Spokespeople | The Canadian Continence Foundation

Spokespeople

The Patient Experience, Hilda Dube

“I am very excited to share my clinical and personal experience with SUI having worked at the Hamilton Health Sciences Centre for the past 16 years as a Registered Nurse. I suffered with SUI for 15 years and was hesitant to do anything about it because of my knowledge of the surgical risks associated with surgery.

I had a minimally invasive mid urethral sling procedure 2 years ago and have been free of incontinence for the past 2 years.

My lifestyle has improved significantly since the surgery! I can now walk fast, climb, jog, go to the gym, dance, cough, sneeze, have sex and not have to worry about SUI. On my vacations now I don’t have the worry whether I brought enough pads, extra pairs of underwear and clothing. I feel so free, not having to worry about leaks, gushes or odours.

SUI was a horrible condition to deal with on a daily basis.

Sui occurred after the birth of our second child after experiencing very long labor. I went to my family doctor and the first thing he insisted that I was too young to have SUI. I was insistent to find out my options, he finally referred me to a specialist, a gynecologist.

The gynecologist conducted the SUI test and confirmed that I had SUI. One of the options he shared with me was the Burch procedure. The Burch procedure is major surgery something I would have to consider very carefully, however there were other options to think about.

He suggested Kegel exercises, contracting the vaginal muscles, which could help to improve SUI. I also purchased and tried the weighted balls to use with the kegels but preferred to just do the kegels and did hundreds of kegels daily. At times, I felt things were improving but SUI was still sporadic.

SUI was a horrible and embarrassing nuisance; however I refused to have the Burch Sling Surgery. As an RN working in PACU recovering post surgical patients, I was too well aware of the surgical risks associated with this major surgery.

When I turned 40, SUI became quite regular. I started to wear pads, refused to wear Depends and experienced SUI on a daily basis.

My new family doctor recommended that I see another specialist. This specialist again confirmed that I had SUI. But on this day of testing my SUI wasn’t too bad and she suggested I continue doing kegels, perhaps more often. I followed her advice and it still didn’t get better for me.

At a summer family event, everyone had to participate by getting up to say a joke. I stood up and as I told my joke I completely drenched my pants. This was the turning point for me to do something about it once and for all.

I decided to see a new specialist who discussed with me the mid urethral sling procedure. It was less invasive than the Burch procedure but there were still associated risks including punctured blood vessels, bowel and bladder. I still felt it was risky and decided not to have this particular procedure.

I kept in touch with this doctor on a regular basis and one day he told me about a new treatment which was a minimally invasive mid urethral sling procedure with even less risk. I told him to let me know when he had done about 100 and I would get it booked.

And sure enough, he let me know when he had done 100 and I finally had the surgery at the age of 48, pain was minimal for me in the thigh region, managed with regular painkillers, I took 3 weeks off work with minimal lifting and now I am perfect and can do everything. I feel so free!!!

If this procedure failed in 5 years, I would do it again immediately.

Sui is very prevalent in women but no one really talks about it. I have since found out that several friends and colleagues have SUI and that they were waiting to see how my experience and result was before they decided to do this procedure.

Since this procedure there is a new technique, there are no thigh wounds, the technique is from the vagina, the healing time is quick, and the patient can resume daily activities the next day. It is truly amazing!

A lot of women don’t know that after a failed abdominal Burch procedure they may be able to have this minimally invasive one which could benefit them. They need to go and discuss this with their family doctor who can refer them to a reputable specialist.

I have agreed to speak out through The Canadian Continence Foundation to help other women become aware that they need not suffer from this horribly embarrassing condition. I would strongly recommend this minimally invasive procedure to anyone.

My lifestyle has changed immensely as I am now able to enjoy all activities. I am so grateful to new technology and my advice to all is to research and make an informed choice. You don’t have to suffer with SUI. This foundation is truly a wonderful forum to help everyone get informed about continence!”

The Patient Experience, Ian Smith

“The first six months of the new millennium was a time for two wake-up calls. I was quite unaware of it at the time but a major life-changing event was on the horizon. Never in my wildest imagination would I have considered talking to strangers in casual conversation about incontinence and the side-effects of prostate cancer treatment. Incontinence happens to the elderly or as a result of an accident or for some other reason, not to me enjoying good health or so I thought. At my wife’s suggestion I signed-up at the new gym that was scheduled to open at my local shopping mall. I even thought it wasn’t really necessary as I have always been quite active. As it happened, that was one fortuitous decision.

The spring of 2000 saw me “working out” at the gym usually on the treadmill watching the cardio monitor creeping up through the 130 level even to 150-plus. Whoever said that I was fit - whom am I kidding? The motivation was a forthcoming surgical event for a radical prostatectomy scheduled for 17 July. In the meantime, I had spent more than a couple of hours researching incontinence products, conscientiously practicing my Kegels and hoping that it was going to be effective.

Step back to January 2000 which saw me attend the family’s GP for a routine physical examination - the first I regret to say - in many years. My first and only prostate specific antigen (PSA) test before I was eventually to present for prostate cancer surgery, was not part of that physical and ordered as an afterthought.

The results of that initial test showed an elevated PSA level 5.9ng/ml at age 57. In the absence of any other symptoms that might have been discovered by a digital rectal exam (DRE), it was sufficient for my doctor to refer me to a Brampton urologist. The following procedure is well-known to middle-aged men - PSA test, DRE as part of a routine physical, ultrasound and finally the dreaded biopsy. Then more often than not, receiving the diagnosis “you have prostate cancer.” A comment about that biopsy. For me, and maybe for many men in the same situation, it was after the event that I realized that the anticipation of biopsy was worse than the procedure itself.

During my stay in hospital I was reminded about an idea that originally came to me during a visit to England in March and long before there was any thought of surgery. This was to tackle the popular Coast-to-Coast walk. The following year 2001 was to be the 40th anniversary of my first long-distance walk around 175 miles along the Pennine Way in northern England. A great idea; there would be plenty of time to train for it.

The months following “de-catheterisation” gave me new empathy for toddlers wearing diapers. Each day by late afternoon I would have changed my pad at least twice. It is so easy now to understand how young children become fractious when they need to change diapers! Removal of the catheter after five days only permitted gentle exercise walking; driving the car was “out” for at least two weeks. Each day I would increase the distance for the day’s walk.

Then one day during my recovery in early August 2000, I well remember how depressed I felt with the possibility of incontinence hanging over me. How was I going to get back to enjoying one of my favourite past-times from my youth? “Wake up, snap out of that mood”! I said to myself. “There are so many other people in much greater discomfort and pain than you, they don’t complain.” Of course pain was not an issue for me, only the necessity of ensuring adequate supplies of pads and a change of clothes that might be required.

On that particular day I had increased my target distance around 6 kilometres. By the time I was on the return leg passing through my local mall, I recognized that I had something of a leakage problem. How I hoped that no-one would spot my condition; I made it back home without further incident. Even so depression was a major factor in daily living and happily, bouts of feeling low became fewer. I persevered with the Kegels but even so there were a couple of other later leakage incidents.

One of the features of the laparoscopic surgery that I received is the surgeon’s ability to remove the prostate gland and repair the connection of the urethra to the bladder through 2 or 3 small puncture sites in the abdomen. With the “open” retropubic procedure ( perhaps only one or two at most, stitches can be applied ) a large incision through the abdomen requires a much longer recovery period. Thus my period of regaining continence was expected to be relatively quick. One of the incidents that I have just referred to occurred one day in December whilst at the gym. I was on a rowing machine, pulling strongly when it became apparent that there was again a major leak. A point for the guys – this has been a major surgical procedure. Do not forget that even after six months everything is still not back to normal with the waterworks department. Do not push your luck and overdo things.

Having learnt that lesson, I maintained daily use of a pad until April. At that point, I was down to the occasional “drip” and discontinued pads; I was to all intents and purposes “dry”. This situation continued through the years that followed. I had come to recognize those times when I might experience a drip or two for instance in bending over suddenly or with vigorous exercise. I controlled these situations by using products designed for women.

One time I conducted an informal and quite unscientific survey of members at a meeting of a local prostate cancer support group. I wanted to find out from the seventy or so members present, their own experiences with incontinence after their individual procedures. To my surprise fewer than 20% responded to this anonymous survey. Those that did reply all mentioned some degree of continuing incontinence but with few details of how it was managed. This experience serves to illustrate that whilst men are somewhat reluctant to relate to health matters – in this instance to prostate cancer and resulting effects of treatment – much work remains to change popular attitudes to incontinence.

It is difficult to remember precisely when I came across the website for Canadian Continence Foundation. I certainly acknowledge the excellent contribution given by articles in the “Informer” when dealing with the issue of incontinence after treatment for prostate cancer. I have referred to these articles on many occasions in conversation with men, both in my previous position of Awareness Co-Ordinator with the Us Too! Group and more recently with my own “Blue Ribbon” support group.

In summary but for two fortuitous events, a timely PSA test and some gentle wifely prodding to join at the gym, I believe that life today would have been quite different. I am thankful for the new lease on life that I have received and the opportunity to try and make a difference for other people too.”

Fecal Incontinence, Louise Mott

“When I discuss incontinence with anyone and begin to tell my story about incontinence almost everyone assumes I have urinary incontinence. In fact I am 43 and I have suffered with fecal incontinence for 14 years now since the birth of my first child. I would really like to bring fecal incontinence out of the realms of 'taboo' and a subject anyone can talk about without feeling shame.

In 1997 I was a nurse and midwife when I had my first child. It was a difficult labour that ended in a forceps delivery. I had no idea how much that delivery would change my life. I sustained an extensive tear and was in a great deal of pain. Soon after my delivery I became aware that I was unable to control my wind and I seemed to be soiled all the time. I decided it was because of the tear and assumed it would get better.

At my post natal 6 week check I advised my doctor that I was 'having accidents' but she advised me it was early days and because my tear was so extensive I probably had a haematoma. I was embarrassed and decided to keep quiet.

The next five months were awful. I became reclusive and very depressed. I didn't even tell my husband, mum or friends, I was horrified. On the very few occasions I had gone out it had ended with my bowels emptying into my clothing and I was left feeling ashamed, alone and even more desperate. On one particular occasion my husband came home unexpectedly just after I had an accident. I was in tears and he was very concerned but I lied about why I was upset because I felt dirty. He sat with me and asked more questions His kindness and understanding helped me to share my secret with him – I was fecally incontinent.

The next day we visited our doctor and I was referred to the UK's leading Colorectal Hospital. I was diagnosed with a 60% effective anal sphincter. When my baby was 18months old I had an anal sphincter repair but sadly on the third day post operatively my wound burst open with a terrible infection. I had to wait 7 months for the hole in my perineum to heal up – it was awful.

My incontinence was worse than ever and because of a blood clotting disease it was deemed unsafe to perform a colostomy. Initially I felt depressed and dirty', I never felt attractive and intimacy was a thing of the past. When you think nothing can be done you feel so alone.

One day during a biofeedback session I was approached by a research nurse and asked if I would share my story with some nurses. I was very nervous and scared but they really appreciated it and it felt great. The research nurse then arranged a self help group and I was actively involved. We wrote a paper about the group which found that self help groups were the most effective tool in helping sufferers.

I have had incontinence now for 14 years and I have managed to turn my life around. I recovered from depression and started giving personal perspectives of living with incontinence to health care professionals at several UK universities.

In August 2008 we moved to Canada – something I never thought I would be able to do. This year I travelled to New Orleans and Chicago to give healthcare professionals my personal/professional perspective and I offer them diagnostic tools to help identify women at risk.

The very best part of giving lectures is that women have been identified in the community and helped.

My aim is to take away the taboo surrounding fecal incontinence and offer men and women sufferers the support they need and deserve. I can be contacted through The Canadian Continence Foundation: help@canadiancontinence.ca and want sufferers to know they are NOT alone.”

Prostate Cancer Journey, Doug Moore

Introduction

My name is Doug Moore, I’m 64 years old, a part-time pastor and prostate cancer support group leader in St. John, New Brunswick. I’m also a recurrent prostate cancer survivor.

My patient journey had an unexpected beginning. The Christmas of 2007, when I was 59, I was roughhousing with one of my sons and slipped, accidentally injuring myself. The pain kept lingering, so I went to see the doctor. It ended up just being a muscle sprain, but, my doctor noticed that I was long overdue for a check up. He measured my vital signs and did a digital-rectal exam, to check for prostate abnormalities. What he felt prompted him to send me to a urologist for more testing. That’s how I was diagnosed with prostate cancer.

Reaction/Choices

I was shocked by the news, because I wasn’t showing any symptoms. I had no idea that this sort of cancer often had no telltale signs. Right away, I gravitated towards the worst thoughts: what’s life going to be like, will this be debilitating, am I going to die?

At the time, my PSA, or prostate-specific antigen, level was 3.8 – at the upper limit of the normal range. However, six of my 11 biopsy samples tested positive for cancer, and my Gleason score was 7, meaning the cancer was moderately aggressive.

My urologist offered to do a radical prostatectomy, and also suggested I see a radiologist, which I did. Neither specialist pushed their area of expertise. The choice was left to me and my wife. We decided to go with surgery. My urologist believed the cancer was contained in the prostate gland, and if I required subsequent treatment, that it was best to have the surgery first.

Surgery

The procedure went well, and my PSA level dropped to 0.1. Although I had issues with urinary incontinence and impotence, they got better with time. At my one-year follow-up, the incontinence was almost completely resolved. Surgery impacted my work, since I wasn’t able to travel much, and I had to be careful for a while about how much I lifted or to take it easy when playing with my grandchildren.

Recurrence

Unfortunately, during the same one-year period, my PSA had risen, suggesting that there was some remnant cancer. I was 60 at the time, and my doctor felt that I would face growing challenges if my levels continued to go up. He recommended radiation therapy, so I had 35 treatments – five a week for seven weeks – in combination with hormone therapy.

Learning that my cancer was recurrent was a lot worse than my initial diagnosis. You get used to the idea that you’re a cancer survivor, so it’s disturbing to learn you’re still a cancer sufferer. When I had my surgery, I continued to have different options. When the surgery wasn’t successful, I played my next card – radiation and hormone therapies. If that failed, the next card would be chemotherapy. If that didn’t work, I was out of cards.

Side/after effects

After radiation therapy, I felt extremely weak and sleepy all the time. It also damaged my bladder, causing incontinence to return. This has been the biggest issue, in terms of quality of life. I was in the hospital three of four times because of bleeding and blood clots that clogged up the urethra. I take a bladder medication three times a day to help with that, and I use a catheter.

For weeks, the idea of using a catheter seemed impossible – the one they used at the hospital had a balloon you pumped to keep it in place. I thought to myself, how am I going to do that? Of course, I learned that the device you use for self-catheterization is more of an oversized drinking straw – there’s no knob or balloon. You push it in, through to the bladder, the bladder drains, and you pull it out. The whole process takes a few seconds.

Kegel exercises also help strengthen the bladder muscle, but not everyone fully recovers. I’m almost there. I’ve gone from catheterizing myself every day to every three days.

Impotence is another common side effect of treatment, because of damage to the nerves around the prostate. There are various treatment options, from Kegel exercises to mechanical devices like pumps to erectile dysfunction drugs.

  • “Please note that hormone therapies can contribute to impotence and, depending on the therapy used, may also cause hot flashes, loss of sexual desire, nausea and diarrhea.”

The more you know

It’s important to understand these and other issues that may occur after treatment, in order to deal with them properly. Resources like this website can help you understand the different terms and issues related to your disease and treatment. As a pastor, I had seen dozens of men living through prostate cancer, but I didn’t know what things like PSA or Gleason score meant.

Knowledge provides comfort. The more you know, the more you take ownership of your disease, and the less you feel ashamed. Men are more open these days. They aren’t afraid to talk about having and surviving prostate cancer. It affects private areas of our bodies and our sexuality. If you look at our female friends going through breast cancer, they’re making their need known. Men aren’t like that, but it’s changing.

Recovery

My radiation and hormone therapies ended two years ago. Health-wise, I feel strong and carry on an active lifestyle. At my most recent follow-up, the doctor said my PSA was “perfect,” so it looks like I’m in remission. I still go for tests regularly – at first every three months, and now every six months. They haven’t said I’m cancer-free or that they don’t have to see me anymore, but I’m hopeful that day will come.

The doctors and staff have been so helpful and encouraging. As tough as it has been, some positive things have come out of my experience. I used to live my life looking for tomorrow and next week and next month. Now, I find myself appreciating each day. I relate to people better. As a pastor, I visited people who were sick all the time. Being the one in the hospital bed changed my perspective.

During my recovery, I realized that I wanted to connect with people who had walked this walk. I’d also like to be involved in helping encourage men to get their prostate checked. The reality is, if I hadn’t gone to see my doctor because of an unrelated issue, I would still be walking around today, thinking I was fine. There’s little warning for prostate cancer, so you don’t want to leave your diagnosis to chance.

Support group

There had been a support group in St. John, but there wasn’t one when I was looking for one. My doctor asked me, why don’t I start one? I didn’t know anything about the disease or the language that went with it. He assured me that it was his job to explain; my job would be to talk about the experience of having prostate cancer. That pushed me to take a action. I now lead a group that meets every month, and our e-mail list has grown to 40 people. Spouses are always welcome – in fact, a lot of the men who attend our meetings were brought in by their wife or girlfriend. And women need support too.

Contact Us
PO Box 417
Peterborough ON K9J 6Z3
Phone: (705) 750-4600
Email: help at canadiancontinence dot ca
Sign up for our
E-News Bulletins