Darren’s story…

I was determined not to let my illness hold me back…

I am 52 years old and was diagnosed with Crohn’s disease as a teenager. Until then I had never heard of it and thought my world was coming to an end. I recall pains in the stomach, feeling lightheaded and not having much of an appetite. There was hardly any information or awareness at the time.

I was started on steroids and had quite a few stays in hospital. I remember Dr Morris, my consultant, being very supportive. He wrote a letter to my school when I was due to sit GCSEs to reduce stress levels. Time ticked on. I remained on medication and after my GCSEs I went on to secure three-year apprenticeship as an electrician. I was determined not to let my illness hold me back. I recall odd days off, with an admission once. As a 16-year-old I recall being concerned about eating. At the time I drank pints of milk, as it was thought to be good for Crohn's, while my mates drank pop!

In 1994, my care was moved to the new hospital and team in Bridgend (The Princess of Wales). Thankfully, I always see the same doctor as it’s disconcerting seeing different people and having to repeat my history. The same year I started a new job travelling nationwide, married my wife in 1998, our first son was born in 1996 and our second in 1999. I recall being fatigued but put this down to my physical job, long hours and a busy family life.

In 2003, I had my first resection surgery, which was a success, although it was upsetting for my family and young sons. I was told the operation may not cure Crohn’s and that it could reappear in another part of the bowel. Lo and behold, it did, meaning further surgery in 2007. I’ve had a mixture of biological treatments, ranging from infusions to injection pens. All rather daunting but I grew used to them. Over the ten years I was on them I had very few problems.

In 2022, the meds weren't working. I was unwell, spent more time in hospital, and generally felt very run down. After a lot of juggling I was put on antibiotics overnight in hospital but could go home during the day. I was put on bowel rest, having a liquid diet for four weeks which was hard.

I was back and forth for check-ups at the hospital and in 2024 they were concerned about my weight loss. Before I knew it, I was admitted to hospital. In April 2024 the plan was to remove the small bowel and the possibility of being fed by a tube which had been mentioned before but I wasn’t sure what that was all about! Due to the weight loss, I had parenteral nutrition (PN) for two weeks prior to my surgery. Sadly, I had numerous infections in the line, each having to be replaced. I had an 8-hour operation at the end of April 2024. They removed my small bowel (leaving about 50cm) and my gallbladder and created an ileostomy and a second one from which mucus discharges. I was in hospital for my 50^th birthday which wasn’t much fun.

I was having a large output from my stoma and everyone was keen to reduce the 7-litre losses. PN was mentioned but sounded scary. Thankfully, I changed hospitals and their explanation boosted my confidence. They explained I could manage it at home once trained – life didn’t sound so frightening then.

Cardiff had to reset everything: they changed my IV fluids, changed my central line, and took a fresh look at what would work best for me. I had a Broviac catheter at the end of June. Thankfully the outcome was better than I was expecting. It is fascinating how the bags can be made up to suit the individual’s needs. I was to have 4.5 litres, seven nights a week. I was curious about the weight of the feed, rucksack and pump which came out at 7kg. I was trained to manage my central line. It is scary trying to keep the line clean and doing the different procedures. Once the nurses were happy I could do it myself, I did it on the ward.

You need to remember all the items to connect up and then to disconnect, along with ensuring you have enough supplies ready for the following weeks.

My doctors allow me to have snacks. At first, my wife found it harder than me to deal with the idea that I wasn't allowed any food at all. The hardest part for me was only being allowed 1 litre of fluids per day. Adjusting to what is seen by many as normal eating and drinking is difficult.

There was a plan made for me to have my stoma reversed in the hope of reducing my PN volume along with reducing nights on PN, both of which would hopefully improve my quality of life. The operation was a success and I have 45cm of small bowel. My output has reduced along with the number of trips I have to make to the toilet. My PN has also been reduced from 4.5L to 2L, and I only feed on alternate nights – plus they are no longer compounded bags that need to be refrigerated.

HAN awareness week is about ‘the SEEN and the UNSEEN’. The list for unseen outweighs weighs the seen. What people see is a normal healthy person. What is unseen is the amount of medical supplies needed, storage for all of it (sometimes including a big medical fridge to keep the bags in), the preparation time to connect up or disconnect. The emotional roller coaster isn’t a pleasure to ride – it affects everyone in your family.

I choose to run my feeds at night as I believe carrying the rucksack restricts what I can do, and it’s not fun being out with strangers looking at you wearing a rucksack and a line coming out of it. I know I shouldn’t think this way but it’s there in the back of my mind. However PN has given me back my strength and contributed to a quality of life I never expected.