These questions were presented at the London Patient Education Day on 23 March 2019 by Renee Holmes (Chairperson) and answered by Dan Wood (Patron, and Consultant Urologist Surgeon, UCLH) and Sharon Fillingham (Adult Nurse Advisor and Clinical Nurse Specialist, UCLH).
You can find further information on our website. Many thanks to members of our closed Facebook group who provided these questions. You can sign up to this group by clicking on the Facebook icon on our website.
1. Is there anything, in particular, I will need post op?
DW: A contact number from the hospital to call if you are worried about anything.
SF: And know where the closest A&E department is in case you have a problem in the night. Also, know what is an emergency situation – if you are having trouble doing a washout that’s probably not A&E, but if the indwelling tubes have fallen out or are not draining at all that is A&E (and please stop drinking unless you are sure it’s dehydration).
RH: Information is power, so learn as much as you can and have a plan so you know what to do in different situations. This is your journey to independence.
2. How long after the surgery can you start using the Mitrofanoff?
SF: It depends on the surgeon and hospital, but 6 weeks for adults and 3-4 weeks for children.
3. What should you do if you have trouble getting a catheter in?
SF: Try to relax – there is a correlation between firmness of tummy muscles and ease of insertion! Try more lubrication or a change of position (eg lying down). Have a range of different catheters and sizes to try, and once you get a catheter in leave it indwelling (days or even hours – call for advice) with a spigot at the end. Anecdotal evidence that a big meal or tenseness/pain in tummy doesn’t help.
DW: I think you have to ask (and you should know) what is the state of your urethra – if this is still open then not such an issue (eg an A&E doctor can then insert a catheter through the urethra), if it has been closed then a more urgent situation.
4. Does having a neobladder cause an increase to mucus?
SF: Yes – bowel tissue is designed to produce mucus which helps in the bowel but can cause issues in a new or augmented bladder, which is why it’s important to get rid of it through the catheters and with bladder washouts.
5. What can you do if the navel leaks at the Mitrofanoff site?
SF: Try a stopper. It depends on the amount of and reason for leakage.
DW: Are you catheterising enough? Are you doing the straw trick? Is it urine or mucus coming out? If mucus perhaps a small dressing. If it’s more than that there are a series of tests that can work out if it’s leaking from the valve or perhaps the bladder is too high a pressure.
RH: You can get latex-free plasters on prescription. The ones I use are Colomate Minicaps (Peak Medical).
6. Any tips to make the recovery period any easier?
DW: Netflix! Seriously, have a plan and if worried have the contact numbers ready.
7. Does anyone regret having the surgery and why?
RH: A vast majority of our members would say the operation has benefitted them. Like any operation there may be complications, and a Mitrofanoff may not be the best solution for everyone. As always, speak to your doctor and get as much information as possible.
8. Is it normal for the Mitrof to bleed and for there to be quite a bit of blood?
DW: Yes and no. A bit of blood is for some liveable with, but do tell somebody about it.
SF: A bit of blood is normal for some, but it does depend on how much. If there is lots, get on the phone.
9. Is it normal for all children to be in HDU after the surgery?
DW: It depends on the hospital and the surgeon, they will each have their own protocols.
10. What's the average waiting time to have the surgery?
DW: Again, it depends on the region, the surgeon, and the reasons for having the surgery.