A recent, comprehensive post at the Fight Prostate Cancer (FPC) hub of HU about the Artificial Urinary Sphincter prompted me to update my husband journey. That post made me think a description of my husband’s incontinence experience and his long journey to a solution might be similarly helpful to some patients here at APC.
To date the details of the many and various difficulties my husband has encountered since first being diagnosed with PC in late 2019 are available on my profile and I provide the following as a bit of a continuation of his ‘story’.
In subsequent years, after his prostate was removed, my husband did experience (along with a number of many serious problems) mild incontinence but in late 2019 he contracted a severe dose of flu while travelling to Paris with family and the associated coughing rendered him totally incontinent with no control. Investigations in a Paris hospital which we fortunately were able to organise via a referral from our own specialist in Australia to a PC colleague there revealed considerable rupture of the sphincter exasperated by radiation damage. During those five weeks in Paris my husband was virtually unable to leave our apartment except for short distances of a few metres. Made him what my children described as the perfect child-minder!
Prior to leaving home I had already connected with this forum and had casually engaged with a few people who posted information relevant to my husband’s basic condition and his general progress at that time. Once we struck serious problems these men continued to provide me with practical suggestions for the long trip home of some 33 hours in total and also some possible courses of action we might explore once on home soil. One of these suggestions was to check out the AUS 800 which I found was considered in both the US and in Australia as gold standard of care for moderate to severe incontinence.
Once home and over the subsequent months it was very obvious that the level of incontinence was unmanageable with pads and pull ups. My husband was using 2 maxi pads doubled over plus one more adhesive one at a time and changing every couple of hours, with a pull up as well for good measure and still not managing.
Our PC specialist was very much in favour of an AUS 800 and referred us to a specialist who was experienced in this procedure and had previously worked at Memorial Sloan Kettering in the US. The first appointment for a urodynamic evaluation was prevented by blockage from a ‘stone’ and the second because of infection. The third was successful but the news back was that his bladder capacity of 100mls would be a great deterrent and the damage from radiation would further add to the unlikely success of this procedure and a possible bleed. The suggestion was for consideration be given to having an iliac urinary diversion. Initially the thought of this was off putting but as time went by and it was clear that the impact on his QOL coupled with depression related to the situation left little options. Prior to making a decision we were warned in no uncertain terms about the discomfort and problems that might be experienced and the dangers.
On September 16th he underwent a procedure for the diversion which involved, in the simplest terms, the removal of the bladder and use of part of the small intestine to construct a conduit from the urethra to an external stoma. While I could write a complementary post twice as long as this one on the various post operation complications which have kept him in hospital for eight and a half weeks, however, none were technically related to the procedure and not totally unexpected because of his past history. What I can say with certainty is that the outcome of this procedure has been very successful and has made a considerable difference to both daytime management in which there is very little difference to being ‘totally continent’ and nighttime when he’s now able to sleep through.
In spite of all my husband has been through first coping with the normal discomfort and side effects of this procedure which usually take two months to ‘settle in’ coupled with the complications he still maintains that it has been well worth it, and he’d never want to go back to the situation he experienced prior to the operation.
I hope this personal account helps throw some light on what’s possible even when things don’t quite work out as you’d like.
AUS with stricture
Oligometastatic PC and Radiation
New Member Question (s) For The Group
How fast should T drop when Re-starting ADT?
Switched to Advanced Group. Post-RP. G9. Stage 3Tb.
