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Living With a Urostomy

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Elna is a former transport safety researcher. She is a consultant for social projects and works mainly in South Africa and SADC countries.

Living With a Urostomy

In 2010, my husband was diagnosed with advanced bladder cancer. The cancer had not spread to any other organs and the removal of the bladder stopped the spreading of cancer. On being given different options, he immediately chose "incontinent diversion" which to him sounded like a much simpler solution that would most likely not need future operations.

We were shell-shocked. He was to remain in the hospital for two weeks after the surgery and after which we would have to face a drastic change in our lifestyle. Life turned out different and he had to remain in the hospital much longer.

This article describes some of the practical steps we had to learn in the beginning and which we adapted as we got more confident. It is important that the change of the urostomy bag becomes a routine and easy task.

What Is Incontinent Diversion?

For this option, the surgeon will use a portion of your intestine to create a tube. Instead of passing urine from the kidneys through your ureters to your bladder, this tube will pass urine from your ureters and into an opening in your stomach wall. From there, the urine will dump into a bag that is attached to your body.

Incontinent diversion

Incontinent diversion

Complications

We expected to resume our life after the foreseen two weeks in the hospital, but that was not to happen. There were complications with the surgery to the intestines, which did not resume its normal function. Emergency procedures to intervene with the intestines left him with damaged stomach muscles, which later also impacted on how we had to manage the stoma.

He was in ICU for almost four months. It left its toll with the family but had one positive impact: Our awareness of how close he was to death made us somehow see the new life with a stoma in a different light. That did not make the practicalities any easier though.

How a Stoma/Wound Care Nurse and CANSA Helped Us

Once in four days, we went to the stoma nurse to assist with the stoma care as well as other wound care. Due to the various surgeries and emergency procedures, the care needed was quite extensive. I have never been involved with nursing before, and although I did not shy away from it, I am clumsy at best and had a lot to learn, since the wound had to be taken care of daily.

Then she suggested we started taking care of the stoma and the urostomy bag ourselves. A very difficult period for us - I can almost say a few weeks of hell.

We could not get the bag to stay stuck. We did not want to go out at all because we expected the bag to leak at any time. My husband was very skinny and weak at that time. Our children decided that we should go with them on a beach holiday, which we did. On an emotional level, it was good for us to leave our little corner, but we were embarrassed a few times when the bag got unstuck - the smell of urine a constant reminder.

Back at home, there were a few visits to CANSA (Cancer Association of South Africa). We got less scared of experimenting. One day my husband surprised me in having changed the bag himself. In one of our visits to the stoma nurse, she said that patients who took responsibility for the procedure themselves, got back to normal functioning in their lives much quicker than those who remained dependent on others to always assist. I think the first time was quite an achievement at both a technical and emotional level.

Base plate with spaces for belt

Base plate with spaces for belt

Urine bag - designed to balance the weight of the urine

Urine bag - designed to balance the weight of the urine

Our Method of Changing the Urostomy Bag

I would advise anyone to read a few similar articles and view videos since it is important to try different equipment and methods which will work for you.

Our Adaptations

South Africa is a very hot country and sweating was the biggest reason for the bag sliding down a bit, thus hurting the stoma, or the sticky part of the base piece to come loose at one end.

We used the two-piece with base and bag separate. We decided to:

  • cut the hole in the base-piece somewhat larger than suggested so that a small slide would not hurt the stoma.
  • support the base piece with a row of Elastoplast—and later added another row of Elastoplast.
  • use the base piece typed where a belt could be fastened to

After these adaptations, the bag often lasts 7 to 9 days, although we prefer to change it once a week on a Sunday morning. The total process takes us about ten minutes. Both of us travel often, and he has no problems changing the bag on his own.

Applying cement to the base: This is the wrong way to do it.

Applying cement to the base: This is the wrong way to do it.

Applying cement to the base: This is the right way to do it.

Applying cement to the base: This is the right way to do it.

My husband keeps a bag with all the necessities at hand and often takes it with even on short journeys. Public toilets are of course less than ideal places to change the bag, but now and then it may be necessary. This can happen when the bag gets hooked on something, or when he bents down. The design of trousers can also help or hinder in keeping the bag in place.

Equipment and Disposables

  • Small plastic bag for disposal
  • Base
  • Urine bag
  • Scissors
  • Skin protectors
  • Alcohol swabs
  • Elastoplast
  • Base cement
  • Stoma powder

Instructions

  1. Cut out the hole from the base piece.
  2. Add cement on the base as shown in the photo above.
  3. Cut the Elastoplast pieces—usually 7 of the 22mm one and 8 of the 50mm one as shown below.
  4. Take off the previous base piece and clean the skin thoroughly - alcohol swabs might be needed to remove glue residue.
  5. Shave the skin around the stoma where the base piece will be stuck.
  6. Now it is quite practical to take a bath or shower.
  7. Make sure the bag itself is closed - as simple as that may sound, we have sometimes forgotten to close it.
  8. Make sure the skin is dry - some people use hairdryers but we opt to wait a bit, then apply skin protectors - we use gentian violet and cavilon when needed.
  9. A piece of gauze might be needed to keep urine from flowing on the treated skin. When this happens one has to wait for the skin to dry again.
  10. Position the base-piece - we position it slightly off-centre with more space on the top so that there is some downward sliding movement possible before it would touch the stoma itself. Make sure that the holes where the belt will fit are in the right place.
  11. Press the base piece onto the skin and apply pressure right round.
  12. Add the first row of Elastoplast.
  13. Add the second row of Elastoplast.
  14. Use the stoma powder if needed to protect the stoma.
  15. Click the urine bag into place.
Put out everything you need.

Put out everything you need.

Shave around the stoma

Shave around the stoma

Cut the elastoplast pieces

Cut the elastoplast pieces

First line of elstoplast - 22mm

First line of elstoplast - 22mm

2nd row of elastoplast

2nd row of elastoplast

It is not easy to live with a urostomy, especially in the beginning, right after surgery. Streamlining the changing of the base and bag made a big difference to us and was one of the most important steps in getting back to a fairly normal lifestyle.

This content is accurate and true to the best of the author’s knowledge and does not substitute for diagnosis, prognosis, treatment, prescription, and/or dietary advice from a licensed health professional. Drugs, supplements, and natural remedies may have dangerous side effects. If pregnant or nursing, consult with a qualified provider on an individual basis. Seek immediate help if you are experiencing a medical emergency.