Question not for the faint of heart- colostomy

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Ok, I have searched high and low and I can't seem to find anywhere the answer to my questions

A) Does it bother anyone else when poop stays stuck to the top of your bag instead of going down into the bag? When I have this problem I push the poop down

B) Does anyone else have days where they don't feel clean enough, like somedays (not very often) but some days I feel the need to change my bag like 20 times!

C) Does anyone else constantly mess with their bag when they have idle hands? 

 

I don't know if any of this is nirmal behavior or some sort of neurosis I need to look into, I've had my bag 1 1/2 years and I'm not 100% how Im coping

Comments

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    Hello, and welcome to the forum

    I personally don't have a colostomy, but there are many here that do, and I know they will be along to answer your questions. 

    Don't worry about asking squeemish questions, we're all on the same journey, where poop, pooping one way or another is all a part of our life. 

    Look forward to getting to know you here. 

    Sue - Trubrit

  • jen2012
    jen2012 Member Posts: 1,607 Member
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    My husband has an ileostomy

    My husband has an ileostomy and yes to a and c!  He says when the "meatballs" form on top, if he doesnt push them down it will cause an issue.   he never mentioned b, but probably because he doesn't like changing it!

    welcome...glad you came out of lurking.  hope you are done with treatment and doing well.

  • Faerytale1982
    Faerytale1982 Member Posts: 3
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    jen2012 said:

    My husband has an ileostomy

    My husband has an ileostomy and yes to a and c!  He says when the "meatballs" form on top, if he doesnt push them down it will cause an issue.   he never mentioned b, but probably because he doesn't like changing it!

    welcome...glad you came out of lurking.  hope you are done with treatment and doing well.

    Thank you!

    Thank you both! Yes, I'm doing well, Im 19 months cancer free! I could cry you two have made me so happy! I'm glad to know that I have somewhere to go to talk to people about the issues I can't really talk to with anyone else. Jen, as long as I'm not the only person who deals with a and c, I'm good! Thank you!

  • lp1964
    lp1964 Member Posts: 1,239 Member
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    Dear Friend,

    I have had the colostomy for the same time as you and went through quiet an evolution until I got completely comfortable with it.first I had the same issue like you. What helped me with that is adhesive spray that gave me a much better seal and adding water before I emptied my bag and repeat it two more time until it's completly clean. I also wer my bag sideways held by my tucked in dress shirt, this way it doesn't interfere with my belt line. 

    The real improvement came when I started to empty my bowels with milk of magnesia then I was output free for 4 days and only wearing a 3" stoma cap. This is real freedom and comfort. I feel much more confident. You are younger than most colostomy ptients so you should look into this.

    You can email me for more info, because this is not an issue for most of the members here.

    You can also find tons of info at the UOAA website.

    Hope this helps,

    Laz

  • Faerytale1982
    Faerytale1982 Member Posts: 3
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    lp1964 said:

    Dear Friend,

    I have had the colostomy for the same time as you and went through quiet an evolution until I got completely comfortable with it.first I had the same issue like you. What helped me with that is adhesive spray that gave me a much better seal and adding water before I emptied my bag and repeat it two more time until it's completly clean. I also wer my bag sideways held by my tucked in dress shirt, this way it doesn't interfere with my belt line. 

    The real improvement came when I started to empty my bowels with milk of magnesia then I was output free for 4 days and only wearing a 3" stoma cap. This is real freedom and comfort. I feel much more confident. You are younger than most colostomy ptients so you should look into this.

    You can email me for more info, because this is not an issue for most of the members here.

    You can also find tons of info at the UOAA website.

    Hope this helps,

    Laz

    Thank you

    The thought of trying it sideways has never even crossed my mind! I may have to try that when I wear jeans. I wear scrubs M-f so it's usually not too bad of an issue. I also wear maternity covers, they add and extra layer of security and it just looks like another shirt under my shirt.

  • Luv2lunch
    Luv2lunch Member Posts: 270
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    Hi

    Hi,

    As far as the "poop" staying up top, what helps my Mom is rubbing a little baby oil on the inside of the bag, near the top. It tends to slide down from there. That tidbit was given to us when we first came on the board by our dear friend Clift (Buzz). He is no longer with us but he really helped a lot of us.

    Hope this helps. Take care.

    Linda and Mom

  • Dyanclark
    Dyanclark Member Posts: 296
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    The Bag

    This sounds just like my husband.  He actually dumps his bag at least 12 times a day.  Just one drop on his skin is painful &  it burns his skin.  It probably has to do with how they have to create the stoma.  We had a neighbor who only had to empty twice a day.

    Hugs George & Diane

     

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    Dyanclark said:

    The Bag

    This sounds just like my husband.  He actually dumps his bag at least 12 times a day.  Just one drop on his skin is painful &  it burns his skin.  It probably has to do with how they have to create the stoma.  We had a neighbor who only had to empty twice a day.

    Hugs George & Diane

     

    Two things.  I had this

    Two things.  I had this problem and had to get a new wafer.  If he uses the one with a tape, it could be the tape, I was allergic.  I now use one without and no burning anymore.  Also there is a powder that you put on to avoid the burning that works great!  Once you use it, the burning is very rare.  It's calld Stomahesive Protective Powder. You put it on and then you use "No Sting Barrier Film", the combo of the two will take away the sting.  You blow on the area to get it to dry before putting the wafer back on.  For a day or two the wafer will feel a little tight so I make the hole a little loose with my finger to give it some relief.

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    Thank you

    The thought of trying it sideways has never even crossed my mind! I may have to try that when I wear jeans. I wear scrubs M-f so it's usually not too bad of an issue. I also wear maternity covers, they add and extra layer of security and it just looks like another shirt under my shirt.

    Do you use an all week bag or

    Do you use an all week bag or a disposable two piece? I'm going to try mine sideways tomorrow out of curiosity.  I use a two piece system.  It is very freeing. 

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    All normal behavior.  There

    All normal behavior.  There is a perfumed gel that you can put in the bag to make it slide down.  I've never used it but I do own it.  I should try it.  I got it as a free sample.  Any of the providers will send you free samples of pretty much anything.

    I played around with wafers and bags until I found one that worked best.  Sometimes it sits at the top if it's too loose, I spend a lot of time in the bathroom on those days or you will have leaks.

    Sometimes it not only smells but it feels "funny".  Mostly when I eat too much fiber and it's loose so it gets trapped at the top.  I hate those days.  You just feel as you said "dirty".  I usually don't change the bags over and over, instead I shower without the wafer and then put on a fresh one and that takes care of it.  My insurance gives me unlimited wafers.  Changing the bags just isn't enough on those days.  

    (This refers to the two piece system which I love)  I've also found that if you shower without the bag and then order "caps", they are great as a "mini towel" before you put the bag back on and good to avoid that wet smell.  It's a bit wasteful because I put it on for only 10 minutes but it helps me keep my sanity, lets me shower without the bag.lets me walk around for 10 minutes while I get ready to get dressed and prevents a mess and smell after shower because by the time I put the new bag on, the area is dry.

    And yes, OCD totally kicks in on same days and I play with the bag all day.  Not as much as I did in the beginning but all day on days when I eat too much fiber.  When it's stuck at the top, there is a constant need to push it down.  If you don't, it'll leak through the wafer.  I also like the crinkle sound.   

  • Trubrit
    Trubrit Member Posts: 5,800 Member
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    A good thread

    My dear friend in England is hoping to have his tumour excised soon (CT scan this week, to see if its shrunk enough), and the Doctors say he will have a bag.  

    I will save this thread and share it with him when he needs it. 

    Thank you for all who have posted. 

    Sue - Trubrit

  • harleywiz
    harleywiz Member Posts: 50 Member
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    I love my bag

    yep i always push it down there is a lub you can put in itso it dont stick so much and yes my wife yells at me all the time beuse im shapeing in to blocks or squezzing the bag even hat it pop twice in my hands not fun its a new toy on 2nd round of of chemo and now have very lose stools and dont have to run to the bathroom i lovemy bag and thejokes are great one of my best is i wake up in the morning and take a good poop then i get out of bedand get somthingto eat.....smile cancer can be fun if you dont let it get to you (im stage four 17% 5 year survial rate they tell me im going on 2 1/2 years and 2nd round of chemo and i still fell like ill live forever.

  • Helen321
    Helen321 Member Posts: 1,459 Member
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    harleywiz said:

    I love my bag

    yep i always push it down there is a lub you can put in itso it dont stick so much and yes my wife yells at me all the time beuse im shapeing in to blocks or squezzing the bag even hat it pop twice in my hands not fun its a new toy on 2nd round of of chemo and now have very lose stools and dont have to run to the bathroom i lovemy bag and thejokes are great one of my best is i wake up in the morning and take a good poop then i get out of bedand get somthingto eat.....smile cancer can be fun if you dont let it get to you (im stage four 17% 5 year survial rate they tell me im going on 2 1/2 years and 2nd round of chemo and i still fell like ill live forever.

    Someone has to be the 17%!

    Someone has to be the 17%!  Keep on smiling.  Funny about the blocks.  lol  I think we all do that.  It's gross when you think about it too much.

  • traci43
    traci43 Member Posts: 773 Member
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    harleywiz said:

    I love my bag

    yep i always push it down there is a lub you can put in itso it dont stick so much and yes my wife yells at me all the time beuse im shapeing in to blocks or squezzing the bag even hat it pop twice in my hands not fun its a new toy on 2nd round of of chemo and now have very lose stools and dont have to run to the bathroom i lovemy bag and thejokes are great one of my best is i wake up in the morning and take a good poop then i get out of bedand get somthingto eat.....smile cancer can be fun if you dont let it get to you (im stage four 17% 5 year survial rate they tell me im going on 2 1/2 years and 2nd round of chemo and i still fell like ill live forever.

    17% is an old number!

    I heard that 8 years ago when I was first diagnosed and I'm still around.  There have been so many new drugs that it's outdated.  In fact, Avastin had just been approved when I was diagnosed.

    Don't let the number get to you!  Traci

  • traci43
    traci43 Member Posts: 773 Member
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    OMG - I'm with you on a & c, sometimes b

    Like Helen, I use a two-piece system.  I have a permanent colostomy for almost a year now.  My poop is pretty well formed and frequently gets stuck at the top and I have to push it down.  If I don't it goes under the wafer and I spring a leak.  I've tried the lubricating deodorant but that doesn't really help.  I don't feel clean if I've had the wafer on for too many days-my insurance pays for only 2 per week and two bags per day.  I go ahead and change the wafer and that really helps.  Someone mentioned the itchiness and I've had it on occassion.  On days I work at home, I try to shower after my morning movement.  That way I can take off the wafer and work at the computer with no bag or wafer for a couple of hours.  I usually use on of the Fresh wipes (like baby wipes) and lay it over the stoma so it stays clean.  And, yes, I too, play with the bag.  Nice to hear I'm not alone. Traci

  • harleywiz
    harleywiz Member Posts: 50 Member
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    traci43 said:

    17% is an old number!

    I heard that 8 years ago when I was first diagnosed and I'm still around.  There have been so many new drugs that it's outdated.  In fact, Avastin had just been approved when I was diagnosed.

    Don't let the number get to you!  Traci

    17%

    ya i told the doc day one i was a Survivor, I love my canvcer i take it every where i go.