By Robert A. Winfree, Ph.D.

Read Part 1 and Part 2 of Robert’s advice!

I’ll admit that it’s been a steep learning curve and sometimes a bumpy ride since I became an ostomate, five years ago.  But honestly, my life has never been better than it is now.  I’ve picked up a lot of good suggestions along the way, some of which I’ve written about in other articles.  My personal experience has been as an urostomate, but most of these 50 tips also apply to other types of ostomies.  I hope that these suggestions will add to what you’ve already learned and provide some new ideas to try. 

Dress for success 

•  Get comfortable with loose clothing during recovery and beyond.  Many ostomates like sweats and elastic-waist warm-up clothes.  I bought my next pair of jeans with a looser waist, a couple inches larger than my usual.  I also started wearing non-metallic suspenders (that I machine wash in a lingerie bag) under my shirt.  Tall-size flat-hemmed tees, Hawaiian and Cuban style shirts are about three inches longer than regular, to cover my pouch. 

• No-one really wants to see what we’re carrying, and they won’t have to when we wear a pouch cover or abdominal wrap. (Figure 9).  All-cotton covers help to wick away moisture after a shower, a swim or a hot sweaty day. Elastic and synthetic blend covers are available in various flesh tones, colors and patterns to match our outfits (even swimwear) or even our favorite superhero design. After all, it’s all about us…isn’t it?  

• Consider wearing a sunflower (hidden disability) lanyard (Figure 10) with an UOAA medical information card when flying or using public transportation. I’ve never been stopped from carrying on a second go-bag of medical supplies, boarding early, or using whatever restroom I needed when I was wearing this.  No problems with airport security either.  I just point to my belly and leg before entering the scanner and say “I have a medical device from here to there”.  If they ask “What?”, I say “Ostomy bag”.  That’s no big deal, but using non-metallic belts or suspenders makes it quicker, as does precertification through TSA pre-check. Don’t worry about cabin pressure either (pouch ballooning isn’t an issue on commercial aircraft).   

Don’t try to do it all alone 

• We all get blue from time to time, but it is important to recognize the signs of depression. Don’t hesitate to reach out if you need to talk about it. https://988lifeline.org 

• Join your local ostomy support group and join some of the larger online ostomy groups appropriate for your situation (there are a lot of them, and some are much more active than others). www.ostomy.org/support-group-finder/ 

• Consider sharing your own experience on on-line support groups.  There are many on Facebook and I’ve learned a lot from them.  I just searched Facebook with appropriate specific keywords like urostomy, colostomy, ileostomy, and ostomy. 

• Seek out available services for home care services, medical transportation, and caregiver respite in your community before you need them.  

• Subscribe to Canada Ostomy Magazine in print or online. Each issue is packed with informative and inspiring articles by experienced doctors, nurses, therapists and ostomates. 

• Please don’t discard clean useable ostomy supplies for any reason. There are always people in need and organizations that will gladly accept your excess supplies if you can deliver or mail them.  www.ostomy.org/donate-ostomy-supplies/ 

Keep living and enjoying life 

• Get back to the safe recreation that you know and love, but don’t risk injury by exceeding your doctor’s advice. Ease back into exercise and physical activity smartly.  www.convatec.com/ostomy-care/living-with-an-ostomy/lifestyle-support/me-recovery-series/  

• Celebrate life every day (Figure 11) and celebrate new anniversaries, like successful medical checkups. Ostomies are lifesaving surgeries for most of us, despite our challenges and inconveniences. I make the most of my new life and put my own issues in perspective by volunteering regularly with others who need help in my community. 

• Take life one day and one task at a time.  Life gets better for most of us, really, but there are some days that I just don’t feel like that.  I give myself permission to take some time for myself every day, to practice relaxation, take a walk or exercise, try out a new recipe practice a hobby, or listen to music or audio books while I take a nap.  Whatever you do in your personal time, make sure it’s something you can really enjoy, and ask to not be interrupted.  

• Don’t stop living your life.  Although other health conditions may have required our ostomy surgery, the ostomy didn’t shorten our expected lifespan… it lengthened it.  I’ve had surgery for four different cancers, decades apart, and have twice been given a sobering prognosis of perhaps having only a few years to live. I firmly believe that a positive outlook (combined with excellent medical care) contributes to a longer and much happier life.  Life is good. 

Disclaimer: The information shared by Ostomy Canada Society is for educational purposes only and is not a substitute for professional medical advice, diagnosis, or treatment. Every person’s ostomy experience is unique. Please consult your health care provider with any questions about your condition, care, or treatment plan.