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.
Written by
marnieg46
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Walked with tubes out of my kidneys and a foley for a year and a half . I never new that existed before either . I’ve never seen another guy walking around like that . It all about keeping the kidneys functioning . The pluming must work . My urological surgeon that implanted the tubes and saved my life ,told us “ We’re just plumbers “ . he his plumbing is better now . QOL should improve much . I know this was a hellish scenario for you both . Love each other mucho! ❤️
Yes Scott I've followed your own journey over the last year or so and know just some of the challenges and difficulties you've faced and am amazed that you have come through with such a positive attitude and you take every opportunity to offer so much positivity and encouraging messages to others. While prostate cancer is a condition that you'd hope nobody has to experience, it's the men like you, diagnosed so young and having normal life... as you expected to live it for many more years... pulled from under you that saddens me. I know that most just toughen up and carry on but it's all the promise and possibilities taken away from these young men I think about. Just remember your efforts to reach out to others is valued and appreciated.
This is called perseverance .. great job from the doctors too. Although we will not be perfect . None of us .. A functioning system is better than no systems working . Any improvement in QOL is a blessing .. 🙏👏👏
Yes you're right tubes and bags can not only give back some sort of normalcy but also save your sanity.
Thank you for your well wishes. ¥es I don't think until you've experienced the inconvenience of severe incontinence you'd have any idea of how it impacts on so many aspects of just your everyday life apart from anything else. We just take so much for granted.
While there are a lot of aspects of his condition that are still unresolved I'm very confident that this device has been a very successful choice. And given the complexity of his PC and complications that seem to follow every procedure for him, in hindsight I don't think the AUS 800, which we so hoped would be an answer and is so for many men, would have worked out in the long term as he probably couldn't cope with a replacement like cujoe has written about on the FPC hub.
May I ask your husband's age? Mine is 77 & suffering with fairly severe incontinence following blockages, cystoscopies, dilation program with Foley Catheter 24/7 for 2+ months. Upon removal of the Foley, he was incontinent. The amazing surgery your husband had to halt his incontinence sounds daunting, and I am not sure my husband could withstand if the opportunity existed. Just about to follow up again with his urologist. . .
I really appreciate your detailed post and wish continued success for your husband.
My husband was 73...and turned 74 in ICU after the surgery. It was a major decision undertaking this procedure as he has a history of 'if it can go wrong it most definitely will'. For example after a simple robotic prostate removal he was in hospital for 15 weeks. Like your husband he has had a normal catheter many times since his PR but mainly because of retention caused by blood clots and blockages by 'rubble' but this option is so much better.
The operation for the stoma bag went extremely well and the usual time in hospital is 7 -10 days. On day 4 my husband's surgeon was planning for him to go home within the week but true to form, an underlying urinary tract infection that manifests itself quite regularly had come back and infected a fluid mass in his abdomen and put paid to that option.
Many people, men and women who have bladder cancer do have this operation so I would think it's performed regularly. What has surprised me is how neat it is and the freedom it provides to just do normal, everyday things. The bag that covers the stoma needs to be changed each 3 days but as a precaution I do it every 2 days and really it takes no more than 5 minutes. Many men would do their own but it's easier for my husband if I do it. There is a night bag that attaches so there's no need to empty the smaller day bag overnight.
I don't know how this procedure compares in terms of difficult with the Artificial Sphincter but as an AS was recommended first by the specialist who knows my husband's problems I suspect it might be an 'easier' one on the body. But that's not an 'informed' comment just a 'hunch'. I'm sure cujoe on the FPC hub would be able to comment on the procedure for the AUS as he's been through it twice.
In Australia, under Medicare there is no cost associated with the very generous supply of items needed for ongoing management which is an added bonus.
Hope this is helpful. One suggestion I would have is make sure you seek out the very best and most experienced surgeon even if it's to get a second opinion. Once my husband's condition because so debilitating and depressing for him I was relentless in making sure I pursued every option because he regularly said 'I just can't go on like this'.
Thank you for the additional details of your husband's "journey" with this. Right now I'm "nagging" hubby just to contact his uro's office to inform them of the renewed junk production! I'm running out of steam over his recalcitrance, and have warned him his next trip could well be to the ER with a blockage not getting through at all. As to the surgery your husband had, I myself am overwhelmed at the thought. My husband has been worn down physically & mentally to the extent I cannot imagine, even if we found a top-notch uro-surgeon, he would be able to withstand the intricate major surgery.
My thinking at this point is he may be able to catheterize 2 times daily (instead of once) to keep things cleared out. I haven't really got a clue, though, and will just have to continue "nagging" to get him to the urologist. . .Australia's medical coverage sounds fabulous!
Wow, and thank you so much for posting. I am 54 and I have been incontinent since my RP 10 years ago, and it has gotten steadily worse for me. I fired my very bad urologist 4 years ago and a couple years later I was referred to another urologist who thought I wasn't a good candidate for an AUS because I had had salvage radiation. Unfotunately he did not offer me much more in the way of options, nor take me on as a patient. In recent months my incontinence has gotten so bad I finally found a urologist who gave me some options, and believed I could get an AUS. I will likely pursue that when I can figure out how to pay for it, but I am going in well aware that I have a higher likelihood of complications. It is good to know that there another option down the line, I can't imagine spending the next 20-30 years with the level of incontinence I have now, much less even worse.
I'm glad you found my post of interest. You're right about the radiation being a bit of a challenge when having an artificial sphincter. It was mentioned at our initial appointment but not something the specialist we saw in relation to this thought he couldn't overcome so from the information we received it didn't seem like a major barrier.
I suggest you make contact with cujoe who posts on the Fight Prostate Cancer hub of this platform. He's now onto his second lot AS and speaks highly of the benefits. He's put up an excellent post this week on the topic. I'm sure he'd be happy to communicate with you. I expect you live in the States and he'd be more familiar with the costs etc in your country.
While the urinary diversion that my husband has had is excellent it wouldn't have been the preferred option if he could have had an AUS. It's just that there were too many obstacles to any other solution. However, if all other options are off the table the urinary diversion is a far preferable option than an ordinary catheter that some people end up with or being constantly 'wet' as my husband had to endure.
I hope you find a solution that is just right for you as you're far too young to be putting up with incontinence especially when you know it's not just a temporary inconvenience.
I send you my very best wishes for a very favourable outcome.
Again, thank you so much Marnie. I am so sorry your husband, you, have gone through so much trauma and complications with his treatment. I am glad that he is doing it better and I really hope this is a trend toward better health as well as improved quality of life.
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