An intestinal failure success story

“I’m six foot two and my average weight at the time was around nine and a half, or 10 stone. If you look back at old family photos, I'm skin and bone, you know?”

Jon Ashby, 58, is recalling his referral for surgery a little over 10 years ago. Having lived with Crohn's disease of the small intestine for most of his life, he was showing signs of intestinal failure (IF) and was becoming dangerously malnourished.

IF is a debilitating condition, where the gut is unable to absorb the water, nutrients and electrolytes necessary to maintain a healthy existence. As Jon puts it: “No matter how much you can eat, you're just not putting anything on.”

The Princess Grace Hospital, part of HCA Healthcare UK, has spent many years developing and building its dedicated IF service, which launched at the end of 2023, specifically to deal with cases just like Jon’s. Back then however, Jon was fortunate that his local consultant spotted the problem, which had been exacerbated by previous surgery to treat his Crohn’s, which had proved unsuccessful to say the least.

“Back in 2000, I had some surgery which was an absolute disaster,” Jon recalls, “I got MRSA, my bowel split inside me – all sorts of problems. And that was just, the beginning.”

The previous surgery had left Jon with a lot of scarring, which was blocking his small intestine. His consultant could see a potential solution to the problem, but it would take very specific expertise. He had no hesitation in referring Jon to Mr Alastair Windsor and Mr Farooq Rahman, both leading consultants in HCA UK’s Complex GI Centre, and key figures in the Princess Grace Hospital’s IF service. Jon was immediately put at ease.

“When I met Mr Windsor, he gave me the confidence he could do the job,” he says, smiling. “So I felt completely comfortable going into the surgery – I knew I was in safe hands.”

His confidence was well placed. The surgery – a small bowel resection and the removal of adhesions that were blocking the bowel – was successful, but very complex. Jon was fitted with a temporary stoma until his bowel could be reattached, some months later, which meant this could have required a long, and uncomfortable stay in hospital on parenteral nutrition (PN) to ensure his body was getting the right levels of nutrients in the interim.

Luckily for Jon, after a spell at University College London Hospital (UCLH) he was offered the chance to have PN treatment at home with the help of a private home care company. Mindful of the huge impact this can have on the wellbeing of their patients, The Princess Grace Hospital has recently prioritised exactly this service for those with chronic intestinal failure. By partnering with home care providers in this way, they offer patients long-term parenteral support, and treatment in the comfort of their own home. Jon is a shining example of the positive change this can bring to patients.

“It made a massive difference,” he says of his experience. “While you can't knock the care that you're receiving, you just don't want to be there. The clinicians, the surgeons, the nurses, they can only do so much. But until you're back home, back to normal, you don't feel like you’re actually getting better,” he pauses, “properly better.”

The care he received while at home was extensive, but never invasive. “It was one visit a day,” Jon recalls, “and they always came equipped with everything they needed to do the job. We did have different nurses, obviously, but we saw lots of them regularly.” Once Jon was ready for his stoma to be reversed, he had further surgery to in his words, “put it back together again.”

After a successful surgery, the home treatment could stop and Jon’s recovery begin in earnest. While not always easy (“It felt a bit like learning how to walk again,” he says) Jon was able to work from home and gradually make a full return to life over the next three months.

Fast forward a decade, and life looks very different for Jon, who now talks about “managing” his condition, rather than reeling from its effects.

“I’m in contact with Dr Rahman all the time,” he explains. “I know the whole team – they monitor my treatment on a regular basis, so if I have any concerns, I've got an easy point of contact.”

And while some in Jon’s position might be tempted to find somewhere local for check-ups, for him it’s all about having confidence in the healthcare specialists he’s made a connection with.

“A friendly face you can put a name to makes a big difference, right?” he asks, before continuing, “and Dr Rahman knows everything about my complex previous history and current management.”

Jon’s is a story of truly joined-up healthcare. From first referral, through quick and effective complex surgery, to managed home treatment, he’s enjoyed a continuity of care that has eased his journey to a successful recovery.

“I'm not saying I'm going to run the marathon,” Jon laughs, “but I feel healthier than I have in more than 30 years.”