GREG'S LEGACY

Specialising in the human experience of Living with prostate cancer – warts and all

Posts Tagged ‘Quality of life

Living with a Stoma after an Ostomy

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There is always another way

There is always another way

Here I sit three months after my radical surgery that has given me a new lease on life and I feel healthier than I have been for the past three years. The surgery has also left me a legacy of dealing with a stoma and the new physical disciplines and mental attitudes associated with my new plumbing arrangements. Very basically there are two types either a colostomy (bowel) or urostomy (urine) both of which utilise a bag or pouch placed over a stoma to collect waste and changed out frequently.

 

Ostomy surgeries are usually performed for a variety of medical reasons such as endometriosis, crohns disease or cancer. The surgical formation of a stoma can save a patient’s life and provide a near normal quality of life than would otherwise be the case. At the time of my surgery there was a chance that I might have had both types of stoma’s installed as it was unclear if the surgery might damage the bowel as well. However luck was with me and the surgeon when all went well and I received the urostomy stoma only.

A whole new experience opens up for patients receiving a stoma. First and foremost is the arrival into your life of the stoma nurse who is a trained specialist nurse. The stoma nurse is responsible for educating the patients on stoma care and hygiene. The nurse is also responsible for training the patient in the use of equipment necessary to apply to stoma’s. The stoma nurse is also the first point of contact to whom the patient will report to on a regular basis. The patient will find themselves members of the Australian Ostomy Association which allows them access to a free monthly allocations of bags, pouches or other equipment, but postage costs do apply. The association also publishes a magazine on a regular basis with much valuable information for patients.

I have settled into a routine easily enough and am truly grateful for the good health I now feel. I still haven’t got back my strength fully and some days are better than others but overall I feel almost normal. I will never be able to say I believe my cancer is gone for good, but my PSA is now undetectable and I know that at least all the cancer that was known to be still active has been removed. Still, there are some issues with having the urostomy that I need to explain for readers.

Since my urine is now flowing via a conduit through my abdomen (just to the right of the navel) into a collection bag it can be subject to leaks. Leaks occur without warning when seals or base plates degrade, fold up or let go. I have trialled different types with and without seals and have finally settled on what I consider the most reliable. This apparatus normally will give me two days and nights (with daily bag changes) without failure. The bags normally need draining approx every couple of hours or when about a third full and is a simple procedure of turning on the tap over a toilet bowel. For night-time I hook my bag up to a larger night bag and this is emptied and cleaned each morning.

From time to time I have experienced leaks with the worst case being a leak during the night from either the stoma fitting or a night bag leak. I have tried to pre-empt these disasters by using a waterproof blanket under my bed-sheet and a tray under the night bag. Still accidents will happen and I have to deal with them and the clean ups as they occur. Leakages that happen while out and about are dealt with by a bag that I carry with a change of clothes plus equipment to change on the stoma. Even though a leak event is fairly uncommon it is still a mental issue for me and affects where and when I go anywhere and what I take with me. I now tend not to travel if accommodation is a factor and when I do travel, I prefer to be in my own car with all the equipment I need. Heading into the city on business is controlled by my knowledge of the location of public toilets and preferably the handicapped ones.

As I have often said before cancer is as much about the effects of cancer treatments for patients apart from the effects of the cancer itself. Cancer is a catalyst for all sorts of a domino fiasco’s introducing all sorts of impacts on a patients life. My pathway to where I am today is testament to what I have just said, however I would like to say that I am extremely grateful to be still here. Medical opinion was in agreement that my used-by date was approx last christmas if the surgery had not taken place. Learning to cope physically and mentally with my latest hurdle is a small price to pay for the extension of my used-by date especially when I feel as well as I do at the moment.

Graphic of a Urostomy Stoma

Graphic of a Urostomy Stoma

“I can do this …………and I can do it with a smile.”

Lee aka Popeye

 

Prostate Cancer – Don’t Panic

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So, you have been diagnosed with Prostate Cancer. Don’t panic! Time is on your side and that might help you make better treatment decisions than I did.

Did you know that there are three types of biopsies? Nobody told you? Well that’s par for the course. The doctors won’t tell – you have to ask. Without research, you will never find out if you received the least damaging procedure.

Prostate Cancer is a slow growing disease that, whilst it will not go away without intervention, will not take your life overnight. Many men fully live out their lives without being bothered by the cancer within.

There are five treatment options being radical surgery, chemotherapy, radiation, hormone therapy and active surveillance or watchful waiting.

The first four will leave you less of a man and damage your quality of life. In most cases, they will make you impotent with no further sexual activity … ever! Many also suffer incontinence either temporary or permanent. They will each damage your immune system making recovery much more difficult.

Before chosing any of these options, do anything you can that will boost your immune system. This is usually diet based eating foods with anti-oxidents but includes supplements like lactoferrin that I use or probiotics like  ‘Inner Health Plus‘. Do it now and maintain the only resistence your body has.

Within each of these four radical treatment groups, there are a number of options. It is not about which of the four treatments you will chose, it is about which alternative within that group is best for you.

For example, when I was diagnosed, I was recommended a TURP procedure which I blindly accepted. At that time I was unaware that there was more than one way it was done. I didn’t know that there was a nerve sparing procedure that does not take out your sexuality. It seems that my urologist didn’t do that procedure. Now, I am stuck with the consequences. The problem with specialists is that their particular procedure is the only one they understand.
This ‘multiple choice’ applies to each of the treatment options. It is your life and you need to chose the best option for yourself. Your doctors are too blinkered in their own methods to be a reliable ally.

Watchful Waiting and active surveillance give you time to research the best alternative for you. Even if your cancer is so far advanced that it will take your life, you are not going to change that – and that is the truth.

Take control of your treatment … do your research before accepting any recommendation.  Life is not a dress rehearsal – it is your life and your choice.

Treatment Options