Discussing Ostomy Bag Concealment and Body Image Concerns

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heshootshescores
Mar 21, 2013 10:54 pm

Ok, I'm wanting to talk about not wanting strangers, other people to see your ostomy bag. I went through a time of constantly hiding my bag under baggy clothes whenever I went out, and it became a routine that I did all the time. I found that years had passed and I had a secret that was becoming a problem. This made me develop body image issues about what I looked like to other people, all because I had ostomy surgery. This got to the point where I had doctors recommend making the ostomy permanent for my health. This was a blessing, a wake-up call all rolled into one. It made me actually address these issues about what I looked like because I'm thinking it would have gone on until, I don't know, I became OCD or something similar. It's weird too because I still sometimes vomit like someone with anorexia or bulimia, and I think that's just because it's a similar mentality. Since I recovered from surgery, I've been exercising to try and get fit and some strength back. It makes you feel better about yourself. I also am sure that I'm getting out there and people see me skateboarding with an obvious ostomy pouch and it's helping me get over what I look like. It's helping me move forward from something that occurred 13 years ago. To make me look at my life in the now and do something rather than sitting staring at the walls. I literally would sit and stare at the walls and didn't even realize I was doing it! I was such a space cadet! So this is about something I think is a common situation.

Bill
Mar 24, 2013 9:59 am
Hello heshootshescores.  Thank you for sharing your experiences and feelings in this post.  Withdrawing and having body-image issues in this way is indeed not uncommon when people feel negatively self-conscious about something they perceive to be relevant to their social standing and their self-esteem. It is great to hear that you are now doing something positive to change your outlook and your lifestyle - well done and congratulations . This sort of achievement is an inspiartion to us all.  Best wishes

Bill
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Bill
Mar 24, 2013 11:43 am
Hello again.  Your post has raised a concept that was too good to miss for a rhyming verse so as a thankyou for the subject matter I have blogged the verse arising from your sentiments.

Thankyou so much for the concept Best wishes

Bill
greenfairy
Mar 27, 2013 2:19 am
Hi, I don't want to downplay your worries or situation in any way, but for some reason, I don't know, maybe where my Ileostomy is placed, I have had numerous friends that know about it tell me over the 13years I've had mine that they can't tell I even had one, that they forget I have one, it is unnoticeable. I am very thin, wear underwear that come up over almost all of my bag except the very top and I empty anytime there is stool that is not just at the bottom of my bag. If I can't empty for some reason and my bag is ballooned out a bit, it just looks like I have something in my front right pocket of my jeans. I just thought maybe some of these things I do may help you, so I decided to reply. Don't know if I helped, but I hope that I did. Good luck, Green Fairy.
Gypsy
Mar 28, 2013 6:03 am
Hello, have you seen an ostomy nurse regarding the fit of your pouching system? I have a permanent ileostomy and through support groups have met many ostomates and I have never seen anyone whose pouch would show the way you describe yours. I'd strongly suggest seeing an ostomy nurse (W.C.O.N.). It could be a combination of things, such as eating gassy foods that make your pouch balloon out, the wrong size or type pouch, etc. etc.



Good luck!
 

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theiko
Mar 28, 2013 3:21 pm

I have a urostomy and have found that by wearing extra-long T-shirts, I am able to wrap my
pouch in such a fashion that there is nothing showing through my clothes except a natural pant line. I hope this will work for you.

petea486
Mar 28, 2013 9:15 pm

Hi there,
I've had a urostomy for two years and I look at it as a prosthesis, just like a hand or foot prosthetic replacement. During the summer, I wear a micro pouch & leg bag with shorts or a bathing suit with no problem. I do get some stares and some questions; I respond with, "It was bladder cancer." People are more understanding than you think; be bold and positive.

Pete

GA cyclops
Mar 28, 2013 11:31 pm
For my urostomy, I use the Coloplast Sensura Click 2-piece system and they make a pouch which has a tan-colored film on the outside. That hides the white plastic ring and stoma very effectively, so I can even wear summer-weight shirts with nothing showing through.
Schnecke
Mar 29, 2013 3:11 pm
Thought I would add that the classic wrap from Ostomysecrets.com is fantastic. I have to wear my bag over my pants and this, with an untucked shirt, makes it not noticeable at all. Good luck!
heshootshescores
Apr 02, 2013 10:34 pm

Hello everyone who has replied. There have been many suggestions about my problem. It has me thinking about contacting my stoma nurse soon to ask about different types of pouches. I have changed the types I use only a couple of times, so there are many others that I can try too. I am curious to find a better fit/system. Thanks for the advice. I am getting the concept that people are more understanding than I think into my head; it's a stepping stone or a hurdle or something.

Neil.

Londonw9
Apr 02, 2013 11:24 pm

I have found pleated front trousers a good start. Also, I don't make an issue of it; no one other than immediate family knows, and my permanent op was some 15 years ago.

Past Member
Apr 03, 2013 8:47 pm
My colostomy isn't one year old yet, but it is already prolapsed. Even though I wear very loose clothing, mine protrudes about 4". Also, for some reason, my ostomy site looks like a volcano. Any suggestions that do not include surgery?
heshootshescores
Apr 09, 2013 11:14 pm

Hello again, today I'm walking around and I'm wearing a white T-shirt where you can see my ostomy bag sometimes and sometimes it is not noticed. I am thinking about my body image issues and how I don't want people to see my bag, but I don't want my mental health going backwards either. Yet, I am aiming to be positive about the situation. So, it is a balance of the two, not disguising myself and not running away from my problems.

To star_gazer, go to a doctor and or a stoma nurse, talk to 3 or 4 if you have to so you get an opinion on what you can be doing. Please don't get offended, I'm not a doc or an expert or anything!

Past Member
Apr 11, 2013 10:54 pm

To "heshootshescores," no offense taken. I think I'll take your advice and see what he or she would recommend.

heshootshescores
Jul 01, 2013 12:09 am

Hello, so it's been a while since I've read anything.

I'm going through the same thing where I think people notice my bag. I think it gets noticed and I experience paranoia with this situation. I think that the world revolves around me or something. I get the impression people think I'm hiding something, so I'm paranoid and think something else is going on. I keep getting the message that people don't even notice the bag at all, and when I look around, usually no one is looking or even interested in what I'm doing. Then I feel like I just want people to leave me alone. Why am I thinking something is going on when no one is even paying me any attention?

Yet, I encounter problems with other people constantly, like I'm being stared at.

I have managed to find a different bag to use; this one is helping my skin to heal. The last one I was using seemed really good, just after a year and a half I've gotten pressure sores around my stoma where the convex flange pushes into the skin. It seemed like the skin there was getting thinner and thinner and that wasn't going to change. So, I am changing to a flat bag with aloe vera in the glue to help my skin heal.

I am getting more optimistic than negative about my life.
Goodbye.

MissMeganM
Jul 22, 2013 6:26 pm
Glad you're feeling better!  I worried about the same thing at first but got over it very quickly.  I feel the same as another poster said, I look at it as a prosthesis.  I didn't ask for an incurable disease, I didn't ask to have an ostomy, I didn't ask for any of this.  All I can do is cope with bravery and class and THAT is what people notice about me, not my ostomy.  I wear skin tight clothes all the time and if I didn't choose to tell someone, they wouldn't know.  I ordered ostomy wraps that snug around your waist and have an inner pocket where you stow the pouch so you can't detect it under my clothes, and I ordered a special bikini bottom from ostomysecrets that is along the same lines.  That's right, I wear a BIKINI AT THE BEACH and no one would ever be the wiser if I did not choose to tell them.  The way I look at it is, I survived against pretty dismal odds and now I'm healthy and happy.  And if someone has a problem with that, then they can kiss my bag

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heshootshescores
Aug 03, 2013 10:49 pm

Thanks, MeganM, you have opened my mind to the different ways that other people experience their stoma. I had not looked at it as a prosthesis before.

New way of looking at life, and it's logical how you explained it's an incurable disease. This is something I failed to grasp when I was a teenager and struggling with what a Crohn's diagnosis meant. My focus has been and was wanting to be like everyone else; incurable didn't really enter my head, the outcomes, long term, weren't there either.

Bye

MissMeganM
Aug 06, 2013 6:47 pm

I understand; I have Crohn's too, and it is NOT FUN. I think of it kind of like being diagnosed with cancer that has no cure (but more than likely won't kill you... at least not outright). For whatever reason, we have this disease, and we can't change it because if we could, we would. It's just like someone who has bone cancer and loses a limb and gets a prosthetic one in its place. We lost part of our insides, so we have a prosthetic that takes its place. It's nothing to be ashamed or embarrassed of. I think that, of course, some people in this world are very shallow and ignorant and probably wouldn't understand or accept our disease or our prosthetic, but that's fine because you know what? I don't like shallow and ignorant people, and they aren't the sort of folks I want to surround myself with.

It's all about perception, my friend
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