Building Confidence with an Ostomy (w/ video)

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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

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 about 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 before hand?”

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.

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.ca

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

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!

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.

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.

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.

VeganOsotmy 2014 #GetYourBellyOut entry
I entered this photo in a calendar contest =)

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.

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Dona
Member

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.  

john68
Member

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.

dogtalkerer
Member

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.   

john68
Member

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. :-) 

Karen
Guest
Karen

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?

Robert
Guest
Robert

“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?

john68
Member

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 

sjlovestosing
Member

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

john68
Member

Any life changing illness is hard to come to terms with and one which needs some form of an aid like an ostomy bag even harder. Leaks, clothes, appearance very difficult problems to over come but their are solutions. Take a browse through the site for helpful advice. on the clothes issue for the ladies fashion offers many different solutions for all ages. Other folk being aware or seeing the bag, next time your in public take a good look around! people come in all shapes and sizes and not all supermodels. people have to use all sorts of aids to get around and most folk won,t even give an ostomy bag swollen up or partly showing a second glance, if they do its really their problem and we cannot put our life on hold just to please them. The better place will come for any one having difficulties, my personal note I remember going clothes shopping after my op. very under weight and sore and this bag thing. I tried on about 20 pairs of trousers and nothing worked. I had to leave without a purchase. I was in a bad way tired upset and not feeling very good. my friend who was with me suggested trying another shop and with much persuasion I did. first pair I tried on fitted and worked perfect. it was only a pair of trousers but it made me feel good!!! I could work with this and folks it will work.

Songbringer
Member

I feel your frustration about clothing, thank you for sharing, and for the reassurance…you are so right about people being all shapes and sizes. My biggest hurdle/personal battle is that it has really put a damper on what was once a life lived like a gypsy…always active and on the go…now I am at the complete other end of the spectrum. My 1st year with an ostomy was a year from hell. I literally had broken, bleeding skin, oozing peristomal skin that entire time…my whole abdomen under my flange was eaten to raw meat, burning and bleeding. Thankfully that is now all behind me. It has taken me 2 years of trying practically every company’s products and practically every style from these companies, trying to find the best flange and the best pouches. Because of my disfigurement, flanges would fall off in sometimes a matter of minutes…they weren’t adhering to my scar tissue. So, I finally found one that works, and am hoping they continue on the path they’ve been going. I use Coloplast’s Assura Deep Convex Flanges. They are amazing…they fit every groove, ridge etc like a second skin. Also switch between a hernia belt and an ostomy belt to keep my flange in my place.

Songbringer
Member

Thank you for this. I wish the day would come when this wouldn’t be an issue, but I don’t see it happening. It’s not an issue of vanity, as that has never existed in me. I went out once with my appliance slightly showing, and it was so difficult I never did it again. I felt like the whole world knew. My friend that was with me kept reassuring me it wasn’t noticeable, and the whole time at Timmie’s, I thought everyone was staring at me, although I had the reassurance of my friend that nobody was. My issue is that I am so horribly disfigured from multiple surgeries pretty much back to back, including Ileus so severe that my abdomen blew open through my incision (incompetent surgeon who ignored 10 days with no bowel movement post-op), it looks like I was attacked with a chainsaw. 2 years post-op and the disfigurement is still very prominent. I can not wear any of the clothes I used to wear pre-op, and that in and of itself is depressing. A closet full of clothes that just hang there never to be worn again. Plus with an ostomy that never stops and always leaking (seems to be under control now), I have ruined every piece of clothing I have worn since having this ostomy. My biggest issue is that I have psychologically not adjusted living with an ostomy, and don’t see that happening. Combine this with the trauma I sustained from a horrific and severely complicated 3 month hospital stay that nearly claimed my life twice, a week in ICU, a month on TPN, drainage tubes hanging out of me, and other horrific things I endured plus the out of this world pain I suffered, living with an ostomy is nothing shy of a complete nightmare for me. Needless to say, the whole ordeal has left me so traumatized, I have even more so retreated into my shell and hide from the world as much as possible. Sorry for this blurb…don’t mean to sound like a negative Nellie. I’d like to be at the point someday where I feel free to go out without a care if my bag/appliance is showing. How women wear a bikini in public with an ostomy is a place I know I’ll never be at. What makes living with an ostomy even worse is knowing that if I had a competent surgeon, I wouldn’t be in this situation. Now, when I do go out, I wear nothing but oversized pants (splash pants) that make me, with a very small frame, look like a clown. On the issue of sounds…I had a nurse suggest I tell people that it is my stomach growling…seriously? There is no comparison between the 2. I was in the grocery store once, and my stoma decided it was time to act up, while someone was about 6 inches from me in the same aisle. I froze in place so mortified, I was looking for the nearest crack in the floor to crawl into. He didn’t appear to hear it, as his head never even turned in my direction, but it still was very humiliating.

Susan
Member

I never had any of the “positive” experiences and whet I left gyre Hospital, too early to a horrible rehab facility, my Stoma Nurse hadca hard time getting me to cut my barrier etc, as I was not doing well frim the anesthesia and I cannot do anything BECAUSE I HAVE NO MONEY!!! I cannot afford a Stoma Guard, belt or a y other accessory as I have NI MONEY AND I AM SHORT WAISTED SO THERE IS NO HOOD WAY YI PIY MY BARRIER ON. I have 5 layers at my waist and after 2days from my fat everything just rollls down little by little unriom I change everything and start over.
Even my home Health Nurse could not apply the barrier without leakage on my incision and I had to go back to the hospital.
A year later, I have NO OSTOMATES TO TALK TO, the people I have talked to all have families and are not ALONE.
This just sucks abs I am HUGE!!!!
Cannot eat veggies with the skin, grits with the skin, whole grains, nuts, seeds or anything I ate before.
I have no wuakity oh life so wish is the point. AND I AN WAAAAAY OLDER THAN YOU and of I was 49 I would have more energy. I have my energy at all.
Sadly, I have all my papers I order.
and I pray not to wake up to this nightmare.
I am happy for you,
My life SUCKS!!!!

Kier at 180 Medical
Guest
Kier at 180 Medical

Thank you for always being such a great resource. This is a great video!

Sarah Elizabeth Hart
Guest
Sarah Elizabeth Hart

Thank you for all of your mini guides and advice. Your website is one of a few that have really helped to form my positive attitude toward life with an ostomy. It only has to be as negative as you allow it to be. I hate when people say that they are “sorry for me having a bag” or “wow that sucks you don’t have one you can reverse”. I LOVE my bag and the confidence it has given me to live my life. I would much rather have an ileostomy than have Crohn’s diarrhea and pain all day long. Thank you once again for inspiring me to grow to appreciate my ostomy!