What is a Mitrofanoff? 

A Mitrofanoff is a surgical procedure that creates a continent channel between the bladder and the outside of the abdominal wall.

The Mitrofanoff procedure is also called an appendicovesicostomy, or a continent urinary diversion.  It is not commonly well known amoung general practioners due to the relatively small number of patients who have had this proceedure in Australasia.  It was named after Paediatric Consultant Urologist, Profesor Paul Mitrofanoff whose invention revolutionized management of urinary continence in patients.  This creative solution was particularly life changing for children who were able to have an alternative to a leg bag or external pouch.

A Mitrofanoff allows a person to empty their bladder with a catheter via a small and discrete opening, called a stoma, located on their abdomen.  It is typically required when someone cannot empty their bladder adequately. The Mitrofanoff can offer a temporary or long-term solution, giving time for possible recovery or resolution. 

The Mitrofanoff channel is created from the patient's own biological tissue typically using the appendix, or alternatively a section of bowel or ureter. In th case of an Appendix, this will be detached and mobilised - retaining blood supply and nerves. One end of the channel is stiched into the bladder, and the other is tunnelled through the abdominal wall to externally create a stoma.  The stoma is often placed in the belly button, making it nearly invisible and easy to access.  The operation can be performed with a mix of open and laproscopic surgery depending on the patient's situation, patient  voice and preferencne, whether a bladder augmentation is required, and surgeon's expertise. Robotic surgery is on the horizon and will potentially offer more surgical options.  When a bladder augementation is not required the incision may be similar to a caesarean scar, discreetely located below the line of bathers and in some patients it would be hard for the untrained eye to identify it.  

In some patients the Mitrofanoff proceedure replaces the need for a suprapubic catheter (SPC) and leg bag, offering greater freedom, independence, and discretion. It enables many people to live normal, active lives with minimal visible signs of their condition, supporting both physical and emotional wellbeing.  Some patients will retain some urethral function and use both the Mitrofanoff and urethra to void.  Other patients may require the bladder neck to be tied off, meaning that the Mitrofanoff stoma becomes the only way of voiding. In this instance the patient and their family or carers must fully commit to ongoing and regularly clean intermittent catheterisation (CIC), which may be 3 hourly, dependant on their medial needs dictated by their clinician  Some patients also use an indwelling catheter and drainage bag overnight.

How do you pronounce Mitrofanoff?

It's easy. Phonetic pronounciation is MI-TROFF-AH-NOFF  Now say it quickly!  Click the link below, and practice.  

Life with a Mitrofanoff

A Mitrofanoff can be a positive and life changing experience for patients.

For some patients this is life saving and life changing operation that some describe as transformative. There are people who have been living full and productive lives with their Mitrofanoff for decades without any major problems.  The operation and ongoing management is not without challenges and requires commitment. Some patient do have complications, due to a wide range of issues and co-morbidities.

The Mitrofanoff operation is often indicated for an individual with conditions with a range of presentations which may include posterior urethral valves, a neurogenic-neurogenic bladder, neurogenic bladder, spina bifida, urinary retention, urethral injuries and abnominalities, bladder cancer, and bladder extrophy. A Mitrofanoff can provide independence and voiding discretion, destigmitise continence issues, boost self esteem and enable patients to feel more control of their body. The operation is not suitable for all patients and only your medical team can advise you of the most appropriate decision specific to your circumstances. 

The operation is a major surgical procedure typically involving a hospital stay of 4 -7 days, significant outpatient support and follow up management by a specialist team. The procedure needs to be carried out by an experienced surgeon, and ideally in a major hospital centre that has specialised and allied services including stomal therapy, psychology, social work to support ongoing management and troubleshooting. In the case of children, child life specialists and psychologists can play a critical role in preparing for, and supporting medical proceedures, operations and ongoing management and self esteem.

Some patients recover promptly and are back to light activities in 6-8 weeks, while other patients can report a a much longer recovery.  Each experience is unique to the patient, their medical and allied health team, life experience, condition, comorbidities and the number of proceedures performed, so be cautious when comparing one presentation to another, speak to your clinical team. For example, patients who have additonal proceedures during the Mitofanoff surgery such as a bladder augmentation, and a channel made not from the appendix but from bowel - Yang Monti  -will typically have a longer operating time and recovery and sometimes more complications. There are predictable complications that can arise post surgery, many of which are well known and can be managed.  

Education 

For pre schoolers and school age children you should get in touch with your education provider as soon as possible to obtain support, funding for an aid, and ensure that the school bathrooms can discretely support your child.  Funding is often available for schools to modify bathrooms  and to supply any necessary items. Many schools have a school nurse who can be trained to support your child.

Financial Support

A range of government funding is available for patients and carers

The Australian Government Stomal Appliance Scheme provides free stoma supplies to people wliving with a stoma. This includes catheters, stoppers, wipes, overnight drainage bags, and support garmets (if required)  https://www.health.gov.au/our-work/stoma-appliance-scheme