ADVICE FROM OSTOMATES
Ostomates at MCOA meetings help each other by sharing their solutions to a wide variety of ostomy care and product questions, helping each other concerning matters of product advice, ostomy care, diet, excercise, and other matters. This page offers examples of that advice
Thanks to Teresa Guerino, Ami Tureczek, Abby Ephrick, Janet Tammen, George Salamy, Chris Katz, Lois Firzlaff, and Anne Riordan for contributing their advice for the February 2020 meeting.
Hernia Support Belt
This needs to be a way of life for all ostomates and i can't say that enough. I had my surgery in 2016, so 4 years ago this month. I didn't have major chronic issues but would at times get ulcers around the stoma and irritation. The longest I could go was to change my bag every 3 days, but most times it was every other day. Then, I started to read about peristomal hernias, because I've gained weight since my surgery now that I'm healthy and was worried about getting a hernia. I was checked and I'm fine, but from what I've researched, all ostomates really should be using support as hernias are extremely prevalent. For me, I like the belt because it doesn't cover the stoma. It takes a little time to get used to it, but now it feels weird when i don't have it on. Because there's never any pulling on the site since the belt keeps everything in place, I can go 5 days or more if I want , without changing the bag. There's never really any irritation because the flange stays intact. So so much better. I also have zeros worries of leakage anymore.
Support garments- Knock on wood I don’t have any issues with hernias, but since my ostomy is permanent, I am at a 50% chance of developing one. I always wear a thick hernia belt that I wear by New Hope if I am doing any kind of activity that requires me to use my abdomen.
I try to incorporate some exercise in my daily life. If I ever do any vigorous exercising like brisk walks, lots of abdominal workouts like sit ups, lifting, torso workouts I usually wear a hernia belt while I exercise to prevent the risks of having a hernia. I am definitely well enough to do whatever exercise I choose without limitations!
As of speaking with experience, flying with an ostomy from Newark Airport was more of a breeze to go through. However, when I was in Fort Myers Airport in Florida, they will pat you down further and question you lots. Before I even approach the TSA agent, I hand a card that you can get off of the UOAA website about letting them know about your ostomy. Usually the person that will X-Ray you, will question you and see it on the screen. Most of them were understanding about the situation and let me go through. Actually flying with an ostomy in an airplane was no problem at all and I got to my flight safe!
In a zip lock bag put a total change (pouch, flange(if two piece) and accessories if necessary (gel, adhesive remover, adhesive strips AND a disposable bag or use the zip lock bag for disposing). They are easy to pack away in a carry on. Also, you can put all the extraneous stuff (powder, paste, spray adhesive remover, etc.) in a simple bag.
They are not pleasant to deal with at all especially when it happens when I am at work and I don’t have a lot of free time to change the bag (sometimes for only less than 10 mins!) I always carry an emergency kit (that looks like a makeup bag and it has all the basic essentials 1 wafer, 1 skin prep, 1 adhesive remover, 1 leakage ring, and lots of bags and mini trash bags) around me at ALL times while I am out for long periods of time. You never know when it could happen! That’s why it’s always important to become prepared!
At the opening of the ostomy pouch, I cut a little V out of one side. This makes it easier to open to clean.
Snapping an ostomy pouch to a wafer is eased by applying just a bit of moisture to each piece. Less pressure is needed to make them adhere.
A Coloplast representative recommended warming up the Mio wafer for two minutes before applying for better adhesion. That method may work for other brands too. A member of the group finds the method works for a ConvaTec wafer.
Changing and Cleaning Pouches
For those w/ uncontrollable bursts’ of stool (Ileo) when changing their pouch & cleaning, one can GENTLY insert a tampon on their stoma to hold back escaping stool while changing.
Pouches may be deodorized with Tictacs, vanilla extract, or mouth wash.
Use a special toothbrush for final cleaning of the pouch's opening after it is emptied, cleaning areas that would be hard to reach otherwise.
Putting toilet paper in the bowl before dumping makes it easier to flush.
Fluids and Hydration
I try to get in at least 8 cups of fluid like water everyday. What helps me stay on track with my fluids is always carrying a water bottle by my side that has the measuring guide.
I go by the motto “less is good!” meaning that I do not use any fragranced soaps, lotions on my skin. To clean the area, I usually like to prefer to shower as bagless as possible to let my peristomal skin breath with warm water and nothing else. I even notice my skin looks healthy not needing all of those other items!
Impact of seasonal temperature
During the summer especially, we all get very hot very quickly which causes our skin barriers to lose its wear time. To combat that, I usually like to keep a lot of wafers on hand and double check my skin for any redness and irritation. To calm that down, I usually like to remove the old wafer off and use calamine spray lotion before I do the crusting technique for every bag change.
YouTube videos from other ostomates. There are several that are great. They test products and talk about them. They talk about diet, how to dress, etc.... All one has to do is open Youtube and search ostomy at the top.
All the manufacturers have great websites for assistance:
Urostomy Night Bags
My one big tip for my Urostomy is that I use a Jug instead of a night bag for nite time use. I have a high volume of output and never liked the bags the way they fill up and are so heavy. So what I use is a UroCare plastic Jug #4140 which has two handles (one on each side) and comes with a nice hose that is a bit longer than what is on those nite time bags. I put it at the foot of my bed so that I am able to turn from side to side during the nite. It took a little time to get use to it, but I am now a happy camper.
Avoiding Kidney Stones for Urostomates
And for any of the others who have a Urostomy and also have kidney stone problems (I have been getting them only in my left kidney)....anyway, my kidney doctor has advised me to sleep mostly on my right side because of the internal mechanism now and this prevents urine from accumulating in the left kidney during the nite. AND, of course, drink lots and lots of water throughout the day....which I had been doing but did not realize that some of my kidney stones were forming from overeating "oxalates".
Recording Health Care Conversations
An App that would be really beneficial to those w/ Dr appts:Abridge App I use: https://www.abridge.com/
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