New Beginnings: The Journey to Mitrofanoff Part Two
Recent Comments
- 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: https://urostomyassociation.org.uk/information/mitrofanoff/ 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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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