Humiliating Colostomy experiences?

tennislover
tennislover Member Posts: 64
edited March 2014 in Colorectal Cancer #1
Hi everyone, I had a horrible night last night. I was at dinner with 2 friends and suddenly I felt something warm, I excused myself and realized that my bag leaked from the side and lets just say that it was the most humiliating, embarassing moment of my life. It may sound stupid but I ran out on dinner, didnt pay and just left. I was so upset, I was almost hystarical. It just made me cry then made me mad, I got so angry that something like this even has to happen. I was just wondering if there is anyone who has had a bad experience that they would be willing to share so I dont feel so discusting. Thanks.

Comments

  • KathiM
    KathiM Member Posts: 8,028 Member
    #2
    OH, sweetie....how AWFUL! I don't have a colostomy, BUT one of my dear friends does...she tells the story (I got her permission to share..hehehehe):

    She was out at the very first 'black tie optional' party since recovery. She had been very careful when dressing, making sure everything was properly attached. Well, something on her dress must have caught on her pouch, cause out on the dance floor, in front of very many sweaty dancers...she had more than just sweat on her thigh!

    She ran to the lady's room....swabbed as much as she could, hid behind a partition and flagged down her hubby, and left. (Thankfully, her dress was black....)

    The next day, she was thinking of all the stories that would be flying....But, to her surprise, she got many concerned phone calls, wanting to make sure she was ok.

    She still laughs about her 'sweat' problem, to this day!

    Hugs, Kathi
  • vinny3
    vinny3 Member Posts: 928 Member
    #3
    I have a colostomy and have had a similar problem. I am a physician and was doing some exams about an hour and a half from town. It seemed to me that my colostomy was giving off too much odor, everything had been fine before that. I checked and saw the material creeping towards the edge and knew it was going to come through shortly. I did not have any of my supplies with (I have since made sure I always have them). I raced back to town, rushed into my office and told them I would be right back. I rushed over to my ostomy nurse who changed it. I since have been using the Eakin rings which help to seal it. Talk to your ostomy nurse to make sure you have the right kind of appliance. The convex (concave?-I can never remember)sometimes has to be used or the Eakin ring, which I have continued to use works very well. My problem lately has been bags that don't vent the way they should and it then looks like I am carrying a balloon.
    ****
  • CAMaura
    CAMaura Member Posts: 719 Member
    #4
    I am so incredibly sorry for you. You will laugh about this...But, I fear, not for a while. Hearing anything like this allows me to think just how strong you are. Seriously! I mean it form the bottom of my soul. So much has changed for all of us, but I am one of the lucky ones -- or few -- who did not need a colostomy. In my future, who knows...But for now, I am just in awe of your strength. So, what is up with the mechanism that is supposed to keep everything in tact for you? LORD! I hope you receive some great posts giving you more useful info...In the meantime, know that you kick it in the heart and guts department. AND, that day passed; you are still here...and you will laugh about it -- in a while, I guess - ? All the best to you and make another reservation for dinner with friends, okay? Take care - Maura
  • cal79
    cal79 Member Posts: 57
    #5
    I had an ileostomy for 7 months, and although incidents were infrequent, they did happen - especially in the early days. My first big night out after surgery was a disaster. With an ileostomy, the output is constant and very runny. Halfway through dinner I felt some warm bubbles around my tummy and thought 'oh shi%' (literally). I excused myself (very quickly) and took my bag to the bathroom, where I had my emergency supply. I managed to clean up and change, and only left the room smelling a tad unpleasant. I returned to the table and sat for about 10 minutes feeling very pleased with myself for averting such a disaster, when the emergency bag decided to fall off. Now I was completely screwed, because I had to stand up with all this watery stuff seeping through my clothes, and then drive home (45 minutes) with my handbag and scarf stemming the flow. Have to say, I was mortified. Never happened again though, and the nurse did say to me that the first time something goes wrong is always by far the worst. Don't be embarrassed about running out on your friends - I'm sure they would do the same in that situation. And don't feel disgusting - you are far from it.

    Cal :)
  • jerseysue
    jerseysue Member Posts: 624 Member
    #6
    I've had a few some with people present and some on my own. I couldn't keep enough pouches on hand (only now I know it was because of my colitus) I was driving home from a friends house which I shouldn't have went to begin with because I didn't have the right "pouch" I used a ileostomy bag which doesn't work for a colostomy but that was all that the medical store had for the weekend. Well needless to say it came out everywhere and I had to drive in that stink for over 30 mins. I don't get mad anymore just glad I'm still here to hear the kids fighting.
  • nanuk
    nanuk Member Posts: 1,358 Member
    #7
    I've had each one of these experiences in six years of wearing a colostomy bag, but the most difficult was in a small aircraft while flying a search mission; the pilot had indicated he was going to land enroute for fuel, so I figured the
    gas in my bag-(which could clear a room) would stay confined in the bag until we landed. The pilot decided he had enough fuel, and continued on to our base of orgin, which left me with a decision: let the bag blow up until it broke the seal and sent stool-(and odor) throughout the cockpit, OR, release the clip and sneak the gas out little by little. I chose the lattter, and watched the pilot open every vent in the aircraft
    one by one over the next 30 minutes. Although the source of the foul air was obvious-(I was the only passenger) nothing was said...but this pilot never requested me as an observer again.
  • nanuk
    nanuk Member Posts: 1,358 Member
    #8
    vinny3 said:

    I have a colostomy and have had a similar problem. I am a physician and was doing some exams about an hour and a half from town. It seemed to me that my colostomy was giving off too much odor, everything had been fine before that. I checked and saw the material creeping towards the edge and knew it was going to come through shortly. I did not have any of my supplies with (I have since made sure I always have them). I raced back to town, rushed into my office and told them I would be right back. I rushed over to my ostomy nurse who changed it. I since have been using the Eakin rings which help to seal it. Talk to your ostomy nurse to make sure you have the right kind of appliance. The convex (concave?-I can never remember)sometimes has to be used or the Eakin ring, which I have continued to use works very well. My problem lately has been bags that don't vent the way they should and it then looks like I am carrying a balloon.
    ****

    I've tried all the so-called self venting bags, and not one of them have worked. I have resolved to just find an out door or private place to breach the monster before it blows..there is one brand that exceeds all others in terms of strength and reliability-e-mail me on this site if you would like the information. Bud
  • Kanort
    Kanort Member Posts: 1,272 Member
    #9
    Bless your heart. I am so sorry for your ordeal, and thankful for all of the other semi-colons who have graciously shared their stories. Hopefully, this will be your first and last such experience.

    Hugs,

    Kay
  • tennislover
    tennislover Member Posts: 64
    #10
    Thank you all for sharing such personal stories. I feel better and I am so thankful to have a group of people willing to share their stories with me!
  • cherriann
    cherriann Member Posts: 155 Member
    #11
    hey just the other day i thought all was going well with the irrigation process i am trying until in the store with a cart full of groceries i started to feel warm and very stinky, left the cart and didnt look back,think i will stick to a mini bag until im more sure of this thing. i hope you will be able to laugh about this soon. and no you are not disgusting! hey we all stink from time to time even those with without bags. my husband stunk up the house so bad the other day we had to open the windows in the freezing cold. keep your head up it can happen to anyone even those with a ( normal) working system.
    take care, cherri
  • taraHK
    taraHK Member Posts: 1,952 Member
    #12
    I am so sorry you had this experience. I have had a number of accidents since getting a colostomy 3 years ago. The first time I cried. For me the important thing to remember is that, almost always, no-body else is aware of what is going on. People do sometimes have to leave a function/work early. Nobody needs to be the wiser. Meanwhile, do carry extra supplies at all time. And, I keep a change of clothes at my office and one in the car. I hope this never happens to you again.
  • scouty
    scouty Member Posts: 1,965 Member
    #13
    Tennislover, I am so sorry you had to go thru a "nasty experience". I had a colostomy bag for 2 1/2 years and had my share of embarassing and what I thought were horrible experiences but I have to tell you that they pale in comparision to the ones I have had since I got the "bag reversed" and had a foot of my lower colon removed. I poop in my pants at least once a week (thankfully that is much less then it was a few months ago). Like some others here have said, I take a change of underwear, clothes and other handi wipe thingies with me everywhere I go. I keep telling myself, be careful what you ask for!!!!!!! When you think it can't get worse, sometimes it does.

    Try to hang in there and learn from it all. We ARE very lucky to be able to have the "nasty" experiences, given the alternatives!!!!!!

    Lisa P.
  • crazylady
    crazylady Member Posts: 543 Member
    #14
    I've had a colostomy for 2 1/2 years and have had a few humilating experiences. The worst was last month when I was in the hospital after having surgery. I'd had no output for 2 days and I knew I was in trouble. I was laying in bed and all of the sudden I had the runs. The pouch was full and BM was everywhere, running down between my legs and up to my chest. The whole room stunk. The care in the hospital was awful. The nurse and the aide argued about who was going to deal with this and it took them 45 minutes to decide to tackle it together. Neither of them knew anything about colostomies and I had to give them step by step instructions. It was very humiliating at the time, but they made me so angry that now I find it amusing and figure they got what they deserved for being so rude! My good friends and relatives all know about the colostomy and when I was working I educated everyone there after I had an accident. I always carry extra supplies and a change of clothes with me. It's all just a part of my life.
    Jamie
  • nanuk
    nanuk Member Posts: 1,358 Member
    #15
    When you think about it, we are not unlike young babies under 2 yrs old; they poop whenever, and think nothing of it; we just need to carry plenty of diapers-(bags) Bud
  • Moesimo
    Moesimo Member Posts: 1,072 Member
    #16
    I have had a colostomy since 1/05. I think we all have terrible stories to share. Before my colostomy I had had a ileostomy reversal and had many more "accidents" than I do now. This whole thing really sucks, but I try to make the best of it. I now irrigate and it has made life with the colostomy better.

    please email me through this site, we can maybe help each other.

    ps During the summer at the rehearsal dinner for my daughters wedding, I wore a "girdle" to look thinner. Right after the dinner, I noticed the odor. I quickly excused myself and went to my room to freshen up. Luckily we were staying in a hotel. I always carry extra supplies with me just in case, and have had to use them.
    I did not wear the girdle for the wedding. The wedding was perfect and I was very concerned about the "what if"

    When I do have to run to the bathroom, I always tell my husband, "wardrobe malfunction."

    Maureen

    I just thought of another story, at my last cat scan in May, it took 6 tries to get my IV in. While 2 nurses were looking of a vein, I had both arms wrapped in hot towels and the contrast began working. There was an explosion, I ran to the bathroom and cried. After the cat scan I met Judy on this site for lunch, I had no change of clothes and I am sure that I didn't smell too good.

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