My stoma is on a different page

plh4gail
plh4gail Member Posts: 1,238 Member
edited March 2014 in Colorectal Cancer #1
I have another question. I'm sorry if this one is too personal, gross,or yucky. I'll try to not get quite there. Here goes.......does anyone have or had a temporary loop iliostomy? I have one and it confuses me. I know I should not worry about it, because it's going to be reversed, and soon. But I like things to work the way their supposed to, and I know that's not just the nurse in me. It has 2 openings the one on the tip where it should do it's "work" from. But the other one is at it's base next to my skin, and that's where all the activity goes on. This makes for difficult appliance changes and some skin break down not to mention tons of frustration with them both. The surgeon (who I loved) gave me an explanation when he saw what was happening and said it needed to be reversed. I think I don't believe his explanation and I think something happened (or didn't, as the case may be)in surgery to cause this. But what do I know? It's new to me.....and I was told by nursing staff that I have a beautiful stoma (hahahahaha) really they said that. Only problem is it marches to it's own drumer.

I just like to know what's going on with my body and wonder if anyone else has seen or experienced this?

Having a good day and hope you all do too, Gail

Comments

  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #2
    Hi Gail
    Sorry I can't help with personal experience as I am sporting an end colostomy. but, I thought I'd pop in and say Happy Saturday to you.
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #3
    Lori-S said:

    Hi Gail
    Sorry I can't help with personal experience as I am sporting an end colostomy. but, I thought I'd pop in and say Happy Saturday to you.

    Hi Lori,good morning! It's
    Hi Lori,good morning! It's amazing how wonderful I feel today compared to the other day when I wrote that dark and dreary post. Thank's for the good vibes always. I hope to be able to pass some on today as well. :) Don't you live in California like I do?

    Smiling, Gail
  • khl8
    khl8 Member Posts: 807
    #4
    plh4gail said:

    Hi Lori,good morning! It's
    Hi Lori,good morning! It's amazing how wonderful I feel today compared to the other day when I wrote that dark and dreary post. Thank's for the good vibes always. I hope to be able to pass some on today as well. :) Don't you live in California like I do?

    Smiling, Gail

    Gail,
    My stoma was very
    Gail,
    My stoma was very similar to what you are describing. It was a long 9 months that we shared and for me I am glad it is over. I am post reversal about 14 months now. The advice I can give you at this point since you are so close to a reversal is to just hang in there, make sure that your flange is cut as close to the stoma as possible to prevent the skin breakdown. I have heard that they can re-do the illeostomy for some, but is does not sound as if you would want this or that it is an option. Just hang in there, and anything else you need or want to know, just ask!

    Kathy
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #5
    plh4gail said:

    Hi Lori,good morning! It's
    Hi Lori,good morning! It's amazing how wonderful I feel today compared to the other day when I wrote that dark and dreary post. Thank's for the good vibes always. I hope to be able to pass some on today as well. :) Don't you live in California like I do?

    Smiling, Gail

    I used to
    And at some point I'm coming back. My oldest son is still in the L.A. area. I lived in the L.A. area and then moved to North County SD for a few years (my fav) and now I'm in Las Vegas. But, I'm not really a desert girl (dessert yes, desert no). I really miss the green plants and blue waters of the CA coast. I've had a few unexpected things (business, personal and health) side track me and keep me here longer than I planned.

    I'm glad that you're spirits are lifted. I'm about to go off and do some extreme grocery shopping. Woo Hoo ... Have a great day Gail!
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #6
    Yup
    Mine did the same thing but not at first. After a couple months it started protruding and then poop would come out of both and yes it makes it very hard for the appliance to work properly. This does happen and because you are having a reversal your doctor probably won't do anything with it. I ended up having to get all new appliances because the ones I was using wasn't sticking because the bottom hole was under the adhesive. Mine was also a beautiful stoma and her name was "bella". If you have any other questions, let me know. Oh and one more thing, remember we had colorectal cancer, nothing can phase us now, not even the poopiest situations :)

    Kim
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #7
    Annabelle41415 said:

    Yup
    Mine did the same thing but not at first. After a couple months it started protruding and then poop would come out of both and yes it makes it very hard for the appliance to work properly. This does happen and because you are having a reversal your doctor probably won't do anything with it. I ended up having to get all new appliances because the ones I was using wasn't sticking because the bottom hole was under the adhesive. Mine was also a beautiful stoma and her name was "bella". If you have any other questions, let me know. Oh and one more thing, remember we had colorectal cancer, nothing can phase us now, not even the poopiest situations :)

    Kim

    Rosie
    You guys got me smiling over this. My "other" stoma, or opening seems to be starting its own little protruding stoma also. Twins I seem to have, although not identical.I think Rosie would be a fitting name for mine as she is much like a rosebud, even though she will be going away. She will always be a part of me that I will never forget, and talk about memories.

    Thank's Kim :)
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #8
    khl8 said:

    Gail,
    My stoma was very
    Gail,
    My stoma was very similar to what you are describing. It was a long 9 months that we shared and for me I am glad it is over. I am post reversal about 14 months now. The advice I can give you at this point since you are so close to a reversal is to just hang in there, make sure that your flange is cut as close to the stoma as possible to prevent the skin breakdown. I have heard that they can re-do the illeostomy for some, but is does not sound as if you would want this or that it is an option. Just hang in there, and anything else you need or want to know, just ask!

    Kathy

    Kathy
    Yep, that's what what I'm doing, one day at a time...I was expecting to have "Rosie" for about 9 months too. How was your reversal? How did it go and feel? How long was the hospital stay? Did everything work well after the surgery or did you find problems with things working right?....

    Just wondering what coming, Gail :)
  • Annabelle41415
    Annabelle41415 Member Posts: 6,742 Member
    #9
    plh4gail said:

    Rosie
    You guys got me smiling over this. My "other" stoma, or opening seems to be starting its own little protruding stoma also. Twins I seem to have, although not identical.I think Rosie would be a fitting name for mine as she is much like a rosebud, even though she will be going away. She will always be a part of me that I will never forget, and talk about memories.

    Thank's Kim :)

    Stomas
    Yes, they will always be a part of you even after reversal. I actually took a picture of it the day of the reversal just so that I could put it in my family album that sits on the coffee table.

    Kim
  • Lori-S
    Lori-S Member Posts: 1,277 Member
    #10
    Gail
    I thought that I'd pass this link on to you since you are preparing for your reversal/takedown soon. I know a lot of people from online who swear by it for after reversal and I have it in my arsenal for when my time comes. They call it the MD Anderson Bowel Training Program.

    http://www.lowrectalcancer.com/PDF Files/Bm 3.pdf

    And this one is a good companion read to go with it.

    http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=28
  • khl8
    khl8 Member Posts: 807
    #11
    plh4gail said:

    Kathy
    Yep, that's what what I'm doing, one day at a time...I was expecting to have "Rosie" for about 9 months too. How was your reversal? How did it go and feel? How long was the hospital stay? Did everything work well after the surgery or did you find problems with things working right?....

    Just wondering what coming, Gail :)

    Gail,
    I know that some of
    Gail,
    I know that some of the people here had alot o f problems with the procedure, but I didn't. I was in the hospital for 2 nights, I was supposed to stay until I pooped but my surgeon saw that I was not getting any rest there and said "I know you are not a stupid person" so he let me leave and let me tell you, as soon as I got to the comfort of my own bathroom, i began to go. The surgery itself was nothing compared to the last one, I was sore obviously, I was off work a week and that was mostly for the retraining of the rectum and anus. Be prepared... when you begin to go you will have accidents at first. NEVER trust a fart again! when you first come home, line your underwear with panty liners if you ever want to wear them again. Have lots of bathroom wipes ready.
    The one thing you need to talk to your doc about is Herniation at the stoma site, it is very common and I have to go back into the osptial in december to have the hernia correted and am looking at possibly the sam incision as the resection. My colorectal surgein tols me taht he is now going to be meshing the abdomen of his patients as this is happening more and more.
    So I went back to work in a week after the procedure and I carried an extra set of clothes with me for a while, I never had to use them though. But it is great now. don't get me wrong some days I feel like I am in the bathrooom all day but these days are few and far between, I live a normal life, I work, play, travel all of it without the fear od crapping my pants.

    anytime you need to know anything, just holler!!!
    Kathy
  • theresa8
    theresa8 Member Posts: 61
    #12
    Lori-S said:

    Gail
    I thought that I'd pass this link on to you since you are preparing for your reversal/takedown soon. I know a lot of people from online who swear by it for after reversal and I have it in my arsenal for when my time comes. They call it the MD Anderson Bowel Training Program.

    http://www.lowrectalcancer.com/PDF Files/Bm 3.pdf

    And this one is a good companion read to go with it.

    http://www2.mdanderson.org/app/pe/index.cfm?pageName=opendoc&docid=28

    Husband's stoma was identical to yours
    It was a rough 8 months but with the help of his stoma nurse we found the perfect appliance to deal with the double output. He's been out of his reversal surgery for two months and it was very easy going. His functions are back to a new normal and he doesn't miss his stoma at all. Good luck to you.
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #13
    Thank's for the info
    Thank's for all the input and info. Tomorrow is Monday and Wednesday I head up to the hospital. Surgery is not until Friday, but I have a yucky test to do early Thursday to make sure I'm working down below before the reversal. I'm really not looking forward to this test, I'm getting tired of being messed with, and this one sounds uncomfortable. I sure hope this goes as it's supposed to. Thank you for the site, I just got my kids to bed and can look it up now.

    Oh yes, after the really down and full of the blue's week I had, I had such a nice weekend. Things are looking brighter for this day.

    Smiling, Gail
  • mommyof2kds
    mommyof2kds Member Posts: 519
    #14
    plh4gail said:

    Thank's for the info
    Thank's for all the input and info. Tomorrow is Monday and Wednesday I head up to the hospital. Surgery is not until Friday, but I have a yucky test to do early Thursday to make sure I'm working down below before the reversal. I'm really not looking forward to this test, I'm getting tired of being messed with, and this one sounds uncomfortable. I sure hope this goes as it's supposed to. Thank you for the site, I just got my kids to bed and can look it up now.

    Oh yes, after the really down and full of the blue's week I had, I had such a nice weekend. Things are looking brighter for this day.

    Smiling, Gail

    If you have a diverting loop
    If you have a diverting loop ileostomy, there are supposed tto be 2 holes, those 2 parts of the colon is what gets joined with the ostomy is reversed.. One part of the colon goes to rectum and one goes to the healthy bowel which is where all the feces come from.. Maybe this is not the info you were wanting to know. If not sorry and yeh for reversals... I had mine 14 mths ago. And now if I hear anyone talk negative about poop or smell. etc... I speak up and say, at least you can poop.. that is a great thing to be able to poop. Poop anywhere, who cares about the smell, do it and be proud you can. LOL Take care Petrina
  • khl8
    khl8 Member Posts: 807
    #15
    plh4gail said:

    Thank's for the info
    Thank's for all the input and info. Tomorrow is Monday and Wednesday I head up to the hospital. Surgery is not until Friday, but I have a yucky test to do early Thursday to make sure I'm working down below before the reversal. I'm really not looking forward to this test, I'm getting tired of being messed with, and this one sounds uncomfortable. I sure hope this goes as it's supposed to. Thank you for the site, I just got my kids to bed and can look it up now.

    Oh yes, after the really down and full of the blue's week I had, I had such a nice weekend. Things are looking brighter for this day.

    Smiling, Gail

    Gail,
    the test is not bad at
    Gail,
    the test is not bad at all! Is this the test where they are going to give you a dye enema to make sure all looks good?

    Kathy
  • plh4gail
    plh4gail Member Posts: 1,238 Member
    #16
    mommyof2kds said:

    If you have a diverting loop
    If you have a diverting loop ileostomy, there are supposed tto be 2 holes, those 2 parts of the colon is what gets joined with the ostomy is reversed.. One part of the colon goes to rectum and one goes to the healthy bowel which is where all the feces come from.. Maybe this is not the info you were wanting to know. If not sorry and yeh for reversals... I had mine 14 mths ago. And now if I hear anyone talk negative about poop or smell. etc... I speak up and say, at least you can poop.. that is a great thing to be able to poop. Poop anywhere, who cares about the smell, do it and be proud you can. LOL Take care Petrina

    Petrina and Kathy
    The information you gave was perfect. I was told about what you said Petrina and makes sense. Only I think my stoma must be turned or pulled a little to off side it, because it has to be using the wrong hole. Not the wrong hole, it's just pulled maybe so it drains not the way intended? hmm... But, for me, hopefully it will all be over after this Friday and my abd skin can heal. The gastric contents are soo caustic! It's just very hard for me to keep everything intact and clean when it doesn't come out and go out into the pouch, but oozes from what looks like an insy belly button. I have this nice protruding pink stoma with an opening at the tip with nothing coming out there. Yes, I agree pooping is a good thing :) .....Oh well, I feel like I can only do with what is given me and use the valuable information I receive from you guy's to help get it done. Kathy, I'm relieved to hear what you said about the Barium Enema. It sounds tough, but if you can do it, so can I.

    Smiling, Gail
  • khl8
    khl8 Member Posts: 807
    #17
    plh4gail said:

    Petrina and Kathy
    The information you gave was perfect. I was told about what you said Petrina and makes sense. Only I think my stoma must be turned or pulled a little to off side it, because it has to be using the wrong hole. Not the wrong hole, it's just pulled maybe so it drains not the way intended? hmm... But, for me, hopefully it will all be over after this Friday and my abd skin can heal. The gastric contents are soo caustic! It's just very hard for me to keep everything intact and clean when it doesn't come out and go out into the pouch, but oozes from what looks like an insy belly button. I have this nice protruding pink stoma with an opening at the tip with nothing coming out there. Yes, I agree pooping is a good thing :) .....Oh well, I feel like I can only do with what is given me and use the valuable information I receive from you guy's to help get it done. Kathy, I'm relieved to hear what you said about the Barium Enema. It sounds tough, but if you can do it, so can I.

    Smiling, Gail

    Gail,
    after everything you
    Gail,
    after everything you have been through the Barium test is a piece of cake! I was surprised how easy it was. BUT I had the strangest experience with it. when the test was over they sent me to the bathroom so that I could release the barium, no problem. On my way out of the hospital I had the feeling like more was going to come out, so I ducked into the nearest ladies room and sat down ( this is whre it gets graphic, sorry)so all of a sudden I pooped! and quite a bit! Now where in the hell did that come from. I am in the stall and I yelled "what the hell"! I know the other people in the batroom were thinking I was crazy! So here I am on the toilet grabbing my cell phone and calling the doctor, and do you know that they had the nerve to tell me that it must have been in there the whole time? 9 months? what? no way? That is the only explanation that i got! Oh or that maybe that was some that passed by the ileostomy! what? I don't think so! I still to this day do not know where the poo came from. This story should be in a book called "tales from the toilet"
    But, you will be fine, the test is easy!
    Kathy

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