Chris Cole has seen hospitals as his home since he was three months old. Originally from Frimley, 29-year-old Chris has his own flat in Southsea which he rarely visits due to spending his days inside ward E3 at Queen Alexandra Hospital (QA) receiving treatment for a rare form of Hirschsprung's disease.
Hirschsprung's disease is a condition that causes faeces to become stuck in the bowels. Normally the bowel continuously squeezes and relaxes to push faeces along, a process controlled by your nervous system. In Hirschsprung's disease, the nerves that control this movement are missing, which means faeces can build up and form a blockage. This can cause severe constipation and occasionally lead to a serious bowel infection called enterocolitis if it's not identified and treated early on.
Chris suffers from enterocolitis, as well as intestinal pseudo-obstruction; other rare condition with symptoms similar to those caused by a blockage or obstruction of the intestines. He also has gastroparesis, which is a long-term chronic condition where the stomach can't empty itself in the normal way.
Chris, who has run his own Digital Marketing business from his hospital bed for the last few years, says: “I’ve been ill since I was a baby. Since I was three months old I’ve been in and out of hospitals, having operations to find out what was wrong.
“They finally discovered I had a rare form of a rare condition and three other illnesses that make up my intestinal failure. All together I’ve been coming in and out of QA for the last twelve to thirteen years, and I’ve been here nonstop for the past three years.”
It isn’t always easy for Chris both physically and mentally. The longest that Chris can usually leave his ward is a maximum of two hours. However, this year, thanks to the QA at Home team, Chris was able to celebrate his birthday at home.
Chris explains: “It was my birthday on 20th April, and Josh the Bed Manager found out about it. He said they were going to see what they could do, and between him, Charlotte Winsor the Ward Manager and the rest of the team they managed to get me out of the hospital for a longer period of time.
“This meant I didn’t have to sit in hospital on my birthday, instead I got to see my friends and family. The QA at Home team worked with the pharmacy so that they could give me my medication at my house. All in all it was about six hours away from the hospital, which was amazing. It was nice to not be a patient for a few hours.”
This incredible act of compassion, from all of the team, was unforgettable for Chris, and allowed him to do what he enjoys most – spending quality time with his loved ones away from his hospital room.
The future for Chris is now firmly focussed on receiving a multi-organ transplant, which would allow him to live a more normal life away from the hospital. This 26-hour long operation would replace Chris’s stomach, spleen, pancreas, gallbladder, small bowel, large bowel and stomach wall.
Chris says: “Until you go through something where you have to be in hospital for a long time, I can’t really explain what it feels like. You just don’t see the light at the end of the tunnel. But with that day at home, it felt like I could forget about hospital for a few hours and think about what my life would be like outside of hospital.”
“I’m at risk of a lot of things at the moment, so my future is trying to be healthy enough to have this transplant. When you’re in hospital, you’re scared and nervous. You look outside or you look at social media and see everyone going to the pub or having a barbeque, and it’s not easy. The team here make me as comfortable as possible, and they help me mentally by coming in and speaking to me. There’s mutual respect between me and the E3 team. They’re very supportive, and they are a huge part of my support network. It’s like I have my friends around me.”
“The staff go above and beyond for me, but they do that for every patient here. I’ve always said that the E3 ward in particular is just brilliant for support, compassion, empathy, individuality and the way I’m looked after. I’ve stayed in twenty to thirty hospitals, and this is the best ward I’ve ever been on. I love these guys to pieces!”