Intestinal Failure
Updated: Feb 14, 2025
Intestinal Failure Unit - Salford Royal Hospital
Imagine that instead of sitting down to your dinner in the evening, you had to plug yourself in for a 12-hour IV infusion to get all your nutrients. Well, for those with intestinal failure, either short term or long term, that’s reality.
Until I began the research for this story, I’d never really heard of intestinal failure. I mean I could guess what it is - unsurprisingly I’m aware of what an intestine is and believe it or not the word ‘failure’ is in my vocabulary, but I didn’t know it as a condition at all.
As it turns out, I’m not at all the only one. One of the main things I quickly learnt from my interviewees is that it’s a condition lacking awareness, known in fact as the ‘forgotten organ failure.’ I hope this blog can help with that.
To explain what intestinal failure is, I’m going to introduce you to my first interviewee. Meet Cathy Cawley, a lead nurse in the intestinal failure unit at Salford Royal hospital – or to put it simply, an intestinal failure expert. In the video below she explained to me what intestinal failure is.
Transcript:
“So intestinal failure is when there is an interruption to your digestive system. Most of your nutrition is absorbed within your small intestine.
“If that isn’t working, for one reason, you’re going to have intestinal failure.
“There can be different reasons why somebody may have intestinal failure.
“It could a be loss of blood supply to the intestine, it could be that the lining of the intestine doesn’t work as it should, it could be that there’s complex Crohn's where a patient has had numerous parts of their small intestines removed due to surgery.”
While Cathy described it clearly and calmly, if it isn’t treated properly intestinal failure can be fatal, because if your body isn’t getting the nutrients it needs, it won’t have anything to run on.
However, Cathy made it clear that this is a rare condition that doesn’t affect large numbers of people. She didn’t want to scare people and neither do I – so yes it’s a serious condition, but please don't worry about it.
For some who come to Cathy’s department, they’re coming as a last resort to save their life. The process of parenteral nutrition (feeding directly into the bloodstream), is the main solution to intestinal failure and has to be done very carefully.
So even if a patient has the condition in the short term they may well still require hospital admission.
However, for some patients the condition is a long-term reality, and they can learn to set up parenteral nutrition in their homes to get the best quality of life possible.
Meet Carolyn Wheatley MBE...
Carolyn herself has been on parenteral nutrition for over 40 years, so there are few people more qualified to talk about it.
Not only that, but for over 40 years, she’s worked with PINNT, a charity that supports people on artificial nutrition, and she is an executive committee member for the charity.
You may have also noticed the three letters after her name, and after 40 years of work I can’t think of anybody who deserves it more.
Carolyn told me about her experience with intestinal failure.
“Reaching the diagnosis of intestinal failure was a very long journey for me.
“I started out with lots of bowel problems, distended stomach, sickness, diarrhoea, not being able to tolerate food and drink, losing weight, becoming very fatigued, unable to go to school.
“Life in general was a struggle, but there was no explanation. I was a young child, effectively, I felt blamed for being ill and I needed to do something about it.
“Eventually I was transferred to a centre of excellence who were able to offer me this new treatment, which was parenteral nutrition. Never heard of it before, didn't really understand what that what it entailed, but just was grateful for an opportunity to get well.
“So once I got the parenteral nutrition started and I'd received my diagnosis of intestinal failure due to motility disorder things started to make sense, and I could see light at the end of the tunnel.”
Transcript:
"The hardest part of having intestinal failure is it's living a new life.
"Everything is controlled for me around a 12-hour infusion every night and people say it's easy because it's overnight - well I don't sleep for 12 hours every night."
With Carolyn having such a wealth of knowledge about intestinal failure, both from her own experience and her charity work, I asked her what advice she has for those who may be going through it, either in the short or long term.
“If anyone finds themself with intestinal failure, the main thing to do is ask as many questions as possible.
“Speak to your healthcare professionals. If it becomes long term and you end up going home on parenteral nutrition, find support groups who can help you find like minded people who can give you the reassurance and the confidence.
“You're never alone, but you are alone if you don't identify the right people to talk to, because it is possible to live a good quality of life, you just need to work out how to do it.”
It wasn’t random that I interviewed both Cathy and Carolyn for this story.
A couple of weeks back Salford Royal and PINNT held their first ever ‘1F Intestinal Failure Awareness Day’ together in the hospital.
Both the team in the intestinal failure unit at Salford Royal and the charity are really trying to raise awareness for the condition – the “unknown organ failure,” because it is just so unheard of, and it’s so important.
So, I hope this blog has done its part to raise awareness around intestinal failure, and if you’d like to learn more I will leave links to the Northern Care Alliance intestinal failure page and PINNT below, so you can check them out yourself – and please do.
PINNT - https://pinnt.com/Home.aspx
NCA NHS intestinal failure unit - https://www.northerncarealliance.nhs.uk/our-services/intestinal-failure-unit/intestinal-failure-unit-about-us
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