. He told me he could remove my small bowel to my rectum, and I’d avoid having to have an ileostomy bag. The surgery took place on 19 December 2022. I was hopeful, as I was still young, that I’d be back on my feet again living a normal life within 4-6 weeks – as the surgeon said.

By 29 December, I was passing stools, wind, and I was fit to go home. Delighted! I was able to celebrate my birthday with Craig and George and our two dogs. Unfortunately, that night I deteriorated and was back in A&E. Nineteen hours on a cold hard chair, all alone. I was taken to a surgical assessment unit, where my surgeon who performed my subtotal colectomy just a few weeks prior, came to see me. They performed a sigmoidoscopy, and unfortunately, due to scar tissue and adhesions, my bowels and rectum were closed shut.

In the early hours of 15 January 2023, I was taken to theatre to have an ileostomy. I rang Craig as, with any major operation, things don’t always go to plan. He rushed in with our son and I kissed them goodbye. George was four at the time and asked if mummy was going to be okay.

I had my operation and was in intensive care for two weeks. Craig and George came to see me every day, but I wasn’t conscious so didn’t know they were there. I finally woke up and felt my tummy. I felt ugly and ashamed. This wasn’t the life I wanted – I thought it would be best if I hopefully passed away so as not to put Craig and George through any more misery.

What kept me going was the fact I wasn’t ready to give up my fight. I was still young, and even if this had happened in my senior years, I have a fantastic and supportive husband and a brave, resilient son who wasn’t ready to leave behind. I feel I stared the grim reaper in the face and won. I was determined to focus on getting better and holding them in my arms again. I mustn’t forget our two dogs either!

After two weeks, I was taken to a ward and had two PICC lines to give me total parenteral nutrition and other medicines. I had sepsis in my central wound and an NG tube draining away stomach contents as the sickness was so severe. I also contracted COVID while on the ward.

By March, I was tolerating some foods and sent home on Mother’s Day. But sadly, 24 hours later, I was back in as my ileostomy stopped working, and stomach contents were coming out of my nose and mouth.

Back in Bath, they confirmed I had mesenteric plexitis. It was found in my colon and was likely to be in my small bowel. They couldn’t do anything further for me, and so I was transferred to University Hospital Southampton.

I was placed on the Intestinal Failure ward, and the consultants there confirmed I had CIPO, Chronic Intestinal Pseudo Obstruction, and Mesenteric Plexitis. There is no cure for either of these conditions.

I went to have a Hickman line into my chest so I could go home on parenteral nutrition (PN) and lead a semi-normal life. Finally, I was discharged from their care in August.

A consultant at Bath told me I wouldn’t live past my 40th birthday as PN isn’t sustainable long term. I’ve now been told that isn’t the case, and my life expectancy is unknown, like everyone’s. So, I am here, and although under my clothes I have a stoma and a central line keeping me alive, nothing and no one will stop me!

During those endless days in hospital, one thing that helped me to feel at home was investing in a camera so I could see and speak to my family. We had one in the lounge, kitchen, and my son’s room. It felt amazing that I could see them no matter the time of day. If I was feeling low, lonely, or going through a difficult moment, I logged in and saw my son’s face light up.

I had no choice in the path I’m going down, but by heck, I’m doing it for me, my family, and above all else, I will keep smiling.