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Posted 8/22/2015 7:45 PM (GMT 0)
Hello all,

I am here concerning someone I care about. He had a permanent colostomy (that he had a part of his colon removed because of colon cancer), and he is using colostomy bags. I just need to know how life is with a colostomy bag? Obviously, I cannot ask him as this might be embarrassing to him, but I keep telling him he has to live his life and go out to trips and vacations and be more open to opportunities and relations, because he doesn't do that, instead he stays at home or works in the garden most of the time, beside going to the Church and to some formal occasions. I don't want to be pushing him or pressuring him by asking him to do these things while he cannot do them because of the colostomy bags (e.g.: possible leaks, uncontrollable gases, ... etc), but I feel he is not living his life and that is making me sad, because I want him to be happy and feel normal. So, I appreciate if you help me identifying if his relative isolation might be due to his colostomy.

Thanks
Posted 8/22/2015 9:23 PM (GMT 0)
I don't think it's restricting but i have an ileostomy so I don't exactly know what it's like to have a colostomy. I think with a colostomy, things are more formed so the sotma is much less active, which might be a good thing, but I do not know. I am surprised he doesn't have the option to reattach.

I have a lot of gas, and it is a pain, but you can manage gas by releasing it in the bathroom, just as you would if you had gas and a colon. Leaks haven't been much of an issue for me. I think the hardest part is the mental aspect. Feeling insecure and worrying that you're "different" and people will know. A part of me just doesn't care anymore and then a part of me just wants to be normal. It's really hard to get over the fact that you're no longer functioning the way you always did.
Posted 8/22/2015 11:45 PM (GMT 0)

notsosicklygirl said...
I don't think it's restricting but i have an ileostomy so I don't exactly know what it's like to have a colostomy. I think with a colostomy, things are more formed so the sotma is much less active, which might be a good thing, but I do not know. I am surprised he doesn't have the option to reattach.

I have a lot of gas, and it is a pain, but you can manage gas by releasing it in the bathroom, just as you would if you had gas and a colon. Leaks haven't been much of an issue for me. I think the hardest part is the mental aspect. Feeling insecure and worrying that you're "different" and people will know. A part of me just doesn't care anymore and then a part of me just wants to be normal. It's really hard to get over the fact that you're no longer functioning the way you always did.

Thanks for the reply. He did it more than 20 years ago. I am not sure if things would be different if he had it done these days, but I saw many people with permanent stomas recently for different reasons, young and old, on the Internet. So, when he mentions that these days people don't have to have permanent colostomy, I always tell him that you are not alone in this, in the hope of making him feel better. I think he has adapted to it by now, but I always has this feeling that he feels himself different and not normal.

For the reattach thing, is it possible to be done now or it is too late even if it was possible at the time of surgery, hypothetically speaking?

Thanks
Posted 8/23/2015 2:17 AM (GMT 0)
They'd have to check out his current internal anatomy before making that call. But even if things look okay, the result could still backfire. I had my previous ileostomy for fifteen years before attempting a reversal. Everything looked fine on the anatomical front, but functionality was not. I was miserable for three months before going back on the bag.

From what I understand, colostomies require a bit more maintenance, depending on how low the stoma has been placed. Some people have to actually flush them if they're really low since blockages are a real issue. Others, not so much. It's different from person to person. My suggestion would be to direct him either here or casually suggest some other form of support system. That feeling of displacement and outsider-ness hits all of us, even the well-adjusted ones. I used to wake up in the middle of the night and think how abnormal it was to have a piece of my intestine poking outside of my body; it would make me cry. It's possible he needs a change in perspective and some encouragement from the ostomy community. And while you mean well, you still have no idea what it's like to live as he does. That's probably in the back of his mind even if he never says so. It can be a difficult thing for a functioning person to wrap their heads around.

Also, if he's happy doing what he's been doing, then I say leave it alone. Your perception of normal and living one's life isn't his and that's okay. Unless he's actually demonstrating signs of depression and self-imposed isolation, I would let it go.
Posted 8/23/2015 3:18 AM (GMT 0)

Sammy79 said...
They'd have to check out his current internal anatomy before making that call. But even if things look okay, the result could still backfire. I had my previous ileostomy for fifteen years before attempting a reversal. Everything looked fine on the anatomical front, but functionality was not. I was miserable for three months before going back on the bag.

From what I understand, colostomies require a bit more maintenance, depending on how low the stoma has been placed. Some people have to actually flush them if they're really low since blockages are a real issue. Others, not so much. It's different from person to person. My suggestion would be to direct him either here or casually suggest some other form of support system. That feeling of displacement and outsider-ness hits all of us, even the well-adjusted ones. I used to wake up in the middle of the night and think how abnormal it was to have a piece of my intestine poking outside of my body; it would make me cry. It's possible he needs a change in perspective and some encouragement from the ostomy community. And while you mean well, you still have no idea what it's like to live as he does. That's probably in the back of his mind even if he never says so. It can be a difficult thing for a functioning person to wrap their heads around.

Also, if he's happy doing what he's been doing, then I say leave it alone. Your perception of normal and living one's life isn't his and that's okay. Unless he's actually demonstrating signs of depression and self-imposed isolation, I would let it go.

Thanks for the input, and I am sorry to hear your story. I don't know how life is with a stoma, but I could imagine. That is why you just made me cry, as I usually do when I remember his condition

He doesn't show signs of depression, but he sometimes make remarks that make me feel sad. As the other day, there was a trip, and he said I would like to go, but I am afraid there wouldn't be bathrooms, even though he traveled several times for hours without the need to go to bathrooms. I just want to feel that he is happy (on his terms of course), however, such remarks make me wonder if his condition is preventing him from living his life and to be fully happy.

I wish he could use the Internet to express his feelings and share his experience with people with similar conditions and to hear their stories and how they cope.

Post Edited (DavidOstomyQ) : 8/22/2015 9:26:22 PM (GMT-6)

Posted 8/23/2015 3:33 PM (GMT 0)
I'm young and have a permanent ileostomy. I don't find it limits my life at all; the opposite, for me. My quality of life improved so much thanks to my stoma. I imagine it's much harder for those for whom it is the other way round, if the man you care for had a normal bowel before the cancer, he may see it very differently.

I feel that a well-functioning stoma causes no problems. I don't need to worry about where bathrooms are or about embarrassment in public. However, issues can arise, e.g. a stoma may change size, prolapse or retract, resulting in bags fitting poorly and frequent leaks. If something like that happens, it's difficult to go about daily life normally but problems like these can usually be resolved with the help of a good stoma nurse, or possibly surgeon as corrective surgery can be needed. If he is having frequent leaks he could see someone about them. Or for problems like gas, things like diet changes can help, or again consult a nurse.

If it's psychological though, and he fears embarrassment far more than is warranted, it's harder to adress. Hearing from others who live with stomas could help.

Could there be other reasons he stays home? Some people do just like quiet lives. How did he live before the stoma?
Posted 8/23/2015 3:40 PM (GMT 0)

Sammy said...
That feeling of displacement and outsider-ness hits all of us, even the well-adjusted ones. I used to wake up in the middle of the night and think how abnormal it was to have a piece of my intestine poking outside of my body; it would make me cry.

I've never felt that way. Though that's probably because I have far more abnormal awful things going on. But I always think it's quite cool being able to see my intestine on the outside.
Posted 8/23/2015 5:10 PM (GMT 0)
I guess how one sees himself/herself has a lot to do with how he/she behaves in life. The intention of my original post is to know if the physical condition by itself is hindering for someone with colostomy to be normal in life: doing sports, taking trips, having friends, taking long flights (>12 hours), ... etc.
Posted 8/23/2015 5:20 PM (GMT 0)

DavidOstomyQ said...
I guess how one sees himself/herself has a lot to do with how he/she behaves in life. The intention of my original post is to know if the physical condition by itself is hindering for someone with colostomy to be normal in life: doing sports, taking trips, having friends, taking long flights (>12 hours), ... etc.

In that case, no, the physical condition isn't hindering (unless there is a problem with the stoma or the supplies being used).
Posted 8/23/2015 5:24 PM (GMT 0)

AnnaIvy said...
I'm young and have a permanent ileostomy. I don't find it limits my life at all; the opposite, for me. My quality of life improved so much thanks to my stoma. I imagine it's much harder for those for whom it is the other way round, if the man you care for had a normal bowel before the cancer, he may see it very differently.

I feel that a well-functioning stoma causes no problems. I don't need to worry about where bathrooms are or about embarrassment in public. However, issues can arise, e.g. a stoma may change size, prolapse or retract, resulting in bags fitting poorly and frequent leaks. If something like that happens, it's difficult to go about daily life normally but problems like these can usually be resolved with the help of a good stoma nurse, or possibly surgeon as corrective surgery can be needed. If he is having frequent leaks he could see someone about them. Or for problems like gas, things like diet changes can help, or again consult a nurse.

If it's psychological though, and he fears embarrassment far more than is warranted, it's harder to adress. Hearing from others who live with stomas could help.

Could there be other reasons he stays home? Some people do just like quiet lives. How did he live before the stoma?

Thanks for your comment. I think he was more outgoing in the past, even after the surgery. I am not sure if things change physically with time regarding the stoma to change his attitude. But it is a possibility that other things might change his attitude as well.
Posted 8/23/2015 5:29 PM (GMT 0)

AnnaIvy said...

DavidOstomyQ said...
I guess how one sees himself/herself has a lot to do with how he/she behaves in life. The intention of my original post is to know if the physical condition by itself is hindering for someone with colostomy to be normal in life: doing sports, taking trips, having friends, taking long flights (>12 hours), ... etc.

In that case, no, the physical condition isn't hindering (unless there is a problem with the stoma or the supplies being used).

Thank for the affirmation. If things would be fine with the proper supplies, I think he should have known that by now. I hope he is doing what he does by choice.
Posted 8/23/2015 7:32 PM (GMT 0)
I have to be honest. I don't like people who don't have it asking me about it. I just don't see what they expect to hear? Maybe he isn't comfortable talking about it. It's the kind of thing you might talk about if you're really comfortable with a person, but i definitely don't want to talk about it with people I see once a week. I've always been a "home body", I feel like I've been doing a bit more since being more physically capable, but not because I want to, usually because people are pressuring me. I don't stay home because I can't go out, I prefer to watch a movie at home over going to the movies. I'd rather BBQ than eat out. I like to do things around the home and i am pretty independent, not overly interested in relationships... What do you think he's missing out on? Are you friends like you're over there every day? If not, maybe he has a very fulfilled life and you're not aware of it?
Posted 8/23/2015 7:33 PM (GMT 0)
Mind, those moments of despair happened to me more in my twenties than my thirties. As I got older I began to shrug it off, as I, too, had a lot of other weird things happening to me.

David: The worry about bathrooms being nearby is a real concern I have sometimes. Or I did have. It's hard to say how I feel now. I think I'm a lot less stressed about it. I mean, I ate without concern at a recent festival in my town and before I used to be very cautious about that. I knew where the portapotties were and that was enough. It's possible your friend has become so set in that way of thinking it can be difficult to wrench himself from it.
Posted 8/23/2015 8:37 PM (GMT 0)

notsosicklygirl said...
I have to be honest. I don't like people who don't have it asking me about it. I just don't see what they expect to hear? Maybe he isn't comfortable talking about it. It's the kind of thing you might talk about if you're really comfortable with a person, but i definitely don't want to talk about it with people I see once a week. I've always been a "home body", I feel like I've been doing a bit more since being more physically capable, but not because I want to, usually because people are pressuring me. I don't stay home because I can't go out, I prefer to watch a movie at home over going to the movies. I'd rather BBQ than eat out. I like to do things around the home and i am pretty independent, not overly interested in relationships... What do you think he's missing out on? Are you friends like you're over there every day? If not, maybe he has a very fulfilled life and you're not aware of it?

Well, he is my father, and I am trying to understand him better. It is not that he is not happy. On the contrary, he shows high spirit and he is self-motivated all the time. I just wanted to know that he could do anything if he chooses so. That is all.
Posted 8/23/2015 8:41 PM (GMT 0)

Sammy79 said...
Mind, those moments of despair happened to me more in my twenties than my thirties. As I got older I began to shrug it off, as I, too, had a lot of other weird things happening to me.

David: The worry about bathrooms being nearby is a real concern I have sometimes. Or I did have. It's hard to say how I feel now. I think I'm a lot less stressed about it. I mean, I ate without concern at a recent festival in my town and before I used to be very cautious about that. I knew where the portapotties were and that was enough. It's possible your friend has become so set in that way of thinking it can be difficult to wrench himself from it.

I am just wondering if this is the case. I don't know.
Posted 8/24/2015 1:15 AM (GMT 0)

DavidOstomyQ said...

notsosicklygirl said...
I have to be honest. I don't like people who don't have it asking me about it. I just don't see what they expect to hear? Maybe he isn't comfortable talking about it. It's the kind of thing you might talk about if you're really comfortable with a person, but i definitely don't want to talk about it with people I see once a week. I've always been a "home body", I feel like I've been doing a bit more since being more physically capable, but not because I want to, usually because people are pressuring me. I don't stay home because I can't go out, I prefer to watch a movie at home over going to the movies. I'd rather BBQ than eat out. I like to do things around the home and i am pretty independent, not overly interested in relationships... What do you think he's missing out on? Are you friends like you're over there every day? If not, maybe he has a very fulfilled life and you're not aware of it?

Well, he is my father, and I am trying to understand him better. It is not that he is not happy. On the contrary, he shows high spirit and he is self-motivated all the time. I just wanted to know that he could do anything if he chooses so. That is all.

Okay, that sheds some light. I definitely understand why you're concerned now :) It's very sweet of you to come here trying to find answers. I hope he will consider joining a group of some kind so he can see that he is normal and that he's not alone. It's really a hard topic to discuss, especially with people who aren't in the same situation. I do not talk with my family about it, none of them are very understanding. he is lucky to have a child who is so invested in his well-being. I wonder if he can be reconnected at this point, I don't think it's the amount of time but possibly that his is permanent. It really depends on what parts he has and what he's lost. If he has a rectum and anus , i would think it's possible, but at the same time, if it were, I am sure he would have considered it by now if he wanted to.
Posted 8/24/2015 10:03 AM (GMT 0)
This is probably something he already does, but I'll mention it anyway: whenever I'm going to be out for a while, I bring a stoma bag, wet wipes and change of clothes with me, just in case. I've never had to use it, but it's reassurance that I can clean up should I get an unexpected leak.

Also, why not just ask him how he feels and whether he doesn't want to do much because of the stoma? You're the one in the best position to decide if this is a good idea or not, but I wouldn't rule it out just because it's a personal subject. It could make things a lot more simple, if the stoma has kind of become the elephant in the room, it may help to just acklowledge it.
Posted 8/24/2015 7:51 PM (GMT 0)

notsosicklygirl said...

DavidOstomyQ said...

notsosicklygirl said...
I have to be honest. I don't like people who don't have it asking me about it. I just don't see what they expect to hear? Maybe he isn't comfortable talking about it. It's the kind of thing you might talk about if you're really comfortable with a person, but i definitely don't want to talk about it with people I see once a week. I've always been a "home body", I feel like I've been doing a bit more since being more physically capable, but not because I want to, usually because people are pressuring me. I don't stay home because I can't go out, I prefer to watch a movie at home over going to the movies. I'd rather BBQ than eat out. I like to do things around the home and i am pretty independent, not overly interested in relationships... What do you think he's missing out on? Are you friends like you're over there every day? If not, maybe he has a very fulfilled life and you're not aware of it?

Well, he is my father, and I am trying to understand him better. It is not that he is not happy. On the contrary, he shows high spirit and he is self-motivated all the time. I just wanted to know that he could do anything if he chooses so. That is all.

Okay, that sheds some light. I definitely understand why you're concerned now :) It's very sweet of you to come here trying to find answers. I hope he will consider joining a group of some kind so he can see that he is normal and that he's not alone. It's really a hard topic to discuss, especially with people who aren't in the same situation. I do not talk with my family about it, none of them are very understanding. he is lucky to have a child who is so invested in his well-being. I wonder if he can be reconnected at this point, I don't think it's the amount of time but possibly that his is permanent. It really depends on what parts he has and what he's lost. If he has a rectum and anus , i would think it's possible, but at the same time, if it were, I am sure he would have considered it by now if he wanted to.

I don't think he needs a support group. However, from time to time, when this topic comes up, I try to remind him that he is not alone, and permanent colostomy could happen even these days, even though he doesn't complain.

I asked him once why he didn't reattach it, he told me that the doctor who did the surgery tried his best to do that, but he couldn't. That is all I know. I don't know the details; what parts and how long of the colon were removed. I am not sure if things can be corrected now. I will try to ask him to check this option again.

I just would like to add that he seems very normal from the outside; physically and psychologically. If someone doesn't tell you that he has a colostomy, you probably won't know/notice.

Post Edited (DavidOstomyQ) : 8/24/2015 2:07:42 PM (GMT-6)

Posted 8/24/2015 8:05 PM (GMT 0)

AnnaIvy said...
This is probably something he already does, but I'll mention it anyway: whenever I'm going to be out for a while, I bring a stoma bag, wet wipes and change of clothes with me, just in case. I've never had to use it, but it's reassurance that I can clean up should I get an unexpected leak.

Also, why not just ask him how he feels and whether he doesn't want to do much because of the stoma? You're the one in the best position to decide if this is a good idea or not, but I wouldn't rule it out just because it's a personal subject. It could make things a lot more simple, if the stoma has kind of become the elephant in the room, it may help to just acklowledge it.

I am reluctant to do face him directly, because even if he has some kind of restrictions he won't let me know. I know him in this regard. That is why I resorted to the Internet.

Post Edited (DavidOstomyQ) : 8/24/2015 2:09:14 PM (GMT-6)

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