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|Posted Thu 20 Apr 2017 13:54
In the thread 'Stigma - Mint on a Soapbox', Happy mentioned being on the receiving end of remarks and attitudes from some medical professionals regarding his incontinence and requested some feedback. I think that this topic is worthy of a separate thread, as I too have been subjected to similar. Regarding feedback, all I can do is relate some of my own personal experiences which support the point he makes.
I have been in to theatre for thirteen surgical procedures to my bladder and urinary tract, three for gall-bladder, plus innumerable uroscopes, urodynamics and other tests. So, I have been around the block a few times regarding medical people, especially where my bladder and urinary tract are concerned.
In that time I have been cared for by hundreds of medical professionals including doctors, nurses and specialists both in and out of hospital settings. Of those hundreds, I have found that most have been good to excellent when dealing with my continence related issues, but there are a few who stick in my mind as being not so good. Unfortunately it is the 'not so good' experiences which I specifically remember, not the many, many good ones. So my bad experiences are definitely in a tiny minority, but are memorable none the less because of it.
I certainly agree that there are times when we all make ill considered comments, but that is not what we are talking about here. We are talking about medical opinions and advice delivered by professionals based on their professional knowledge and experience, not 'off the cuff' remarks.
Firstly, credit should be given where credit is due and I would like to make special mention of a super lady urologist in Bunbury, the ladies at the Continence Advisory Service in WA, a particular urologist including all of the nurses at a private hospital in Kuala Lumpur and of course everyone at the Continence Foundation of Australia.
When my incontinence and other symptoms recurred after many years of being dry, I went to see two successive urologists, both of whom advised clam cystoplasty. They both honestly believed that having my bladder sliced open and patched with some of my bowel, resulting in a bladder which would never work again and a urostomy continually clogging with bowel mucus was preferable to being incontinent…… Both were very surprised that I did not agree.
On a urology ward in a hospital following surgery and after the removal of an indwelling catheter, I was told by a nurse that incontinence was unacceptable. I had to see it, 'from their point of view' and try harder to be dry. The irony is that the surgery was for an internal sphincterotomy in preparation for a transurethral stent to make a 'drainpipe' urethra and save my kidneys…… It is funny that after nearly twenty years I can still remember her name and not any of the others.
In a different hospital I was looked after by two nurses who were great to begin with. But after I refused to buy into their euphemistic language and mirror their terminology, they became more and more negative towards me. After nearly a week of verbally 'politically correcting' me they ended up being hostile because I preferred to use plain language, (no swear words or crude words, just plain language), regarding my own incontinence…… We did not part on great terms.
At a conference I ended up sitting and chatting with two continence nurses over lunch who were both adamant and in agreement that incontinence should never be tolerated for any reason. When I told them that I was incontinent following total urethral sphincterotomy, they both advised that I have not yet made the right decision for Botox injections and a urostomy. They stated with great conviction that it was far more acceptable to have a bladder that could not work at all following injections every six months and a bag which had to be regularly emptied during the day. Not to mention the constant UTI's that go with it…… I did not sit with them after that and they sort of avoided me during the day.
None of this was ignorance or lack of knowledge as those in question were knowledgeable, qualified people. There seems to be some kind of medical consensus which dictates, 'dryness by any means'. I suppose that is all well and good, except the proponents of that concept are not the actual people who have to live with the consequences of it on a daily basis.
Well that pretty much concludes another Soapbox and I hope to see your replies.
Have you experienced any similar comments or opinions?
Please get back to us and let us know, your letters are always valued.
|Posted Thu 20 Apr 2017 16:54
Another Soapbox , I hope you will find more as these comments are getting interestin/
|Posted Fri 21 Apr 2017 10:12
Hey Mint, Dear Bleutrain,
Best ever soapbox topic! It is indeed amazing you have such an extremes in the medical world. I indeed experienced very similar reactions to what you both describe!
Most people I deal with for my IU are absolutely professional and don't make me feel bad about myself. Unfortunate you mainly remember the 1% people that believe you kind of seek attention or are lazy or don't try hard enough or something like that.
I think it is all to do with the actual decision that you want to wear some kind of protection. These people talk about operating, serious antibiotics, implanting electric buzzers or using botox as if it is just normal. If you decide you rather use bladder training, calming or other techniques and also do wear some preventive protection than this seem to be lazy, irresposible, not trying hard enough,... I believe there is a simple solution for these guys: Have them run around a public space with wet pants and see how they how after that!!!
Again, most doctors and nurses I deal with are absolutely wonderful. As with anything it is just the few rotten apples that spoil everything. As you know I am rather shy about my issues and as such I don't really reply much when I get these inappropriate remarks and just avoid these people if I can. This is off course not the right way of action and I regret not telling these people what I think...
Keep up the great work. All the very best,