Feeling Different: Sharing Our Stories

Nov 18, 2022 7:54 am

Hi mates, haven't been on site for a few years.. I walked into the grocery store today and looked around at the people doing their shopping, cringing at the prices, checking their lists, just doing the routine they do to live.   I wonder how many individuals I walked past who have a bag like me. How many have gone through the surgeries, and pain, and if they feel different from others. We don't have a sign on our foreheads, or tattoos that brand what we are. Till someone sees you unclothed...you're safe, we feel shame to show a normal person what has been done to our bodies. Somehow we are a little less whole. I would love to hear from other "Mates" who may feel the same way. Thank you

Nov 18, 2022 9:16 am

Hiya Rusty:
I must say that that is something that I've never thought about. I'm just happy to be alive~ I don't feel any shame in my ostomy, as I feel like I'm so lucky to have it. Don't ever feel that you are less than "whole" - you are amazing and we are all warriors!

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Nov 18, 2022 3:08 pm
I feel neither "shame" nor "less whole" because of my ileostomy. 99% of the people that I deal with have no idea that I have it, and anyone who discovered it and reacted negatively wouldn't matter to me anyway.
Nov 18, 2022 3:30 pm

Hi Rusty. Personally, I have zero shame about my stoma. I didn't choose to have it. It was something my body just gave me. Just as it gave me green eyes. If someone has a problem with my green eyes or my stoma, it's their issue and has very little to do with me. I don't make a point of telling people about it but if something relevant comes up in conversation I'll mention it. If someone wants to see it (rare but has happened) I have no problem showing it to them. If showing it creates an issue, it's theirs. So far it hasn't, though. For whatever it's worth, that's my personal thought process. I get that it may not work for everyone but it works well for me. I hope some part of it works for you too. Good luck.

Nov 18, 2022 7:07 pm

One time while going through security at San Francisco Airport on a 12/14-hour flight to Ireland, the security/TSA guy was being an a**hole. Usually, I wipe my hand over the exterior clothes, they wipe a swab cloth over my hand, stick the swab in the scanner, and off I go...usually. This smartass brought me to a room for a search (using me for training purposes and wasting everyone's time). He went off and left me "supervised"...by another guy. I unzipped and dropped my drawers, lifted up my shirt, and told him, "This is an Ostomy, do you get it now, do you know what this is?? Well, if you didn't, you do now, this is how I shit these days, I can open it if you don't mind the stinky smell??"
He turned bright red and didn't know where to look, he was so embarrassed he was shuffling his feet and wanted to get out of there. No...nooo need to see it "aaaa...aaaa..he was speechless. The other guy knew what it was and was disrupting my day and being a p***k.
I finally leave the room when the other guy comes back. My carry-on and backpack were empty and the contents strewn on a table in the public area, my change of clothes, extra supplies dumped and the guy says, "You can go now." Fifteen minutes to repack all my stuff. When they stop you for any reason they can add an hour to your security check.
They should have been ashamed of their behavior, not me. This was a few years ago, never had a problem since. Now I go to the beach with my Baggy blowing in the wind, no shirt or shame and any funny looks get an extra close-up view of my Bag. Nobody seems to notice it or care in Ireland or in California.
Be proud of your scars and your new "Plastic Colon"...you have paid your dues in pain and suffering to stay alive. Your Baggie is a Badge of Courage, wear it proudly, wear it openly at the beach, etc...Familiarity breeds acceptance and understanding!!
I would bet that the TSA guy will not abuse his authority like that again...maybe?? Some people are just too dense to learn but most are cool.
PS: Never argue with a TSA agent, a pointless exercise, in that security line that person has the authority/ability to ruin your whole day so always be polite...or you will end up missing your flight.
Security is much easier now, they have proper training to deal with medical issues. Don't be afraid to fly...except for the tiny seats all is good!!!
Magoo ??????

How to Manage Emotions with LeeAnne Hayden | Hollister
Nov 18, 2022 9:08 pm

Hi Rusty and welcome back to the site. I too feel no shame due to my ostomy, in fact I feel that I'm rather 'special'. I try to look at the positives, and there are many. The first one is that I'm alive and living a life that is better than the one I had pre-ostomy. I am not in constant pain and discomfort. I am the one in charge of my life, not my bowels, which used to be the case. I am not ashamed of my little pouch. It doesn't prevent me from doing anything I want in life. Many people in my life know about my condition and don't even give it a second thought. Then there are the added bonuses, like having the cleanest bum of anyone I know!


Nov 18, 2022 10:39 pm

The chances are that the only bag those shoppers carried was the one they put their groceries in, but there is no shame attached if some of us carry an additional one. The pain and the suffering shows in the eyes, they don't call them the windows to your soul for nothing.

Nov 19, 2022 3:53 am

Thank you everybody! I appreciate the love. Happy Thanksgiving.

Dec 05, 2022 2:18 am

I'm new. Mine is 5 months old. And no, I would not have requested it, but my colostomy saved my life. I try to stay really organized with supplies and eat well. A few friends know. Most people don't. But if asked, I would say God blessed me with a medical procedure and great doctors. I can still love life, hug my grandchildren and son, and play with my kitties and my 4-legged soul mate! Life is precious and good. Not so long ago, we would not have had the medical option of a colon replacement. Good luck and count it as a blessing.

Dec 19, 2022 7:05 am

Charlyne....you are a trooper. I admire your positive attitude. I have 3 adult children, a grandson, and 2 granddaughters. They have been my support team through some rough times. I do get teased sometimes but I can throw it back too. It has taken 7 years to feel comfortable with my bag. Boy, I hate summer heat, thought about putting ice in the bag because the plastic gets sweaty!! Lol I'm going to remember your words and ask myself HOW WOULD CHAR DEAL WITH THIS???? on those days when I am a little bit sad. Thank you, Rusty. Merry Christmas

Jan 09, 2023 3:08 am

A number of years after getting my bag, my wife of 34 years passed away. I wandered through life thinking it would keep me from finding a new love. I did, and it never was a big deal for her because she knew it saved my life. Being 64 now and having an ostomy for almost 20 years, it is now just part of me.

Charleston man
Jan 11, 2023 11:43 am

Hi Rusty
I have no shame in having my ostomy, and it doesn't make me feel any less whole than when I didn't have it. The way I see it is like this,
W - With
H - Having my
O - Ostomy
L - Life still
E - Exists
Just my opinion.

Ali Canada
Jan 15, 2023 9:54 pm

Hi Rusty. I am quite open about my ostomy. When I am at the grocery store, usually with my son, and the cashier asks, "Would you like a bag?", my son and I look at each other and smile. If someone finds out I have an ostomy and says, "Oh, sorry to hear that. Is it permanent?" I answer: Why would you be sorry? Yes, it's permanent and it saved my life - my choices were an ostomy or death. You have to change the narrative. I have no shame in having had colorectal cancer and now having an ostomy any more than someone with a heart condition who uses a pacemaker. I often use the ostomy to educate people about colorectal cancer and proper screening, early. I also use humor and remind people that every situation has a positive side to it, if not for that person, then for someone else who can learn from it.

Jan 20, 2023 11:02 pm

Sure, we're different just as everybody else around us is different in one form or another. I've had my ileostomy since October 2022 and have not felt a day of shame since having surgery. My username "happy to still be here" says it all. We are survivors, went through a lot and in my case, came through it the same person mentally I was before all this crap happened, pun intended. Never ever be ashamed and look at the bright side, if there ever is a toilet paper shortage again we don't have to run around like crazy people trying to find it! As you can probably tell, my sense of humor gets me through a lot.