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. Hi Karen, Eric is right too many guys bottle all sorts up and when it comes to a head it a far worst problem. This may be an unplanned opportunity your brother has never had. Slow and steady every ones personally is different. wishing him all the best. :-) 

    Reply
  2. Hi Eric,

    I don’t have an ostomy, but I’m related to someone who has one. I have a question:

    To what extent do people with ostomies go to hide them?

    Recently my brother and I decided to take a short road trip and we traveled via plane. When we departed from our city, we got thru TSA security very quickly. I made the air travel reservations and because of my job, I was able to get TSA pre-check for our departing flight but for some reason not for the returning flight.

    For me, it was no problem. I’m a type-1 diabetic and I use the insulin pump. I’m used to the drill–touch my finger to my site and then touch it to machine and and wait for the green. Re attach my pump.

    But going through security, I found out that my brother has an ostomy. I know he had cancer and that he had surgery to remove the tumor five years ago! He had the ostomy since then and has been keeping it a secret (his wife–my sister in law) is the only one who knew about this. When I asked him if Mom and Dad knew, he said no. He further told me not to tell anyone and not to tell his spouse that I knew.

    I’ve been looking stuff up on line about ostomies and the people that have them. Kudos to you for being so open about yours, but my brother seems to want to keep his a secret. How long can he keep this up? Shouldn’t he have shared this at least with family members? Or do a lot of people feel ashamed by their ostomies?

    Reply
    • Hi Karen,

      Thank you for taking interest in wanting to learn more.

      There are so many variables when it comes to how someone may act once they have ostomy surgery. Some people do feel ashamed, embarrassed, angry, and uncomfortable. Others proudly embrace it.

      While I would never look down on your brother for trying to keep it a secret, I feel that it will cause him more hurt and anxiety in the long-run. If his ostomy is temporary, which is often the case, then he may be able to keep it a secret for long enough to have the reversal. But if it’s permanent, he may run into situations where not sharing with someone that he has an ostomy may cause more trouble than it’s worth.

      I don’t know much more about your brother, other than that he’s your brother. But if he’s the type of person who may be receptive to finding support, maybe you could gently tell him that you’ve come across people with an ostomy online and there’s a lot of positivity he could gain from it :)

      I will say this: talking openly about having an ostomy isn’t very common among men. This has been something I’ve been trying to change, but whether it’s cultural or societal, very few men feel comfortable talking about it. That said, I have many men on my Community Forums and social media is full of guys (of all ages!) who have an ostomy and aren’t shy about it!

      If your brother is ever open to talking about it – I’m here.

      Eric

      Reply
      • Thanks, Eric. And I thought I went through some “body positive image" problems when I first got my insulin pump at age 9! It seems like body positive is an issue for many people with ostomies.

        He made my “pinky swear" (and you know the sacredness of the sibling pinky swear) not to tell anyone or even mention it, so I won’t. I guess there’s worse kinds of secrets to have to keep.

        Reply
        • Hi Karen,

          Nearly everyone has some form of body positivity problems, with or without an ostomy. If he’s not comfortable, don’t push it. He may open up in the future, but it does have to be on his terms.

          Take care, and thanks again for wanting to learn more.

  3. “I’ve heard of several people who HATE their stoma, and my heart truly goes out to them"

    I hate to tell you this, but I’m one of those who hates his ostomy. I’ve had mine a little over four years. I lead a seemingly normal life. I can do almost everything I could before I had surgery. With clothing, I’ve had to make some changes, but generally I’ve figured out what almost works.

    But having an ostomy has destroyed my sex life. During the surgery some nerves were damaged and as I result, I became impotent. What few erections I’ve had are very weak, short-lived, and totally useless. I’ve tried Viagra/Cialis and a few other things, but to no avail. I haven’t had any sex since my surgery.

    At the time I was diagnosed with rectal cancer, my wife and I were going though a divorce. Things simply weren’t working out between us and we’d been drifting apart for quite some time. We don’t have children, so our divorce was pretty straightforward and we split on good terms. She still came to see me every day when I was in the hospital and helped out during my recovery.

    So anyway, I’m four years out from my surgery and again, zero in the sex department. I’ve tried dating a few times. With two different women, it got as far as a second attempt at intimacy (that is, with both women there were two failed attempts at sex). The second woman gave me the brutal truth with the “You’re a nice guy, but…." and she told me that the bag wasn’t the issue, but she didn’t wan to be in a sexually frustrating relationship and it was best for both of us to break it off now.

    I’m only 40 years old and I live a full life otherwise. People keep bugging me about when I’m going to meet someone I don’t date anymore, even though I’d like to. Dating is hard enough and having the bag is already one strike against me. What chance do I have with anyone if I ‘m impotent?

    Reply
    • Hi Robert,

      Thank you for writing. Impotence is a topic that I have plans to write about, but it requires quite a bit of research first. You aren’t the first to ask me about it, and there are many men who are suffering in silence, but I don’t want to offer suggestions until I know more about what treatment options are available first.

      I will suggest seeking groups (online or off) that focus specifically on supporting men who are impotent. I would also suggest speaking with your doctor about newer treatment options. Viagra and other drugs may help with blood flow issues, but not nerve damage.

      I would also invite you to post your questions and concerns directly to my online support group (www.veganostomy.ca/community/) to see if other men who are going through the same challenges can offer some advice and support.

      Hang in there!

      Eric

      Reply
      • Hi Eric!

        I guess I’m just venting my frustrations here. I feel that there’s still not much out there on impotency after ostomy surgery. I did try Viagra and Cialis, but to no effect. I checked out an ostomy support group near me, but the members were all a good 20-30 years older (I was the youngest one in the room).

        Still, I have my health back. I look at what other people with ostomies are going though and I’m in far better shape. I’m in a cycling club and we do rides that are 40-50 miles in length, So that’s something to be grateful for.

        Reply
        • Hi Robert,

          I have to agree, actually. Not many men want to talk about it, and that’s probably why the information isn’t out there.

          There are numerous studies highlighting this complication and there are quite a few treatment options, but they aren’t discussed. 

          Not sure when you tried those two drugs, but have you spoken to your surgeon (or urologist) about other options?  

  4. Hi Songbringer, It sounds like you have come a long way from a rough start to where you are now. you hang in their work on each day to get a bit further. :-D 

    Reply
  5. I just want to thank Eric for putting together this video. You are very real in presenting what can and may happen, but so positive in the presenting. This and all the other videos are giving me hope as a future ostomate.  (I am also following your advice so as to not be overwhelmed by all the information – I am taking this one step at a time.)God bless,Stella

    Reply

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