Feeling depressed need help
you not to check it all the time afraid of it caking up cause it causes leaks
and checking to see if I need to empty it.I had a wound vac cause when the Dr. took the staples out it opened up had the wound vac for almost 5 weeks.Now the wound is 1" deep
still getting home health care till the wound heals cause it is so close to the stoma.
There is one meeting a month here and it is a guy comes in he is a sells rep for conver tex.
I use coloplast and then every one goes around the room and says there names and what they
have and how long they had it Like my name is Terry and I had cancer I now wear a bag for 7 weeks now then they go to the next person after they do that they have refreshments and chat with each other that is suppose to be a support meeting OH the chair person does most of the talking more like a business meeting so I do not have any support Unless I
come here.So sorry about the long dialog sounds negative but this is what is happening in
my life.""
Comments
-
Hi,
I am sorry you are
Hi,
I am sorry you are having trouble adjusting to your colostomy. I had a bag for 18 mos., and then was able to have it reversed, I don't know if that is a possiblility for you? But.. the most important thing that helped me was a good ostomy nurse. She came to my house, and fitted me with a bag and a ring that went on my stoma so the bag would fit very tight. I hardly ever had any problems with it after that. But at first, I couldn't get the bag to stay on very long, it would leak. I always took extra clothes with me wherever I went, and the first thing I did was look for a bathroom, everywhere! But after I was fitted properly, I even went swimming in the ocean with my bag! You will get used to it, it is a little hard at first, but I always asked myself .. what is the alternative?? So I did what I had to do. But I will say I was very happy happy happy to get rid of it. I wish you luck, and if that support group isn't doing it for you, maybe there is a better one, don't get discouraged.
Good Luck,
Gail0 -
Hey Q
I'm so sorry you're having such a hard time adapting to the bag, wow, I never knew they even had support groups for people with colostomies, but I actually am taking to it well, I pretty much accept any challenge I have coming to me, I have a bag and as you know also had a wound vac for about 5 weeks as well, and my scar is maybe less then a 1/4 of an inch, it isn't that deep anymore, the vac really worked well, I don't have any support system, I had a hard time trying to get it right and learning how to do it for the first couple weeks, but my husband also helped me get through this, and even has helped me change it, I don't need him anymore to do it, and don't let him change it for me anymore, but it's just something I keep thinking as part of my daily routine now, just going to the bathroom a different way from some people, but at least I'm going.
Is yours permanent? I can have a reversal in 6 months, but I don't even think I'm going to get one, I may just keep it. I won't swim with it, and try to hide it as to not let people think it's gross or something, if you need to find another support group that may help you, you should go, but try not looking at it as something awful, but something that is just helping you live a normal life, even though it's a new normal, I know it's easier said then done, but this may take more time for you, just focus on a new way to go and maybe even see some humor in it, this is weird but, my stoma is in this ticklish place of my side, so when I feel myself going, it always makes me feel like I'm being tickled there, so I imagine someone doing just that, I try to make light of things when I can, but try to revert my thoughts on something else, then what is being left from my battle
Hugssss!
~Donna0 -
Hi Gail yes my bag isGlv49 said:Hi,
I am sorry you are
Hi,
I am sorry you are having trouble adjusting to your colostomy. I had a bag for 18 mos., and then was able to have it reversed, I don't know if that is a possiblility for you? But.. the most important thing that helped me was a good ostomy nurse. She came to my house, and fitted me with a bag and a ring that went on my stoma so the bag would fit very tight. I hardly ever had any problems with it after that. But at first, I couldn't get the bag to stay on very long, it would leak. I always took extra clothes with me wherever I went, and the first thing I did was look for a bathroom, everywhere! But after I was fitted properly, I even went swimming in the ocean with my bag! You will get used to it, it is a little hard at first, but I always asked myself .. what is the alternative?? So I did what I had to do. But I will say I was very happy happy happy to get rid of it. I wish you luck, and if that support group isn't doing it for you, maybe there is a better one, don't get discouraged.
Good Luck,
Gail
Hi Gail yes my bag is permanent and no there are no other support groups here sad to say.
my bag does not leak it is the flange if I cake up to much.I do have an ostomy nurse and she is helping me with the fit I think I have a good one now but still am look and feeling to see if it is OK.Any one who has an permanent ostomy bag could you please tell me how long it took to not look and feel to see if it needs to be empty I feel dirty did you feel that way?0 -
You know....qwe said:Hi Gail yes my bag is
Hi Gail yes my bag is permanent and no there are no other support groups here sad to say.
my bag does not leak it is the flange if I cake up to much.I do have an ostomy nurse and she is helping me with the fit I think I have a good one now but still am look and feeling to see if it is OK.Any one who has an permanent ostomy bag could you please tell me how long it took to not look and feel to see if it needs to be empty I feel dirty did you feel that way?
... I actually add a little baby oil in my bag and rub the sides around with it, to let the flow be a bit "slippery" so it's not so thickened, have you tried some kind of lubricating inside the flange before you clasp it?0 -
Hey
Sorry to hear you are having a hard time adjusting to it. You have had a struggle from the onset with the stoma not being out far enough, then the opening in the incision, and the wound vac. You have been through a lot in the last 7 weeks and it will take time to adjust. Glad you have a good nurse.
My Ostomy group is great and we meet once a month, but there is always something interesting going on. Next month is the picnic which should be fun.
Hope you can find another group, maybe ask your local hospital, they might have one.
Let me know how you are doing.
Kim0 -
Hi DonnaShayenne said:Hey Q
I'm so sorry you're having such a hard time adapting to the bag, wow, I never knew they even had support groups for people with colostomies, but I actually am taking to it well, I pretty much accept any challenge I have coming to me, I have a bag and as you know also had a wound vac for about 5 weeks as well, and my scar is maybe less then a 1/4 of an inch, it isn't that deep anymore, the vac really worked well, I don't have any support system, I had a hard time trying to get it right and learning how to do it for the first couple weeks, but my husband also helped me get through this, and even has helped me change it, I don't need him anymore to do it, and don't let him change it for me anymore, but it's just something I keep thinking as part of my daily routine now, just going to the bathroom a different way from some people, but at least I'm going.
Is yours permanent? I can have a reversal in 6 months, but I don't even think I'm going to get one, I may just keep it. I won't swim with it, and try to hide it as to not let people think it's gross or something, if you need to find another support group that may help you, you should go, but try not looking at it as something awful, but something that is just helping you live a normal life, even though it's a new normal, I know it's easier said then done, but this may take more time for you, just focus on a new way to go and maybe even see some humor in it, this is weird but, my stoma is in this ticklish place of my side, so when I feel myself going, it always makes me feel like I'm being tickled there, so I imagine someone doing just that, I try to make light of things when I can, but try to revert my thoughts on something else, then what is being left from my battle
Hugssss!
~Donna
Mine is
Hi Donna
Mine is permanent and is in the front I pass gas and it can be loud and I do not know when it will happen till I hear it LOL.Same when I have a blow movement I can not feel it
like you can a stoma does not have any nerves in it and lots of blood vessels so when I
touch it with toilet paper there will be blood on it that is normal for a stoma.0 -
Hi KimAnnabelle41415 said:Hey
Sorry to hear you are having a hard time adjusting to it. You have had a struggle from the onset with the stoma not being out far enough, then the opening in the incision, and the wound vac. You have been through a lot in the last 7 weeks and it will take time to adjust. Glad you have a good nurse.
My Ostomy group is great and we meet once a month, but there is always something interesting going on. Next month is the picnic which should be fun.
Hope you can find another group, maybe ask your local hospital, they might have one.
Let me know how you are doing.
Kim
There are no other
Hi Kim
There are no other support groups here like I said before sad to say.0 -
I put baby oil in the bag myShayenne said:You know....
... I actually add a little baby oil in my bag and rub the sides around with it, to let the flow be a bit "slippery" so it's not so thickened, have you tried some kind of lubricating inside the flange before you clasp it?
I put baby oil in the bag my ostomy nurse said not to get it on the stoma so if I put the oil on the flange and the stool moves down will any of the oil get on the stoma?0 -
qweqwe said:Hi Kim
There are no other
Hi Kim
There are no other support groups here like I said before sad to say.
OK.....First of all I finally figured out why your screen name is "qwe" Man am I feeling a little dumb right now.....anyway here is my feeling about my permanent colostomy...and some of my experiences with it.......
First of all qwe you have to realize that your life has changed and you can't say for the worse because worse means your no longer here....So, with that said you and I both have permanent ostomys....Heres what happen to me the first trip out of my house after surgery I was able to drive short distances without sitting down because my butt hurt so bad...I actually used one of my legs to keep me straightened out and drove with the other. I went into the post office one Saturday morning to mail a package and all of the ladies in the area seem to be there at that specific time, kinda like they were waiting for me to get there...I walked in and it was as usual, quiet as a library and guess what ole Buzzard did when he sat his package on the counter...........YEP !!! I farted.......it was so loud and so long that I simply then and there wanted to die...I simply told all of these women with their mouths hanging wide open that I just had surgery, I had just washed my ostomy, and I couldn't do a thing with it....Then I took my package and walked out...You know its funny, when I went back (after the embarrassment wore off) the Postmaster there (a woman) told me that after I left these women started talking about me farting in there and how awful and rude they said it was when all at once the Postmaster told them that she knew what I was talking about and how I felt. She too had had colon cancer 3 years prior and told the women that it was something just to be alive, much less to have to be embarrassed about something that you have no control over....
Another...The preacher was over eating supper with us one night and I not only did it once but twice...I apologized to him both times and he told me not to worry about it. He told me son, your alive, and it doesn't matter what you do, its how you treat others....I never looked back after he said that. I am fine with it and it doesn't smell so whats the big deal....
I walk around constantly with my hand close to my pouch in case I am at church and praying and it wants to sound off...Its a habit that I can't get rid of, but its one of my comfort zones that allows me to function with it comfortably...I mess with it constantly checking to see if its still snapped in...checking to see if the filter is cleared...I use the Hollister 2 piece with a filter and it is not the reusable type. Mine is a Flex Tend with a closed pouch and it has only come off twice and both times was my fault..They are hard to have come off unknowingly...and also my stoma now doesn't hardly bleed anymore ..I guess it has calloused somewhat...I don't know...It is a part of me and it took a little getting use to and a little on the mental aspect of it also, but you have to remember, it kept you alive and doing most of the things you enjoy. The best support group you can have is yourself.You have to be happy within yourself..You as I and everyone else in here are unique in our own way...We must be proud and not ashamed of what we endure(d) to get what and where we are now...alive and well.....wear it with pride, I do, and never think anything less of yourself because you and I are different. We are all warriors, and thats what makes us unique....Now SMILE !!!!!0 -
My nurse....qwe said:I put baby oil in the bag my
I put baby oil in the bag my ostomy nurse said not to get it on the stoma so if I put the oil on the flange and the stool moves down will any of the oil get on the stoma?
....never mentioned not to get oil on the stoma, just alcohol...she saud alcohol would dry it out, and that was it. The oil just stays on the bag, I have never had problems with oil on my stoma 0 -
I'd keep looking
I don't have any practical help for you, but I'm really sorry you're going through all this. You know, if that support group isn't doing it for you, maybe you can find support somewhere else. Maybe not in a group, but through a friend or a pastor or a really kind nurse or doctor. Sounds like that group isn't trying to be anything but a social gathering.
*hugs*
Gail0 -
UOAA.ORG
They saved my life when I had my ostomy. It is a wonderful group of folks of all ages (including kids and teenagers) with all kinds of ostomies. They have wonderful 'tricks' to make things work for you. I live in a rural area without support groups and the ostomy nurses were helpful at the hospital but not so much after. They knew nothing about the different systems or how they worked. I got the best info from the above support group and the ostomy nurses at the supply companies. Please join their message boards and just start reading. There is so much wonderful information there that you could read for days!
Kimby0 -
Cancer group
I also felt a lot of strain with a cancer support group. Most members had breast cancer and were in recovery. They were all happy and upbeat. Their surgeries were quite painful, but even the group leader acknowledged that gut surgery was probably even worse. I stayed six months and in that time the 2 other members with colorectal cancer both died. I needed to talk about fear, and depression, and how to cope with seriously debilitating chemo side effects. Most people were very uncomfortable with my bringing up "dark" topics, but that is what I needed. I totally understand how scary and nasty it is to wear a bag of excrement on your belly. I still kind of hate it, but it becomes manageable after about 7 months. I tried about 8 different bags, but my belly fat made my colostomy have a 1/2 inch indent, so nothing really worked except the Esteem Convatec. I like it best because it peels back and can be reseaaled, and there is no clip. I have found that I can reseal it about 15 times before it gets leaky. I like just being able to dump a lump into the toilet rather than try to squeeze it through a small opening that I can't see well. You've gone through an awful lot, so be brave and ask whatever questions you need to ask. Hopefully, all of us will be stronger by sticking together.0 -
This sounds really scary, but...qwe said:Hi Donna
Mine is
Hi Donna
Mine is permanent and is in the front I pass gas and it can be loud and I do not know when it will happen till I hear it LOL.Same when I have a blow movement I can not feel it
like you can a stoma does not have any nerves in it and lots of blood vessels so when I
touch it with toilet paper there will be blood on it that is normal for a stoma.
I have no bag yet, but am in the process of getting fixed. Each day and each appt. with the surgeon or therapist points toward a permanent bag more and more. Difficulties in diagnosis of where my problem is exactly, but the options for repair continue to diminish. One and a half years after surgery followed by radiation and chemo and I still can't eat... I sit on the toilet for hours and hours. Just last Thursday 13 hours on the toilet...my rectum fights against the rest of my innards constantly trying to keep my excrement in my body...I am sick and tired of my toilet room; computer, cable tv, table to rest my head, $500 toilet seat, bookrack and all that it is...I WANT A BAG NOW...but you guys are scaring me.
qwe, I really hate to hear of the problems you are having, and I can't offer much support other than a little humor. I have not looked for a group, but I may. I keep hearing good things until I signed up tonight when I found this site. I have been very careful of what, if anything, I search for online. One of my docs tells me I am lucky that when things get bad I am able to step back and realize the truth. Anyway, I try to find humor in my life, but it does get tough at times and I wish you all the luck in getting thru this. If you need humor I will be glad to relate to you my experiences in the funniest way I can think of. Outside of the relationship I have formed with my toilet seat I don't know much else, but I will try. Good luck.0 -
colostomy bag
HI, I have a permanant colostomy bag,my surgery was july of 08,and I finally got used to it around the first of the year,jan.09.The only times that I had a leak was when I wasn't paying attention and caught the edge of the bag in my zipper,and put a hole in it.I use coloplast and don't have any problems,you should use what ever you feel confortable with,I do pull slightly on the little tab on the bag when I clean it or change it to make sure it is on good.It sounds like you don't have much support there,I had support from some of my neighbors,who had relatives with cancer,and from some of my family.I had a brother die of cancer a month before mine was found.If all else fails you can find some support ,and advise here.You will find they are a good groupe of people.I wish you the best of luck0 -
Hi jamiedonweeksjamiedonweeks said:This sounds really scary, but...
I have no bag yet, but am in the process of getting fixed. Each day and each appt. with the surgeon or therapist points toward a permanent bag more and more. Difficulties in diagnosis of where my problem is exactly, but the options for repair continue to diminish. One and a half years after surgery followed by radiation and chemo and I still can't eat... I sit on the toilet for hours and hours. Just last Thursday 13 hours on the toilet...my rectum fights against the rest of my innards constantly trying to keep my excrement in my body...I am sick and tired of my toilet room; computer, cable tv, table to rest my head, $500 toilet seat, bookrack and all that it is...I WANT A BAG NOW...but you guys are scaring me.
qwe, I really hate to hear of the problems you are having, and I can't offer much support other than a little humor. I have not looked for a group, but I may. I keep hearing good things until I signed up tonight when I found this site. I have been very careful of what, if anything, I search for online. One of my docs tells me I am lucky that when things get bad I am able to step back and realize the truth. Anyway, I try to find humor in my life, but it does get tough at times and I wish you all the luck in getting thru this. If you need humor I will be glad to relate to you my experiences in the funniest way I can think of. Outside of the relationship I have formed with my toilet seat I don't know much else, but I will try. Good luck.
I am so
Hi jamiedonweeks
I am so sorry I scared you I had cancer in the lower rectum and I was also losing
control of my stool movements and had the radiations and chemo the radiation treatment
broke down all the muscles in my rectum so I some times could not make it to the bath room I also felt like I was always in the bathroom really have the bag is the best thing I could have done it just takes time getting used to it.Every one is different maybe
you will be able to cope with it better I have no support and that is why it is hard for me.0 -
Buzzard thank you for theBuzzard said:qwe
OK.....First of all I finally figured out why your screen name is "qwe" Man am I feeling a little dumb right now.....anyway here is my feeling about my permanent colostomy...and some of my experiences with it.......
First of all qwe you have to realize that your life has changed and you can't say for the worse because worse means your no longer here....So, with that said you and I both have permanent ostomys....Heres what happen to me the first trip out of my house after surgery I was able to drive short distances without sitting down because my butt hurt so bad...I actually used one of my legs to keep me straightened out and drove with the other. I went into the post office one Saturday morning to mail a package and all of the ladies in the area seem to be there at that specific time, kinda like they were waiting for me to get there...I walked in and it was as usual, quiet as a library and guess what ole Buzzard did when he sat his package on the counter...........YEP !!! I farted.......it was so loud and so long that I simply then and there wanted to die...I simply told all of these women with their mouths hanging wide open that I just had surgery, I had just washed my ostomy, and I couldn't do a thing with it....Then I took my package and walked out...You know its funny, when I went back (after the embarrassment wore off) the Postmaster there (a woman) told me that after I left these women started talking about me farting in there and how awful and rude they said it was when all at once the Postmaster told them that she knew what I was talking about and how I felt. She too had had colon cancer 3 years prior and told the women that it was something just to be alive, much less to have to be embarrassed about something that you have no control over....
Another...The preacher was over eating supper with us one night and I not only did it once but twice...I apologized to him both times and he told me not to worry about it. He told me son, your alive, and it doesn't matter what you do, its how you treat others....I never looked back after he said that. I am fine with it and it doesn't smell so whats the big deal....
I walk around constantly with my hand close to my pouch in case I am at church and praying and it wants to sound off...Its a habit that I can't get rid of, but its one of my comfort zones that allows me to function with it comfortably...I mess with it constantly checking to see if its still snapped in...checking to see if the filter is cleared...I use the Hollister 2 piece with a filter and it is not the reusable type. Mine is a Flex Tend with a closed pouch and it has only come off twice and both times was my fault..They are hard to have come off unknowingly...and also my stoma now doesn't hardly bleed anymore ..I guess it has calloused somewhat...I don't know...It is a part of me and it took a little getting use to and a little on the mental aspect of it also, but you have to remember, it kept you alive and doing most of the things you enjoy. The best support group you can have is yourself.You have to be happy within yourself..You as I and everyone else in here are unique in our own way...We must be proud and not ashamed of what we endure(d) to get what and where we are now...alive and well.....wear it with pride, I do, and never think anything less of yourself because you and I are different. We are all warriors, and thats what makes us unique....Now SMILE !!!!!
Buzzard thank you for the laugh I laugh so hard that post
office thing was so funny I know not for you but when you
look back on it I bet you laugh.0 -
Think you Kimby I will gokimby said:UOAA.ORG
They saved my life when I had my ostomy. It is a wonderful group of folks of all ages (including kids and teenagers) with all kinds of ostomies. They have wonderful 'tricks' to make things work for you. I live in a rural area without support groups and the ostomy nurses were helpful at the hospital but not so much after. They knew nothing about the different systems or how they worked. I got the best info from the above support group and the ostomy nurses at the supply companies. Please join their message boards and just start reading. There is so much wonderful information there that you could read for days!
Kimby
Think you Kimby I will go there now.0 -
I thank you all for yourkarguy said:colostomy bag
HI, I have a permanant colostomy bag,my surgery was july of 08,and I finally got used to it around the first of the year,jan.09.The only times that I had a leak was when I wasn't paying attention and caught the edge of the bag in my zipper,and put a hole in it.I use coloplast and don't have any problems,you should use what ever you feel confortable with,I do pull slightly on the little tab on the bag when I clean it or change it to make sure it is on good.It sounds like you don't have much support there,I had support from some of my neighbors,who had relatives with cancer,and from some of my family.I had a brother die of cancer a month before mine was found.If all else fails you can find some support ,and advise here.You will find they are a good groupe of people.I wish you the best of luck
I thank you all for your support I am feeling a little better.0
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