John Ayres' story, as told by Angela Magill
       - managing incontinence after prostatectomy



Ayres Magill
This story is our experience with incontinence after radical prostatectomy. Although everyone's story will be individual to them, it seems that ours is fairly true of the experience of many others that we have talked to. This detail may give some insight and reassurance with the expectations of the journey to becoming dry again.

Before surgery we attended a meeting with the continence nurse at the ACT Health Department, Moore Street, Canberra city. It was quite helpful to get the general information of what may happen after surgery. We wanted to know what was likely to happen in John's case, but of course she couldn't say as everyone is different and some may not become fully dry at all. We could only imagine so we equipped John with a huge quantity of numerous styles of pads and pants for the expected incontinence. Details of our recommendations for these are given later.

John had his surgery on 2 August 2011. The urologist said the nerves were spared and everything went well and the pathology report showed that it had not spread beyond the prostate.

On day three after surgery John was walking about the hospital ward quite well. The catheter leaked due to spasms of the bladder so he had to use a pad to catch the leaks. He came home on day four with the catheter in place. It became more and more uncomfortable especially at the end of the penis. A numbing gel was put on where the catheter entered the penis, but it was still very irritating. The catheter was removed on day seven which went surprisingly easily. Such a relief. From then on there was a small but constant leak which became quite distressing as it wouldn't stop. There was occasional squirting too when John moved about. The community nurse called in at home to check his dressings.

In the first couple of weeks John was changing his pad every half hour or so as couldn't stand being wet. The first night he wore the big padded pants that we had bought but found them unnecessary - a pad inside the front of the underpants was more comfortable and did the job for both day and night. We donated all the pants we'd bought to a local nursing home.

Day eight after surgery John was sleeping quite well but getting up three times in the night and was leaking and squirting when mobile. He was fine when sitting still or lying down, but when up and about, it was leaking with a constant steady drip. He was quite distressed as he was hoping that things would settle down faster than what they were. We made an appointment with the continence nurse at Belconnen Health centre who showed John pelvic floor exercises (10 x 4 times a day) which from then on he perfected and has done religiously ever since . He felt better in himself and was more accepting and realised that the nights were becoming dryer and he wasn't soaked when he woke in the morning.

Something worth mentioning is that he found there was no urge to do a pee. There was no "ponding" of a quantity to pee. No sensation of a full bladder. This was perplexing too.

He was walking twice a day for about 40 minutes, gaining his strength, doing his pelvic floor exercises and getting over the surgery quite well but was feeling out of control regarding the incontinence.

Day ten after surgery he was dryer in the mornings and only getting up once or twice during the night. He had a good pee in the toilet in the morning which was a good sign that things were improving. Mornings were getting better in that there was slower and less leakage but in the afternoon he was leaking all the time. It was ok when he was sitting still. The leaking was less after resting. Some days were worse than others depending on how much he was resting.

Eighteen days after surgery there was still a constant drip and no 'ponding'. Nothing much to pee at the loo. But, he was changing his pad every 2 hours now so that was an improvement.

The next day was a breakthrough! He got up only once during the night for a pee at 4am and his pad was dry. At 8am he woke and the pad was dry again! So, dry at night for the first time! Still had a 'ping' in the tip of his penis which was annoying. We asked the specialist about this ping sensation and it is normal and eventually faded over the next couple of months. In the days after this he was almost dry on waking and then it became the usual to be dry every morning. There were less heavy let downs during the day, especially in the mornings, but still no sensation of having a bladder.

Three weeks after surgery John put in a call to the Urologist to find out if what he was experiencing was 'normal'. The Urologist was reassuring. He was pleased with the progress and that being dry in the mornings only three weeks post surgery was very good. He advised John to try and hold off going to the toilet for a pee for as long as he could so the bladder could learn to fill up once more. He also recommended green tea instead of tea/coffee which is less stimulating to the bladder. John switched to green tea and is still having it in preference. The Urologist said it's normal that at about six weeks you start to notice a substantial improvement and to keep up the pelvic floor exercises.

We had our appointment with the continence nurse on 25 August. She advised that the usual progress in healing is: first you find you are dry in the mornings; next you are dry through the morning but late afternoon is the last stage that you become dry. It can take three to six months. John is doing exceptionally well being dry in the mornings just two and a half weeks post catheter.

The next day John had a bad day having a constant drip and a couple of big let-downs. He felt down and disappointed as he had hoped he had passed the big let-down stage. It seems that he took one step forward and one step back, but I had taken notes daily. It's like watching a fingernail grow - you can't see it unless you compare it weekly and the notes did show the improvements.

One month after surgery John had his first really good pee after holding on. John made big endeavours to hold on before visiting the toilet and it seemed to be working and he was doing reasonable pees every two to three hours. Getting up from the chair caused a bit of a squirt at this stage but that lessened when he learned to do a squeeze before standing. He noticed that he was only going through one pad in the morning now. He also worked out that doing a few pelvic floor exercises after a pee helped with the leaking too.

Week five after surgery John had some good days and was down to four pads a day with no big let downs. He noticed that after his walks he was a little wet on the pad due to stimulation of the bladder. Progress continued slowly.

By late November most days John was dry all day with only a little hint of dampness on the Level 1 Tena pad. Still squirting on exertion but not too bad. No pads are worn at night now and still doing the 10 pelvic floor exercises morning and night. He's back playing golf now.

At some stage during December he told me he hadn't worn a pad for about a week. How wonderful!

Recommendations

Those who are to have prostatectomy surgery should attend the ACT Health's Prostatectomy Education Sessions prior to and after surgery. (Phone ACT Health on 6207 9977 for details and see details
here.) Pelvic floor exercises are very important in gaining control. As mentioned earlier, the continence nurse provides training prior to surgery and building up strength in the pelvic floor before the surgery is helpful. Spend time to ensure that you are getting them right as this can be a bit tricky. The surgeon advises when you can begin the exercises after the surgery. You need to do the exercises daily. We were told that if there is any weakening in bladder control in the future, resume them regularly.

The underpants John found best to wear were the sports ones from Target with the short leg. They are fitting and are double layered in the front which is great for when you are pad free as they catch any stress squirt that may happen on occasion.
The best and most economical to use in the early days were the pads to from Aldi - The brand is Sana and the level is Extra (pink packet) and are for "protection for light bladder weakness". You get 12 in the pack (found in the back right hand corner of Aldi stores among the women's pads). They have a thinner pad also - the level is Normal (yellow packet) which is fine for when the leaking improves. Later John used the more expensive Tena brand which are designed for men (wider at the front). We bought them from Woolworths when on special or from the discount chemist. The Level 2 were the ones used initially, and then John moved to Level 1 which are the most discreet. I must say that the pads were hard to detect through the trousers so there should be no concern about them being obvious.

Angela

May 2012