I hate my stoma bag

I've recently been told they can't reverse my stoma bag.,I'm devastated as I really hate having it. Many a time I have woken up covered in my own ****, it's degrading. I was standing in a line waiting to go into a shop when I noticed **** all down my trousers and my shoes, I was mortified. My wife has left me and I'm now apprehensive about meeting new people and how they will react to me having a bag. 

  • I dated a guy with a stoma bag, it didn't bother me in the slightest and when he told me, it was a case of....oh....why's that? Are you better now? Yes? Good - and that was it. 
    He was such great company, the bag didn't get any thought - even when I saw it, there were better things going on at that time to care about it, if you know what I'm saying...:love:


    I can't honestly imagine any girlfriends of mine turning down a guy with a stoma bag.....it would be like turning someone away for having toenails or hair...it just wouldn't make any sense to do that.

    So....Do you know why is it leaking randomly? Who would you speak to in your medical team about getting this sorted? 
     

    I am sure there is a gent on here who I see around who also has a stoma bag...I hope he sees your message too xx

  • Hello davey,

                       l well understand your frustrations,l was lucky to have had mine reversed after 14 months but it came with a very, very large bill to be paid for doing so.In my case l reacted to the adhesive,so my site never healed and l trying to stick bags onto raw ,bleeding skin, which does not work well. In the end if l found a bag made a good attachment,l was flushing the contents out whilst still attached to me and l could get two days,maybe three before changing.

                                                                                                                                   There are other types of bag that maybe work better, and belts that the pouch can be held in,but it feels like a stone age solution,and l always felt that surely a better solution could be found.All you can do now is see if you can find a better alternative to what you are using at present,which hopefully might prove a little more acceptable than you have at present,

                                                                      take care, David

  • Hi there Dave...

    I know that's really hard to live with .. I've got a bro in law, that took a while to get used to his ... l think that's rotten luck to have a relationship breakdown too .. a lot to take on ...

    All I can say is the way I coped with my cancer and l had a grade 3 breast cancer... and I had a total right masectomy... which after having 38 DD was a huge difference to having one "normal boob" and one scar ..

    But this is how I look at it every day when dressing ... I look at that scar, and instead of seeing the deformed chest .. I see the scar as my war wound ... it tells me of the journey I've been through .. it tells me, the surgeon took my boob, but gave me something back that was far more precious... it gave me " time" ... time with my little granddaughter... who was 5 then, I've now seen her grow to 8 ... and hopefully a few more yet .., 

    There's always two ways to look at things... like there's a head and tail on every coin .. l choose to look at heads .., and if someone feels that matters, then they are not worth my time ... life now is about trying to find one thing every day to make me smile ... 

    Like the last answer .. talk to your Dr or hospital team, tell them about those leaks, and ask how you can change things ... and if it happens again .. look round, hold your head up high,and tell them its from having cancer ... then those around you will understand .. and anyone that doesn't, it's their problem, not yours .. you can do this ... wer all there with you ... we all have a cross to bear ... but it's how we deal with it .. if you do, others will ... good luck ... Chrissie x

  • Thanks Chrissie, I appreciate you responding to my post. You are right, I know you are, but I think it's going to take me time to accept it. How's your health at the moment? 

  • Hi ...

    No it can take time ... my bro had lots of problems for a few months ... but he got used to it, and learned little things that helped, but reach out to others .. and hopefully you'll know your not alone ... 

    I'm o.k ... I just take every day as a bonus ... thought I was a gonna, as in the early hours after masectomy,  I was rushed back to theatre with a bleed in my chest ... they got out 1 and a half lettres of blood ... sorry : (( ..... so honestly I can't believe I'm still here .. so I don't look ahead ... just live in the day .. and try to make every day count ... even though I've got loads of health issues , but hay ho ... that's life ..

    I've now got a young granddaughter who is battling acute myeloid leukaemia ... and she's had chemo .. radio and stem cell transplant... and a few complications along the way ..and loosing her hair ... but at just 18 , keeps smiling .. and making the best of a bad situation ... I'm so so proud of her...

    I'm sure if we look at things differently, we learn to cope better .. but we all have bad days .. where we cuss at cancer and life .. have a good cry .. feel angry .. but then get back up again and back on with the boxing gloves .. and get ready for another round ... Chrissie x

  • Thanks David. I too have a bleeding sore stoma. I have been given some sticky washer like things that go over the stoma and the bag fixes to that also. This does ease the pain, but I have more problems with leakage when I use them. I also empty my bag while it's still attached and like you did, get two or three days out of one bag. I also use banana shaped sticky pads that go over the edge of the bag, this gives it a little more strength. With my wife having left me, my worry is how any future partner would react. 

  • Thank you for your lovely comments, I just hope i meet someone as open minded as you. I may have to speak to my stoma care nurse and see if she can offer a better solution for my issue of leaking. X

  • hello Davey,

                      l think any future partner would be starting from position with knowledge of your wearing a pouch.If they got past the first week armed with that knowledge you could be reassured of possible potential,if they walk away then there was no meaningful relationship potential to be had.And you might fall head over heels for a bucktoothed,flatulent,one legged,semi bald lady who becomes your everything!.Lifes a funny thing,so is love,and perfection is a scary thing to most people,and remember they may be worrying about their imperfections and how you would react, so stop worrying and get on and live your second chance to its full,don't worry about others,let them worry about you.

                                                                                                                      go get em tiger,

                                                                                                              

     

  • Hi Davey

     

    i was up at 4.30am today because BOTH of my stomas(colostomy and urostomy) leaked in the night and it’s horrible, so I understand where you’re coming from. Luckily leaking at night is very rare for me, but stumbling about changing beds is NOT fun!

     

    I tried a number of bags before I settled on ones which suited me, but no system is 100% perfect. I would definitely speak to your stoma nurse for advice-I found mine to be very supportive and full of good advice, plus he/she can give you other bags to try. I tried loads! You don’t need to be suffering from regular leaks..there are bound to be bags which suit you better and will give you more confidence. 

     

    My personal preference is to change both bags daily, which helps. If I leave the colostomy bag on too long it will push off the skin, and although I use a drainable bag I never drain because it doesn’t feel clean to me. There are lots of products to help with sore skin-barrier sprays and wipes, and good old calamine lotion. The trick is to make sure your skin is completely dry before putting on the new bag-I dry it with a hairdryer on low. Your nurse can also give you stoma powder to go on your skin. 

     

    It’s life changing, but saved my life so I try to look at it like that. I have a partner who helps me a lot and isn’t bothered by the bags and I hope you’ll find someone who thinks just the same. We just go to the loo a different way, it doesn’t change who we are inside except in the physical sense. You just need to find someone who understands that. 

     

    I’ve had my stomas for almost 5 months, and while I can’t say I like having them, I do accept them both as I would have died without the surgery I had. They are permanent, can never be reversed, so I just have to come to terms with that..and I believe I have. I wish you all the best and hope things improve for you. x

     

     

  • Thank you for your advice, I really appreciate it. I tend to leave my bags on a couple of days, especially if I'm not getting any discomfort from them. I use the powder frequently as sometimes it bleeds quite badly. I'm currently using like a sticky washer that fits over my stoma and that has helped with the bleeding and the pain. I'm struggling to come to terms with having it, I know I should, but I still find it degrading. I just hope I can find someone who accepts its part of who I am now, but I'm apprehensive about meeting a new partner.