What to Buy and What to Try for Your Upcoming RC/IC
We all enter a bladder cancer removal procedure from differing ages, genders, a variety of pre-surgery treatments, and medical advice. I found the below info helpful, but I was in my 60's, lived alone, and was very active physically and in the community. Take the information based on your needs and wants.
Food and beverages during surgery recovery
Plan to eat smaller, more frequent meals as you recover so it is easier on your digestive system. If your doctor allows, go back to regular meals but healthy foods. It was suggested to me that protein beverages such as Ensure should be considered as some surgeries and medications can cause appetites to be low. If you do not normally use these beverages, please try them out first or get online for a coupon for a sample.
Bedding to prepare for unexpected leaks
During the time you are deciding which bag system works best for you, along with handling the healing process, you will have leaks. This is guaranteed to happen to everyone. I suggest purchasing waterproof mattress pads online or in big box stores. Six years post-op, I always take 2 when I travel so I do not worry about the slim possibility of having an issue on someone else’s bedding. I have never had an out of town issue, but I like the security of having the extra layer of protection. They are easily washed, inexpensive, and last for years.
Supplies: get samples of bags and wafers!
I cannot stress enough the importance of you or a family member calling and ordering sample supplies. As kind as it is for medical personnel to offer to do this, I can almost guarantee you will not receive as many samples and other items with that method. I often hear that after surgery, patients are waiting weeks for the samples when it turns out no one has ordered them.
Finding the items that work for you
Companies are happy to send out a sample pack as they want you for a customer. Call within a day or two after your surgery, not before. You will be asked to provide name, address, date of your surgery, and the diameter of your stoma. If you call quickly, you may have samples arriving by the time you get home. Then take the time to figure out what items work for you. Also, respond to the cards or emails for additional samples and new products. I still do that 6 years post-RC (radical cystectomy). Contact the manufacturer directly if you need help with leaks. Many people find that we need a wafer that better fits our shape. Frequently, flat wafers are sent out as samples, and you may need a convex shape. These samples will definitely help you determine which system fits you and your lifestyle best.
Phone numbers and websites for some ostomy supplies companies
Here are some ostomy supplies' company. Click their names to be taken to their website or call the phone number I found for each one!
- ConvaTec - 800-422-8811
- Coloplast - 800-533-0464
- Hollister - 888-740-8999
- Marlen - 216-292-7060
- Nu-Hope Labs - 800-899-5017
- Cymed - 800-582-0707
Wait to bulk buy
Do not order a large quantity of bags, wafers, etc. until you know which items you need and prefer. After that process, you should be able to order online with a company your insurance covers. They will reach out to your doctor for a script for the needed supplies. Once you have this down, it is easy to keep up the monthly orders. I suggest you order more than you need but not more than insurance covers. I have found that Medicare covers 20 sets of bags and wafers for me. I order 20 each month, so I never worry about running out or having a time when my order is late, etc.
There are options for nighttime with your bag system. I simply hook up a night bag and place it in a plastic wastebasket next to the bed. Others use a jug that attaches to your bag, a Udrain system (Google this), or a similar system. I empty my night bag every morning and rinse it with water and then a 50/50 solution of water and an inexpensive mouthwash or vinegar. I use a plastic condiment container for this as it fits perfectly in the top end of the tubing. There are adapters that allow you to use different night bags. For example, you can use a Hollister night bag with a Coloplast wafer/bag.
Products for extra security
If you are concerned about leaks while you are in the learning process, try Always or Depends for a few weeks. Order samples before surgery to have a few available and determine which you prefer. I used Always and was able to leave the house with confidence until I determined which system worked for me.
While this may seem overwhelming at first, I am confident that everyone figures it out with patience and support. Remember - you got this!!!
Do friends and family ask about your bladder cancer?