Living with a Colostomy

Listen to the episode here!

If you find yourself diagnosed with a disease like colorectal cancer, ovarian cancer, or Crohn’s disease (to name a few), you may be told that part of the treatment is a colostomy.

A colostomy is a surgical operation where a piece of the colon is brought out an opening in the abdominal wall to bypass a damaged part of the colon. (See the video below for an explanation.)

How do you now exercise, make love, or go swimming? Some people refuse to leave their houses after this surgery. Meet Chris who did an Iron Man race after his colostomy.

Listen to our interview about his view of living with a colostomy and ways to not only cope but to thrive.

Chris also shared some good thoughts and resources below.

1. The big three ostomy appliance companies are:

Often your hospital will have a contract with one of these companies and that will be the brand you are sent home with.  If those products don’t work well for you, contact the other companies directly and they will send samples to you.  So do some research and try different things until you find what works…don’t feel stuck with what you got when you left the hospital.  Try products from all three companies if necessary.  

2. Hollister is the largest of the three and is located in the US, but their products are available all over the world too. They offer a service called Secure Start.  It’s really an awesome service staffed by a few dozen people who do nothing but help people with ostomies.  The nice thing is that they will help anyone…you don’t have to be a Hollister customer.  If another company’s product is right for you, they still will help you.

3. Ostomy support belts and garments can be a big help and are most often purchased from a smaller specialty website and not from the big three ostomy companies.  They range from inexpensive maternity ‘belly bands’ sold at Walmart for $20 to more specialized, better functioning belts made specifically for people with ostomies for close to $100. 

Wearing the basic ostomy medical products (the wafer that sticks to your body and the pouch that collects output solves your basic medical problem but still leaves a few concerns, particularly for active people.  Those include:

  • Does the pouch show through my clothing…can everyone see this?
  • As it fills and gets a little heavier, will it pull off my body?
  • Will it get caught on something at work and pull off or will a grandchild or pet accidently pull it off?
  • What about exercise…how do I jog, swim, do yoga, etc….with this hanging loosely inside my shirt?
  • What about sleeping and intimacy…is there a way to make things more secure and discreet?
  • It’s shocking when I look in the mirror after a shower and see a prominent medical device dangling from my abdomen…is there a way to disguise it a bit so I feel more like myself again?

As for cost, yes $100 for an ostomy belt is a lot of money.  On the other hand, it should last you 1-2 years.  So it’s about $0.25 per day to have your life back. And these more sophisticated belts are made completely differently from a maternity band…the support and enclose the pouch which makes it invisible to others while still allowing it to function normally.  People often try a maternity band and then decide to upgrade to a belt made specifically for ostomies.

4. For all around support, the Stealth Belt is a good choice.  https://www.stealthbelt.com

They offer a basic adjustable belt for everyday & exercise and a really comfortable ‘Slip-On’ one for bedtime.  They also have styles for more extreme pursuits like surfing with belts made out of neoprene, like a wetsuit.  And they make fully custom designed belts for people with very special needs such as a double-ostomy or a large hernia to control.  Standard mens, womens, and childrens belts are available for immediate shipping.   Stealth Belt also owns ComfortBelt in the UK  https://www.comfortbelt.com. and offers free next shipping in the UK.

5. For specialty lingerie and garments, Vanilla Blush in the UK has really nice things.  https://www.vblush.com.  Comfizz is also a great resource  https://comfizz.com

6. You can find lots of great info at Vegan Ostomy. https://www.veganostomy.ca including independent product reviews.  Eric’s videos provide a wealth of knowledge and are really well done.

7. Another great resource is Laura Cox at Shield Healthcare.

8. As for inspiring stories that help you see what others with ostomies are doing, this page on ComfortBelt has links to those.  https://www.comfortbelt.com/blogs/blog/people-who-inspire.  

Chris triumphantly finished an Iron Man race with a colostomy.

9. And another place to see what people with ostomies can accomplish is on Stealth Belt’s Ambassador page: https://www.stealthbelt.com/become-an-ambassador

Thank you Chris!

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