New Beginnings: The Journey to Mitrofanoff Part Two

My bladder reconstruction surgery including Mitrofanoff

In this blog, I’m going to talk about my surgery - bladder reconstruction including mitrofanoff - a tube made of either small bowel or appendix (depending on which is most suitable) that runs from the bladder to an abdominal stoma. I talked more about my reasons for having this procedure in my previous blog for SecuriCare. My surgery took place under the excellent care of Consultant Urologist Mr Andrew Baird and his inpatient and outpatient teams at Aintree Hospital.

13: Unlucky for some but not for me!

I consider 13 a lucky number medically for me. I once had a very successful surgery on Friday 13th and my bladder surgery was planned to take place on March 20th 2013 so I took this as a good sign!

On the morning of the surgery I was very nervous. Thankfully, my sister and the nurses from the urology ward calmed me down. I remember a nurse, Liz, reassuringly saying to me, “Kerry this is going to change your life” and I’m so glad I listened because it really did.

Just before I was anaesthetised I remember asking Mr Baird to, “please give me my life back.” He promised he would do his very best and as soon as I came round from surgery I knew it had worked.

Post-surgery bladder

I woke up with two catheters coming out of two small stomas from my bladder. They drained urine into bags on either side of my bed; one was a supra-pubic catheter and the other was the mitrofanoff catheter. The supra-pubic catheter is used to support the newly created bladder and mitrofanoff in healing.

The catheters stay in place like this for approximately 6 weeks after the surgery before they are both removed over staggered days. During this period I did a daily flush of the catheters and bladder with saline solution to keep everything clean. My mum really helped me through this as being a wheelchair user added another challenge to my recovery.

I stayed on the ward where I was very well looked after for just under a week.

What to do if your catheter pops out after surgery

Something worth remembering for people who may be having this surgery is that if one of the catheters unexpectedly pops out during this 6-week period, don’t panic! Remember that, as long as one catheter is still in place and draining urine, it’s probably ok – simply contact your urology team or, if it happens outside of regular hours and you feel very concerned (particularly if it appears neither catheter is working), go to your A&E Department. I went to Aintree Hospital’s A&E twice during my recovery for these types of issues and both times they were excellent and very sensitive to the specialist nature of the surgery I had had done.

A baby bladder

6 weeks later, it was time for my bladder to “go it alone!” When the catheters were taken out out, my bladder immediately leaked. I panicked – had the surgery failed?

It hadn’t! The new bladder actually has to grow and be re-trained to function in a healthy way, much like a baby’s would. At first I had to empty it every 90 minutes in the day and 2-3 hourly at night. It was exhausting and took perseverance and the full support of the outpatient urology team. Mr Baird plus specialist nurses Anne and Steve really were - and still are - only a phone call away when I need support. This really was invaluable to my recovery.

My Mitrofanoff was created using my small bowel and it simply feels like pushing a catheter through a tube until it comes to what we lovingly refer to as a ‘cat-flap’… although maybe ‘cath-flap’ would be more suitable! Push it through this and you’re into the bladder. It then drains and the catheter is disposed of when finished.

It took a good three to six months for it all to fully recover. The routine I established was to do my first catheter at 7am then catheterise every 3 hours in the day - or more if I feel the need to - and do my last one at 11pm. I still stick to this routine.

The long-term result

There have been so many benefits from this surgery for me – I have no regrets at all and I remain committed to maintaining as much bladder health as possible. I do have to have some revision work done on my urethral tract this November, as last year my bladder started leaking again at night. However, I would have revision work done every year if it meant having a functioning bladder :)