November 2018 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.
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
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 L. Tremblay
FACEBOOK – Author Jo-Ann L. Tremblay
Author of “The Self-Coaching Toolbox” , “Better With A Bag Than In A Bag”
& “Another BAG Another DAY”
Member OstomyCanada /Medical Advisory Committee Member-
Ostomy Lifestyle Expert
Member Arteast – www.arteastottawa.com