Working with NHS England, Crohn’s & Colitis UK are developing case studies highlighting themes of our 'It Takes Guts’ campaign, which helps people find the right words to start conversations that really matter, and the 2019 IBD Standards, which define what high quality IBD care looks like.
James’ story: Shared decision-making
This case study showcases the importance of shared decision-making, where people with Crohn’s or Colitis are enabled to consider their options and discuss the risks, benefits and consequences with their doctor when deciding on their treatment and care.
James had problems with his bowels for a number of years, with cycles of diarrhoea and constipation, sometimes with bleeding. He had visited the GP a couple of times but following a consultation, medical history and physical examination neither of them thought it was Inflammatory Bowel Disease (IBD). James subsequently developed a perianal abscess which was drained under general anaesthetic.
Following this, one of the consultants advised that he ask his GP for a faecal calprotectin test. A couple of months went by and his abscess later developed into a fistula, which the consultant thought seemed a little odd for someone without Inflammatory Bowel Disease (IBD).
James had the test, and his markers were raised, so he was referred to a gastroenterologist. Following a colonoscopy, James was diagnosed with Crohn’s, one of the two main forms of IBD.
Shared Decision Making
This is when people are supported to a) understand the care, treatment and support options available and the risks, benefits and consequences of those options, and b) make a decision about a preferred course of action, based on evidence-based, good quality information and their personal preferences.
Since his diagnosis, James has experienced some really good examples of shared decision-making and personalised care and support, mainly around his fistula surgery. James’ colorectal surgeon took a personalised approach and involved James in discussions and decisions about his treatment and care.
There are a number of different surgical options for James’ condition, such as a conservative approach which might involve a series of procedures, or a bigger operation.
The surgeon outlined these to James including the pros and cons, and they agreed a surgical plan which they were both happy with.
James was presented with 2-3 options for his first operation, one of which was a fistulotomy, which involves cutting along the whole length of the fistula to open it up so it heals as a flat scar.
James had read about the surgical options for fistulas in the Crohn’s & Colitis UK information booklet and decided he didn’t want this option and so they went with a seton procedure.
A seton is a piece of surgical thread that's left in the fistula indefinitely to keep it open. This allows it to drain, thus preventing the abscess reforming, and helps it heal. As the seton was not curative, the decision was then made together to go on the biologic medicine infliximab (James is also on azathioprine).
Benefits of the personalised approach
James’ consultant also took into account his personal circumstances, especially his university studies. For example, he scheduled one operation to fit in with the summer holidays as James felt this would give him more time to recover.
The surgeon was also prepared to postpone less urgent surgery to fit in with James’ studies. He also ensured that the surgery had the maximum impact to reduce the disruption to James’ studies.
The surgeon drew on his experience and knowledge to devise a plan with James that accommodated James’ personal circumstances as well as meeting his clinical needs.
The only thing James feels could have been done differently is more information about aftercare. He wasn’t provided with any information about what to expect after his operation, or about the medication he was prescribed.
The care he received before and during his treatment was spot on, but it would have helped him to have more information about managing his recovery from treatment. About a month or so ago, James had a second operation.
Originally James decided he wanted the seton removed, but after further pre-operative discussions with his surgeon, he decided to have a fistulotomy.
James found the shared decision-making empowering especially as he lives with a chronic condition that can’t be cured and can be difficult to manage.
It’s less like you’re being controlled by the problem and more like you’re in control.
James was able to discuss timings around his surgery with his consultant, meaning he could plan ahead and worried less as he knew what to expect post-operatively.
He also feels that he was able to cope with the operation and recovery better because he chose to have it and was prepared for it.
He’s happy with the outcome as the fistula tract has since healed.
James’s story was captured by Crohn’s & Colitis UK working with NHS England and Improvement. Thanks to James for sharing his experience.