Catheterisation using a Mitrofanoff by David, 25

David (Hypermobility real story)

“I have a few different conditions, the most serious being urology related which started from birth. I also have a form of hypermobility called Ehrless-Danlos syndrome, which results in loose collagen under the skin and can make the skin stretchy and double jointed. The urology and hypermobility conditions do cross over quite a bit and can result in problems for each other.”

“My form of hypermobility is quite rare and causes problems with my bladder because the skin is weak and the kidneys can move out of place. Pressure on my bladder caused adiverticulum when I was three years old and, as a result, I needed four operations during the summer before I started primary school and had the ureter reimplanted at the same time.”

The Mitrofanoff procedure

“When I was eight years old, I was one of the first people in the UK to have a Mitrofanoff catheter fitted (the Mitrofanoff procedure creates a channel into the bladder through which a thin, plastic tube, known as a catheter, can be inserted to empty the bladder of urine, instead of passing urine through the urethra).

“My appendix was used for the channel, which goes from outside the skin into my bladder. I lubricate the catheter and it goes through the stoma (hole in the skin) on my right hip and into the bladder to empty it. I can pass urine normally but doing this clears the excess, which would otherwise become stagnated in the bladder.

“I had the Mitrofanoff procedure because excess pressure had built up in my bladder as it wasn't emptying to an acceptable level. This was the biggest operation I’ve had during my life and I stayed in GOSH for a month in total. Afterwards, specialist nurses taught me to use the catheters and I remember visiting GOSH during school holidays to practice using them properly so I could do it myself.

“Throughout my life I’ve had various kidney and urine issues, including two sets of kidney stones and something known as acute spontaneous bacterial peritonitis, which is a type of blood infection. However, I’ve had fewer infections since I had my left kidney removed three years ago.”

Memories of GOSH

“GOSH has kept me alive many times and I’ve always felt in good hands. I was looked after really well, the level of care is incredible. I struck up a good rapport with all the doctors and nurses and cleaning staff, everyone is only too keen to help. Staff are great at distracting you from what’s happening and it never felt overly clinical, which I think is really important when you’re young. There just seems to be a really nice ethos here.”

“I think, because I had a lot of problems from a very young age, coming to hospital didn’t faze me as I got older. I also have a sister who is two years older than me and it really helped when I had to go to hospital. She came to a lot of my appointments and really looked after me.”

Transition to adult care

“Since I turned 18, I no longer go to GOSH and I’m now under the care of University College London Hospital (UCLH). I never felt rushed, the transition to adult care just happened with ease. Once I moved to UCLH, my new consultant was in contact with my GOSH consultant so there was never a problem with not having the right notes or anything.

“It’s definitely a reality check moving to an adult care hospital. Outpatient appointments don’t feel that different but if you need surgery and are staying on a ward you can tell the difference. I was used to being around other children at GOSH but at UCLH there’s a mix of adults of all ages.

“I go to UCLH once a year for a routine check-up but it sometimes it’s every six months if something doesn’t feel quite right. At the moment, everything is OK urology wise. However, if that changes I may have to consider dialysis but I want to try and avoid that if possible.

“I still take regular medication but I’ve tried to limit this as I’ve become more immune to a number of antibiotics over the years. I still take a strong form of painkiller sometimes when I experience a lot of discomfort.”

Young People’s Forum

“I got involved in the Young People's Forum at GOSH in July 2013 after seeing it on social media. I was accepted soon after I applied and so far it’s been a really great experience. The group meet every six weeks, for a one-day session, where we discuss a wide range of things. For example, we were recently consulted on potential new gowns for patients to wear during theatre and someone came in to demonstrate the different designs. We also developed a welcome pack for new patients, which involved us looking at the wording and the colour schemes.

“I really enjoy being part of the Young People’s Forum, everyone’s really open and we can talk to each other about anything. We’ve all been through similar experiences with our health problems and I’ve already made some really good friends.

“I want to do as much voluntary work as I can and, as well as the Young People’s Forum, I recently got involved with Kidney Research as a Community Champion. The role means I’ll be helping at fundraising events and going to schools to give talks about kidneys.”

Looking forward

“I’ve noticed my condition affects me more now than it did when I was younger. I studied Business and Economics at university and really enjoyed it, although I had to take some time off due to illness. I graduated in summer 2012 and the following March I got a graduate job in the City, although unfortunately I had to leave shortly after as I became quite ill. The hypermobility makes me very tired and that’s probably affected me the most recently. In my time off, though, I’ve been doing some freelance writing which I’ve enjoyed.

“As I’ve got older, I’ve become more aware of what’s happened and I’ve almost taken a step back to say; ‘hold on – I’ve had over 30 operations and maybe I need to take it a bit easy’. During my time at GOSH, I felt quite safe because my parents were there and could take over, but when you get older you have to take a more active role in your own health. I’m 25 now and my aim is to get back into work and get my own place.”