Building Confidence with an Ostomy (w/ video)

Building confidence with an ostomy

This is a topic that I really wish I could have written sooner, as I know many ostomates have trouble building confidence after their surgery.

Video

Building Confidence with an Ostomy
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Intro

When I was receiving home care after my surgery, many of the nurses commented about how well I was handling the situation.

They told me that many of their patients refuse to acknowledge their stoma, having a loved-one do appliance changes or empty their bag.

I’ve heard of several people who HATE their stoma, and my heart truly goes out to them – I can’t imagine having such a negative view of mine, since it saved my life and improved my quality of life 1000%, but I know that surgery can come as a shock to many, especially if their stoma was unexpected.

Confidence is what gets a new ostomate out of the house, and back to enjoying the things they want to enjoy. For many, that could include going on vacation to a sunny destination, dating or just hanging out with friends.

Regardless of the motivations, I think it’s important for new ostomates to build confidence as soon as possible, as I feel it sets the tone for the rest of the “relationship” they have with their stoma.

Note: This article covers confidence-building, which is not the same as building self-esteem (how we value ourselves).


Practice Makes Perfect

Let’s face it, we aren’t born knowing how to change an ostomy appliance or how to handle leaks, and it can be overwhelming at first. Learning how to change an appliance properly can give you the confidence in knowing that it’ll be secure and reliable.

Before my surgery, I was given a kit with a few ostomy appliances to touch and feel. I was told to put the appliance on my skin so that I could get an idea of how it would feel on my abdomen – so I did! It was great practice, and I also got a sense of how it would feel under my clothing or when it was full (I added water to mine).

Not only did it prepare me mentally, but it made me a lot more comfortable talking about the appliance with my kids.

If you have the option to test out an appliance before your surgery, I’m sure you will benefit from the practice, too.

“But what if I have emergency surgery, and can’t practice beforehand?”

In this case, I would hope that you have a stoma nurse available at your hospital to discuss the proper way to change your appliance.

They may change it a few times while you’re in the hospital, but will likely have you change your appliance at least once before they discharge you. Take that opportunity to ask questions!

The more you know, the better you can handle this new task.

I found that watching videos on how other ostomates change their appliance helped me tremendously in the beginning.  

While our routines may differ slightly, you’ll get an idea of what to expect with each bag change.

Of course, you can perfect the art of an appliance change at home, where you’ll learn what technique works best for your skin and stoma.

Info: Want to see how I change my appliance? Check out THIS video.


Good Appliance = Positive Experience

This is a very important point!  The only time I feel insecure about my appliance is when I’m trying a new one out for the first time OR when I’m using a regular wear wafer (which peels and won’t stick very well to my skin).

Chances are, you’ll be sent home with an appliance from a brand that your hospital has a contract with. This, however, may not be the best appliance for YOU, so it’s so important to try other ones at some point.

In addition to your bag and wafer, you should also sample other supplies that you’ve been instructed to use (stoma powder, barrier rings, barrier wipes, etc.).  But remember the golden rule of stoma care: Only use as many products as you need!

More does NOT equal better when it comes to using ostomy supplies!

Eric, VeganOstomy

Every major manufacturer offers free samples, and your stoma nurse may be able to request samples on your behalf, too.

Info: Click HERE to see my mini guide to various ostomy supplies.


Explore Accessories and Clothing Options!

Supplies are the things you need, like wafers and bags, but accessories tend to be things that can enhance your quality of life.

I group things like ostomy pouch covers, ostomy wraps, stoma guards, and support belts as accessories, and these are all things that can really boost your confidence when used correctly.

The feeling of a heavy pouch tugging at your abdomen is bound to shake our confidence once in a while.  Fortunately, there are accessories that can offer more support in the event that you can’t empty your pouch in time.

Other times, you may find that your pouch is visible under your clothing.  You can use things like ostomy wraps, support garments, and specialty clothes made specifically for ostomates. I’ve put together a clothing guide for MEN and WOMEN, which can give you some ideas on what to wear.

If you’re afraid of playing sports or activities that might deliver a blow to your stoma, try a stoma guard!

Info: For a list of ostomy accessories I’ve reviewed, check out THIS page.


Don’t Be Discouraged by Accidents – Learn from Them!

Ostomy accidents happen, and they’ll likely happen at the worst possible time – maybe it’s part of Murphy’s Law, who knows?

If you’ve followed my blog for a while, you’ll know that I’m no stranger to leaks and blowouts. There are many mishaps that I don’t even write about, but I do try to handle them all in the same way: calmly and by not panicking.

I have had my ileostomy bag since January 4th, 2016 because of cancer issues. I was browsing and found your channel like a month ago. March 1 was my birthday and I decided to go to the movies for the first time since surgery and I had a leak!!! luckily at the very end of the movie when the credits started to appear on the screen. I ran to the bathroom (almost ) and all the way over there I was thinking what you say in the video, you can freak out but it is not going to help anyways so better try to relax. I did and changed the whole thing, my clothes were dark and almost intact. Thank you for your tips :) love your channel!!! :)

misscrisstie via YouTube comment

While we often can’t predict when a leak will happen, we can be prepared for them, so my first line of defense is to carry an emergency kit with me.  Not only does this make me feel more confident about leaving the house for extended periods of time, it also gives me assurance that I’ll be covered if an accident does happen.

Info: For my guide on how to deal with appliance leaks, click HERE.


Build on Your Successes

Your recovery may be slow, but each day will bring you small victories that can slowly build confidence over time.

For me, being able to take the stairs to see my nurse was huge, and things continued to improve the more I got used to my ostomy, and the more my body adjusted to the change.

Even today, the foods I can eat, the activities I can take part in, and the time I can spend with my family continues to expand the longer I have my stoma.

Take these small steps as big accomplishments, because they will eventually lead you to great things!

Ostomy accomplishments collage
Things I’ve done AFTER ostomy surgery =)

Connect with Others and Share Your Experiences

Be a mentor to others!

Sometimes, helping others can go a long way in building our confidence. You can do this through online communities, local ostomy meetings, or even through a mentorship program.

It doesn’t matter if you’ve had an ostomy for a few months or for a few decades – if you can share helpful information, it will help YOU as well!

Keep in mind that I do have my own rules for support groups, but if you can offer positive support, then someone out there will benefit from it.


But… The Smell!

As ostomates, we are lucky – I mean, really lucky! It’s not easy to produce odor-free stools, yet with the abundance of products that specifically target ostomy pouch odor, you might have the most odor-free bathroom on the block!

The reality of human waste will be the smell, so don’t let a bit of ostomy pouch odor rattle your confidence. Remember, an appliance should only smell when you are emptying or changing it, so if you notice an odor at any other time, you likely have a leak to deal with.

Info: For tips on how to fight ostomy odor, please refer to my guide HERE.


Don’t Be Afraid to Strut Your Stuff

This one can be a bit scary, but once you get over that initial fear, and you feel comfortable doing so, showing off your bag (and the scars that might have come with it) can be a huge confidence booster!

Positive body image can go a long way when it comes to accepting your surgery, and there is no value in self-shaming.  

I know, we are all hard on ourselves when it comes to what shape our body is in, what weight we are at, or how many visible scars are showing, but these worries come at an expense: lowered confidence and often poor self-esteem.

It’s time to turn that around and take control over your own thoughts.

For some time now, I’ve seen how powerful campaigns like #getyourbellyout can be in boosting one’s confidence after surgery. Don’t believe me? Check out these search results: 


Closing Thoughts

While our confidence may be shattered after learning that we may require surgery, it is something that we can build up again – and we MUST build it up in order to be a successful person and ostomate.  Attitude is EVERYTHING when it comes to being a successful ostomate!

The process may come slowly, but you have an opportunity to learn and grow each and every day. Use those days to your advantage, and don’t be deterred from trying something new.

26 thoughts on “Building Confidence with an Ostomy (w/ video)”

  1. Same for me. People are of course free to do whatever they like.  For me it is just part of me. I don’t promote it or hide the fact that I have an ostomy. I am neither proud or ashamed of it. Just grateful.All my family and friends know . They were also just happy I am alive.People in my neighborhood noticed when I was sick and was not on my usual morning walk and knew I was very ill from my husband who was walking the dog alone. Many asked me about my illness when I returned after my surgery. I was forthright and gave as much info as they seemed to need or wanted.  The only thing that used to annoy me was when people asked ( understandably) what they could do to avoid it or what I had done to myself to get it. I patiently just explained about the autoimmune disease I had. So many people also had stories of IBD in their family. There are at least 6 people I have met that have stomas or who are still struggling with IBD. One friend told me of a great uncle who died of something that they called ‘jumpy belly’ at that time. IBD??? maybe.  

    Reply
  2. As I stated previous, I too will and do not judge any one for their choice to keep the ostomy a secret. But no matter how well this can be done it will cause problems like the ones pointed out by Eric. What about dating!! I would never have met my wife or had the normal amazing times I had if I had been hiding the ostomy. My job business could not have continued without people knowing, so was I to give it up. I could not have helped another ostomate I met shortly after my stoma who was in a bad way. As for trying to keep up or catch up with the strong! well some of the strongest people I know are the one who cope with and survive serious illness.

    Reply
  3. vegan, re read the logic article from your friend you posted.  the comments you are making come directly from  that article.  look at your own membership, then look at UOAA memebership, very very small numbers compared to the vast number of stomas out there.  as the article states, your sample size  is way too small to be making the statements you are making.   the predictions you are making about karens brother sound very biased  and without evidence. I’ve told very few people in the 10yrs I’ve had the stoma/bag.   I see no faults in doing this nor can I imagine any problems I could  possibly cause myself.   some of us guys , and some women for that matter,  are stronger than others and I always find it funny that the weaker often wish to pull the stronger down with them.  I’m in the middle, and prefer trying to catch up to the stronger than me.I hide mine cause of the old saying, “outta sight, outta mind" it works well for me.   

    Reply
    • Posted by: dogtalkerer

      vegan, re read the logic article from your friend you posted.  the comments you are making come directly from  that article.  look at your own membership, then look at UOAA memebership, very very small numbers compared to the vast number of stomas out there.  as the article states, your sample size  is way too small to be making the statements you are making.

      Can you explain which statement specifically is problematic? I wrote what I did based on my five years of working directly with patients, nurses, industry and what’s been reported in published research. 

      I’d be happy to expand on specific points if you can tell me what seemed off. 

      the predictions you are making about karens brother sound very biased  and without evidence.

      Again, my statements come from years of working directly with people who have ostomies and those who care for people with ostomies. When I attend nursing conferences, they report over and over that many ostomates feel ashamed and embarrassed. But through my advocacy work, I know that there are still many who feel the opposite. 

       I’ve told very few people in the 10yrs I’ve had the stoma/bag.   I see no faults in doing this nor can I imagine any problems I could  possibly cause myself.

      I’m glad you’ve been able to do that for the last decade. 

      Let me give you an example of how hiding it might be problematic. 

      Say you have to meet a client and you’re running late because your ostomy leaked. You could apologize and make up an excuse (lie), but what if that happens again? What if your boss asks why you keep missing these appointments and meetings? I don’t see lying as a viable option, nor do I believe that keeping the ostomy a secret will do any good. 

      Say you take another ostomate who hasn’t been having much luck getting their high-output stoma under control. This person may be embarrassed that they’ve had to cancel going out with friends, but they don’t say why. They may lose friends who may be otherwise understanding. How will this benefit the person? 

      I’m not saying that we should tell everyone and anyone, but going through great lengths to keep it hidden from family, friends or coworkers can and will backfire for most people. 

      On the flipside, many people who are open report being happier, more comfortable, and receive more understanding from those around them. 

      I see no reason not to be open if you’re comfortable doing so.

      Reply

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