New Beginnings: The Journey to Mitrofanoff Part Two

New Beginnings

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 :)

"I woke up with two catheters coming out of two small stomas from my bladder" - Kerry Greenfield

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by Kerry Greenfield

Kerry Greenfield

About the author

Born with Spina Bifida Occulta and Tethered Cord Syndrome, I became a fulltime wheelchair user as an adult and lost bladder normality. Thanks to my Urology Team at Aintree Hospital, my bladder has been reconstructed with a Mitrofanoff and I now ISC through my abdomen. Sharing my personal experiences; determined not to spend my life incontinent!

Recent Comments

  • Graham Capstick

    Very interesting and fabulously wrote arrival. Iv has verious urological procedures done a bladder extension bowl was used and to Ace procedures a sort of artificial sphincta done by prof Abrahams, having had these procedures I fully empathise and know how I feel they have changed my life, I know I much prefer intermittent catheterisation than having to were incontanence padds, with a end colostomy I have this luxury and couldn't imadgen life incontanence again yes I'd manage iv done it before, but as you said even with spreradik procedures some surgical some not so invasive I'd do the Euro root again 100%. Reading this post was very refreshing esp as I'm having difficultys with my Stoma awaighting reconstructive surgery, I'm getting a wee fed up of hospital apps and the weighting game, esp as I'm weighting father spinal cord Detethering surgery so reading this post has reminded me of the benefits of sticking it out and not being beaten. Having had very similar experiences I know just how brave you have been, fair play and thankyou, Graham V

  • Gemma Caldwell

    Hi how old was u when u had the bladder surgery and how suscess was it as my young daughter needs the same as she is double incontunie. What age do u think is the best age to have it done

  • Kerry

    Hi Gemma, Thanks for reading the post :) in terms of age I was 30 when I had my mitrofanoff done and I've had some revision work on the urethral tract just yesterday due to persistent night leaking. Although I was born with Spina Bifida and had childhood treatment for it I was very very lucky to only have the mildest bladder issues. I didn't even have a Urologist until I was 26. However and this is just my opinion. I believe that the sooner incontinence is got under management the better. I spent only 3 years with it and it really debilitated my life. It did actually get me thinking about what I would have done if I had these problems as a child. Both myself and my mum agree that bladder augmentation including mitrofanoff would be right. But again it's a decision that you have to feel right about and that includes a child having it done as well. It is life changing but for me it was life changing in a positive way even though I will need revision surgery from time to time. If your daughter has any questions to ask please feel free to get in touch or I could talk to you both on Skype Best wishes Kerry

  • Kerry

    Hi Graham Thanks for your comments and sharing your experiences. I'm really glad that you enjoyed and have found the article useful :) I have also had de-tethering surgery twice so good luck with it, I hope it works out well for you. And as you say it's sometimes worth the wait in order to get surgery that will make you feel better and improve your life quality especially where continence is concerned! Keep striving to go forwards __ Best wishes Kerry

  • Tracy Brown

    Hi, my daughter is 11 and on the 17th of June she is having a Mitrofanoff and mace I am so scared is there any advice on how to prepare for this xx

    • SecuriCare_Team

      Hi Tracey, you may find this information useful: best of luck to you and your daughter.

  • Louie Whitmore

    Kerry Mace is now an incredible teacher. Her recovery was astonishing and is appreciated by all the children at the school

  • Sage Jobsis

    Thank you for this very clear and useful reflection on your experience.
    I am preparing for a microfanoff surgery with augmentation of my bladder.

    Can you please let me know, after all is healed and you fell into a regular cath schedule, do you need to cath during the middle of the night? Can you leave a intermittent cath in at night draining into a bag? or what do you do to prevent sleep deprivation?

    I really appreciate your response to my question. If you can,

    Thank you

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