Category Archives: urostomy

Use of Stents

November 2018 Question

Question:

My Father had a radical cystectomy for treatment of advanced bladder 11 months ago. He has an ileal Conduit diversion with urostomy. His stoma has retracted to just below the abdomen, below skin level. Unfortunately his treatment thus far has involved having stents remain in place and changed every 6 weeks in a Cath lab. He is required 10 days of antibiotics before this procedure and it is painful and as mentioned every 6 weeks. Recently his Oncologist/surgeon has suggested a trial without stents. My Dad uses a convex appliance and has had success with this so far however he has always had stents in place that drain urine directly into the bag. Now we have noticed some urine does leak around the stoma and seems to drain into the bag with little issue. We are most concerned about skin breakdown if and when the stents are removed permanently. I realize this is an extremely rare complication and we have had very little luck researching information on retracted stomas, or care for them also I’ve not found any Blogs of others that have been dealing with the same thing.

My question is, can the stoma drain effectively without the use of stents? Are there others that have or are struggling with this that we could connect with for support? Any and all information or suggestions would be appreciated.

Response:

When an ileal conduit diversion is performed a small section of bowel, usually 12-14cm, is used to form the conduit. The remaining bowel is reconnected for normal function to continue. The kidneys produce urine, which passes down the ureters. The ureters are stitched into the conduit. One end of the conduit is closed and the open end is brought out onto the abdominal wall to form the stoma. During the operation fine tubes called “stents” are inserted into the kidneys via the ureters to assist free drainage of the urine until healing has taken place. These stents either fall out or are removed after a period of time post surgery.

Your Father’s goal is quality of life, this includes no leakage around the stoma, and this can be achieved. Although he is using convexity at this time, it would be to his advantage to explore other equipment options that offer various depths and flexibility. I suggest that you contact each company and request (free) samples. In addition, “Marlen” is a company that offers the deepest yet most flexible convexity for people with retracted stomas or stomas in a skin fold.  Website – https://www.marlencanada.ca/collections/urostomy

I have 3 suggestions with regard to connecting with individuals and/or groups who can share their experience and be of support:

NSWOCC | Nurses Specialized in Wound, Ostomy and Continence – formerly called Enterostomal Therapy Nurse, (E.T. Nurse)

A consultation with a Nurse Specialized in Wound, Ostomy and Continence – formerly called Enterostomal Therapy Nurse, (E.T. Nurse), can help you immensely, with regard to practical information, and emotional support.  Most E.T. Nurses have experience with ostomates who have undergone various procedures such as ileal conduit, and will be a wealth of knowledge for your understandings.

Nurses Specialized in Wound, Ostomy and Continence – (E.T.) Nurses, are the “go to” professionals for ostomates. A NSWOC (E.T. Nurse) is a registered nurse with advanced specialized knowledge and clinical skills in wound, ostomy, and continence care. NSWOC (E.T. Nurses) work closely with ostomates and have the experience to assist them. To find a NSWOC  (E.T. Nurse) in or near your location; go to the www.ostomycanada.ca website. You will find the menu at the top bar, click on “Support”, there you will then see a drop down menu, find and click on “Find a NSWOC”, follow the instructions on that page.

Ostomy Support Group

There are Ostomy Support Groups in many communities, where you can discuss your situation with other ostomates, and this can be very helpful. To find a Support group near your location; go to the www.ostomycanada.ca website. You will find the menu at the top bar, click on “Support”, there you will then see a drop down menu, find and click on, “Find your Local Support Group”, follow the instructions on that page.

There are of course various online ostomy related forums you could visit through google, and if you are on social media such as Facebook, you will find ostomy related groups.

Bladder Cancer Groups – Canada

Get Support

Good information, the best ostomy equipment for individual needs, and with support, your Father will gain peace of mind, and maintain quality of life.

Have a great day.

Jo-Ann

Jo-Ann L. Tremblay

THE OSTOMY FACTOR Blog-joannltremblay.wordpress.com

FACEBOOK – Author Jo-Ann L. Tremblay

TWITTER @joanntremblay

Author of “The Self-Coaching Toolbox” , “Better With A Bag Than In A Bag”

& “Another BAG Another DAY”

amazon.com, amazon.ca, amazon.co.uk

Member OstomyCanada /Medical Advisory Committee Member-

Ostomy Lifestyle Expert

Member Arteast – www.arteastottawa.com

Website: jo-annltremblay.com

Problems with Ureterostomy night collection tubing

August, 2018

Comment:

I have had a Ureterostomy for 2 1/2 years now and have noticed something I am not sure about. I use a night collection bottle and the tube that connects the collection bag to the night bottle starts to turn black after a very short time and after 3-4 months it is pretty dark. I have tried washing it in a vinegar solution but it does not change. The only solution is to replace the tube. I am wondering what this, is it dangerous, can I do any thing or is it just best to replace it? I have also noticed that at about day 4-5 the tip of the drainage spout starts to turn black.

Is there someone I can contact who may be able to give me answers?

Response:

It is recommended that you contact the equipment manufacturer for further advice on:

Basic maintenance particular to their specific equipment,

How you can prevent the blackening of the night bottles and tubing,

The potential health risks of the blackening of the equipment.

Most equipment manufacturers suggest drainage bags, bottle or tubing should be replaced when there is clouding, odour or discolouration.

 

The following are some useful tips and information that may be helpful:

Setting it up

There are several types of night drainage systems. Whichever type you chose, you need to set up the system before connecting it to the pouch. Here are some tips:

  • The tubing and the container can come as one piece. But they can also come as two pieces. If they do, put one end of the tubing into the lid of the container. Keep connected until the container must be replaced.
  • Each night, connect the other end of the tubing to your pouch. You may also need an adapter to do this. Most pouches come with such adapters.
  • If you use an adapter, put it on the tubing. Keep the adapter connected until the container must be replaced.
  • Replace the container when it starts to look cloudy or changes colour.

At night

The pouch should be about one-fourth full when you attach the drainage system to it at night. This will help get the urine flowing into the tubing from the pouch. To attach the system to your pouch:

  • Place the night drainage container in a basin or a small trash can on the floor next to your bed. This will keep it from tipping over during the night.
  • Connect the tubing to the pouch.
  • Open the closure on the pouch drain. This way, urine can flow through the tubing.
  • Use a leg strap to keep the tubing next to your thigh. This will help keep the tubing or pouch from twisting.

In the morning

To detach the night drainage system from the pouch each morning:

  • Before detaching the tubing, return the pouch drain to the “closed” position to prevent leakage.
  • Remove the lid from the night drainage container, but keep the tubing in place.
  • Empty the night drainage container’s contents into the toilet.
  • Rinse out the tubing and container with cool water in the bathroom sink or tub.

Cleaning the system

Clean the night drainage system every 2 to 3 days. Follow these steps:

  • Set white vinegar, a measuring cup, and a funnel next to the bathroom sink or tub.
  • Pour 1/4 cup vinegar through the tubing into the night drainage container.
  • Pour 2 cups cool water through the tubing into the container.
  • Let the tubing and container sit for at least 1 hour. Then empty the contents into the toilet.
  • Rinse out the tubing and container with cool water.
  • Let the tubing and container air dry.
  • Replace

 

Support for Elderly Patient

July, 2017

Question:

I am searching for information/help/support for an 80 year old friend who has just had her bowel and bladder removed and now has two ostomies that she is totally unaccepting of or prepared to look after. She is presently 6 weeks post-op and still quite frail and in a rehabilitation unit at the Brampton hospital. She was not at all prepared psychologically for what her reality would be and doesn’t seem to be getting the support she needs to accept and move forward with her ostomies or her independence. The support has been very poor. She is a widow and has two sons who although caring don’t seem to be able to organize a helpful plan for her.

How does one go about getting teaching for her ostomies as well as support for the extreme life style changes she now has. She was in her own condo and driving before surgery. I was unable to find information on an ostomy clinic in Brampton. She/her family are in the dark with things as basic as how and where she gets supplies and what is and isn’t paid for. In fact some of this information may have been given to her, however if it’s given when she’s alone, she is too overwhelmed to be absorbing information. We need a coordinated treatment plan with her and her family present. Any help with how to get her physical and mental support would be appreciated. I live in Ottawa so I am unfamiliar with help in Brampton.

Response:

Your friend, her family and friends although at the moment feel overwhelmed and isolated, there are in fact many resources and services available to educate and support new and veteran ostomates. Organized programs are available that are designed to assist all people with ostomies and their caregivers. The following is important information that highlights these programs:

Ostomy Support Groups

Ostomy Support Groups provide a comfortable private setting where people who have had, or are about to have, ostomy and related surgery can obtain literature and view videos related to ostomies. Trained ostomy visitors are on hand to discuss varying aspects of ostomy management and living with an ostomy.

                             Ostomy Support Groups are non-profit, these Support Groups offer:

  • Monthly peer support group meetings that are designed to promote social connection with fellow ostomates, speakers presentations, and more. Chat with individuals who are thriving after surgery. They will inspire you.
  • Network with others about valuable rehabilitation needs, both pre and post surgery.
  • Access to an assortment of literature and videos on ostomy and related surgeries.

Ostomy Support Groups offer “Trained Volunteer Visitors” with a vast experience that can provide reliable, timely information to help deal with all unique situations. Share personal questions and concerns and you can arrange a follow-up appointment with a Visitor at a convenient time and place, if necessary. These trained volunteers visit post-operative patients.

I highly recommend that your friend call or email the following to determine what Ostomy Support Group is the most convenient location to her, and to inquire about the Ostomy Visitor Program, and  where the most convenient locations for purchasing ostomy equipment in her area, etc..

The Ostomy Support Groups I located in your friends area are:

Ostomy Toronto
344 Bloor St West, Suite 609,
Toronto, M5S 3A7
Located at Bloor and Spadina.  Please call if you need precise directions from your home.
Telephone: 416-596-7718 or 1-866-285-5948
Fax: 416-596-8250
E-mail: info@ostomytoronto.com

Halton/Peel Ostomy support Group (Oakville Ontario)
Primary contact: Richard Olley, President; Phone: 905-825-3443; Email: richard.olley@yahoo.ca
Alternate contact: Chuck Davey, Secretary; Phone: 905-712-0427

Professional Assistance

I highly recommend that your friend make an appointment with an Enterostomal Therapy Nurse (E.T. Nurse). Enterostomal Therapy nursing specializes in wound, ostomy and continence care. An E.T. Nurse is a registered nurse with advanced specialized knowledge and clinical skills in wound, ostomy and continence care. E.T. Nurses work closely with ostomates and have the experience to assist them.

To find an E.T. Nurse in your friends location see the following instructions below:

Go to Ostomycanada.ca website (this site). You will find the menu at the top bar, click on “Support”, there will then be a drop down menu, click on “Find an E.T. Nurse”, follow the instructions on that page.

Here may be a helpful ET contact in Brampton:

Care Partners
Svetlana.Soukhinina@carepartners.ca
60 Gillingham dr. Unit 301
Brampton ON
Canada L6X 0Z9
905-452-7118

Financial Support

Assisted Devices Program

The province of Ontario provides the Assistive Devices Program. If an individual has a long-term physical disability, they can get help paying for equipment and supplies when they qualify for the Assistive Devices Program. Ostomy equipment qualifies.

To qualify in Ontario, you must be an Ontario resident, have a valid Ontario health card, and have a disability requiring the equipment or supplies required for 6 months or longer. The program does not consider income. Ostomates receive 2 cheques per year (fall and spring), to help offset equipment costs. For more information (Ontario Resident), go to: https://www.ontario.ca/page/assistive-devices-program

Disability Tax Credit

Ostomy Canada Society will be announcing a new tri-fold pamphlet in the next few months, (2017), in the meantime a good source for information, check out the following, designed by the Halifax Ostomy Association – http://www.ostomyhalifax.ca/disability-tax-credit—help-yourself.html

For further information, visit the Canada Revenue Agency Government Website by going to: http://www.cra-arc.gc.ca/disability/

This informative page covers:

  • What is the disability tax credit?
  • Find out how you can benefit. The Form T2201, must be filled out and certified by your medical practitioner such as your General Practitioner (GP), or Surgeon. (Who is eligible for the DTC? You are eligible for the DTC only if Form T2201 is approved. A medical practitioner has to fill out and certify that you have a severe and prolonged impairment and must describe its effects. There is a “Few Questions” section that will help you and your  medical practitioner find out if you have a disability that may be eligible. As mentioned earlier in this response, there are many people with an ostomy who are eligible and receiving the DTC. See “Eligibility criteria for the disability tax credit”  –  to learn more about the requirements to be eligible for the DTC.)
  • Who is eligible for the DTC?
  • How to fill out Form T2201?
  • What happens when Form T2201 is received at CRA?
  • How to claim the disability amount once the DTC application is approved?
  • Forms and publications. (Such as Guide RC4064, Disability-Related Information, Form T2201, Disability Tax Credit Certificate)

Purchasing Ostomy Equipment

I highly recommend your friend contact and visit with an E.T. Nurse, these professionals are excellent resources for locations as to where and what ostomy equipment to purchase. In addition, the E.T. Nurse, is the professionals who will assist her in finding the ostomy equipment that will best suit her situation, unique stoma anatomy, etc.

Living life to the fullest is an real option for your friend and there are many ostomates, professionals and programs to support all ostomates and their caregivers.

 

 

 

 

 

 

 

Our friends over at Nurses Specialized In Wound, Ostomy And Continence Canada [NSWOCC] (formerly called The Canadian Association for Enterostomal Therapy (CAET)) have renamed their handy look-up page on their website. It was formerly called “Find An ET Nurse” and is now called “Find a NSWOC“. Click on the image to the left or link here to go to their site.

Good news for people living in Ontario with an ostomy!

Important Information

In Ontario, temporary ostomies will now be covered under the Ontario ADP grant program.
Your doctor or nurse practitioner must state it will be for 6 month or longer.
Any ostomy under 6 months will continue to have no coverage.

Great job to the Advocacy committee! It has been a long fight but we did it!

Link to the ADP website: http://www.health.gov.on.ca/en/public/programs/adp/ (Click Equipment Funded, or click Eligibility).