Tips for Managing Social Life with a Colostomy

Hi There

I am a 36 year old female married to a 39 year old man who has a colostomy after being diagnosed with colon cancer 5 years ago. Our lives are pretty normal and we go about things the best we can but once in a while the situation gets to me.

I don't know anyone else with an ostomy so I wonder how other people deal with it.

I think that we have lost friends and a big chunk of our social life since this happened. Not in an overt way but subconciously over the years. I feel its a little but hard to get close to new people due to the many emberrassing and stressful situations that could occur and have occured.

Does anyone else feel a little bit isolated?

Does everyone in your life know about the ostomy and do you keep it a secret or tell people right away?

Do you make an effort to conceal it at work?

Do you ever feel on edge in social situations.



I think the situations hardest on me is outing with new people involving food like parties and dinners and stuff.



I would love to hear your thoughts.

Hi Vik, I also have a colostomy due to colorectal cancer. I had it constructed nearly 4 years ago when I was 31; I am now 35. If you don't mind, I'm going to spend a bit of time waffling away for you, lol.



I have just read your other post concerning your husband's frequent blockages, and in my opinion, it cannot be ruled out as one of the many underlying causes of your husband's insecurities, as is the complete overhaul of your lifestyles since your husband's radical surgery, and also his concern at how you cope with his current situation.



Under normal circumstances, most folks with a 5-year-old colostomy should be predictable enough to be able to live your life around it. For example, my main "poo" of the day generally happens sometime between 4-7 AM, when I am asleep, and only at infrequent times do I have to change my pouch during the day, but this kind of depends on what I have been eating/drinking throughout the day.



I can imagine your husband's situation to be very different, as you mentioned that he has blockages 7-10 times a year. For a start, this is an unusually high amount of blockages, and the underlying cause really must be diagnosed if your husband is to get back to any resemblance of normality. Blockages are an agonizing experience; I have had a couple over the years and lass, I wouldn't wish them on my worst enemy. The pain comes in waves and, in my "male" opinion, it's the closest thing that we males will experience that comes anywhere near childbirth, lol. As blockages occur, a whole range of embarrassing situations have a tendency to occur also, as before, after, and during the blockage the bowel is simply trying to do its normal thing but can't because it is being blocked by something from what I can gather from your posts, on a 6-weekly cycle.



Blockages can be occurring days or even weeks before you feel any pain, so your husband's guts probably feel like a rollercoaster pretty much all the time; it can't be much fun for him. You really should push to get a proper diagnosis of the underlying cause.



Are you aware of any underlying diseases that would slow his transit time? Is he on any medications that have a tendency to lead to constipation? Is he eating balanced meals regularly, chewing properly, and drinking plenty of fluids? A common misconception is eat less, poo less; if your husband is doing this, then he really must change his eating habits. Regular well-balanced meals under normal circumstances will over time lead to predictable output. Avoiding foodstuffs such as vegetables and fiber that bulk up stool is also in some ostomates skipped, as they try to have the stool solid enough to prevent leaks. I have come across this many times and it is so not smart. If your husband is doing this, then have him stop it right away.



Another word that springs to mind is "adhesions," fibrous tissues that form after surgical operations can have a tendency to attach itself to other tissue, especially at any time after bowel surgery, causing a narrowing of the bowel, leading to high frequent blockages. When was the last time your husband had a scope?



Once the underlying problems of regular blockages are taken out of the equation, you should start to see the quality of life improving for you and your husband. He is around the same age as I am and had his colostomy formed in his early 30's like I did. Lass, it was a huge knock to the system for me. Us blokes consider ourselves still in our prime at that age; we have come through our 20's, generally know what we want out of life, and set the paving stones for that path. And then all of a sudden "wham!", the rug is pulled from under your feet. It feels like you are no longer in control of your life, your destiny, your vanity, or anything else you have worked on over the last 30 years of your life. It is a daily kick in the nuts and certainly not something to look forward to when going to sleep at night.



But there are a few things that help cushion the blow. I don't know how open your husband is and how he deals with speaking about it with others that he respects/works with/socializes with. As you are fully aware, us men are naturally competitive in nature no matter how subtle, lol, and returning to one's place in the social ladder after such an operation is a frightening, daunting, and at times a very nerve-wracking experience, and often breaks the best of us. It's the fear of rejection and ridicule, and how others are thinking/talking about your situation whilst you are not around that's the real headf**k.



How I finally overcame those hurdles (but by no means eradicated them) happened completely by accident. A while back, I started a foundation for "us folk," and to raise money, I organized a climb of Ben Nevis and asked all the local shops/businesses if I could pin up a sponsor sheet in their premises. They all agreed, and not before long I had lots of phone calls from people in my area wishing to join the climb/give money and give lots of encouragement. I was blown away, Vik. The past 2 1/2 years I had been battering my brain, trying to hide the fact that I had an ostomy from the rest of my village; only my family and a few close friends knew. When in actual fact, nothing but respect showed in the actions of everyone I knew and more so from people I had never met!



Perhaps motivating your husband to take part in a sponsored event to raise money for a Cancer/Ostomy group in your area may be the breakthrough that he needs. That way, he doesn't actually have to tell anyone; they all know as they have read about it and are sponsoring him, lol. Your local Ostomy chapter may help you with this, http://www.ostomytoronto.com/.



Lastly, and most importantly in my opinion, and please don't take this the wrong way. But I think judging by the way you wrote your post, your suffering + his suffering = that it really can't be that much fun for you at the moment.



I'm afraid I'm single so I can't ask my partner to come in and give you some encouragement, but perhaps a few of the other male ostomates' wives could find the time, if willing, to approach you. If not on here, then through the Toronto Ostomy Chapter link I just gave you. I do know they have monthly meetings, social outings, and support families as well as the ostomates themselves. I do recommend that you have a wee look at it.



If your husband would like to chat with someone who is in a similar situation, then he is more than welcome; just ask and I'll PM you my contact details.



Take care, Vik.

Hi Sweede

Wow, we have a similar situation in some ways.

You and my husband had cancer at the same age. He was misdiagnosed for at least a year because everyone thought he was way too young for colon cancer. Was that your situation as well?

It's really nice to talk to someone with such a similar situation.



"I have just read your other post concerning your husband's frequent blockages, and in my opinion, they cannot be ruled out as one of the many underlying causes of your husband's insecurities, as is the complete overhaul of your lifestyles since your husband's radical surgery, and also his concern at how you cope with his current situation."



I don't think my husband has very many insecurities; he is a very confident, optimistic, easy-going guy. I am afraid it is me who feels this way. He does not really even know I feel this way. I do agree with you, the blockages cause my massive anxiety. I am terrified when we travel that something will happen to him and he won't be able to get to a hospital in time. Time changes are kind of bad for him as it throws off rhythms. I listen for him at night to make sure he is okay and if I hear him get up to go to the bathroom (he does this rarely, I get an onrush of fear) it used to be easier but very hard to cope with it with 2 young kids in the house, 2 and 2 months old. I can't take him to the hospital now, etc, etc.

Anyway, our lifestyle change is really a lot my doing. Like I said, it's not overt, never been discussed, just a gradual withdrawal from some aspects of society.



"Under normal circumstances most folks with a 5-year-old colostomy should be predictable enough to be able to live your life around it, for example, my main 'poo' of the day generally happens sometime between 4-7 am, when I am asleep, and only at infrequent times do I have to change my pouch during the day, but this kinda depends on what I have been eating/drinking through the day."



See, this is the issue exactly. You have to watch what you eat and drink and when you go out to people's houses and travel with them you have no idea what is in the food and are sometimes forced to eat what they serve. We have been badly burned a few times. Yes, we know better now but I hate it when this happens.



Yes, the blockages are agonizing for him and I agree, I need him to take control and responsibility in trying to solve them. The thing is they usually affect me severely. I have to compensate and pick up the pieces, in addition to watching him in agony in the ER room. I have a phobia of even driving by the hospital these days.

The thing is my husband is in deep denial about this kind of thing. He never complains or tells me he is sick until it's too late. He usually thinks he can beat it himself with enemas and ends up in worse shape. It's like I cannot really trust him to tell the truth about his health until he is doubled over.



"Blockages can be occurring days or even weeks before you feel any pain, so your husband's guts probably feel like a rollercoaster pretty much all the time, can't be much fun for him. You really should push to get a proper diagnosis of the underlying cause"



This is good to know. I think his are pretty sudden. He does not usually have any warning and feels perfectly fine one minute and sick the next.



-not on any medication, won't even take cold medicine.

-NO, not plenty of fluids, this is an issue I know but how do you force a grown man to drink.

-the food is not an issue, he avoids all the right stuff and does eat small balanced meals. This is also why restaurants and people's houses are an issue for us. Almost always causes a problem.

-his scope was a while ago. He just gets the regular CTs. I want him to revisit this whole scope thing this month when he has the dreaded check-ups.



Do you have the 6-month checkups as well?



Yes, I agree, it was a huge blow. I guess the only thing is we dare not complain because we feel lucky enough to just have survived the cancer that the colostomy pales in comparison.

Also, my husband is such an optimist that he never really had a day of depression about it. He does not usually feel down on himself, has no problem being naked around me and stuff. This is a huge plus because it would be so much harder if he developed hang-ups. Obviously, I love him the same, the colostomy is not an issue there.



Wow, what you do with the foundation is great.

I don't think we make an effort to hide the colostomy, it's not like we are ashamed of it or anything, we just feel it's none of anyone's business. It has to do with the toilet and other people don't usually make it public, why should we.

Also, we have had some bad experiences with people's reactions. Some people did turn away. Stopped inviting us. I know they are not worth our time but still makes it really unpleasant.



Honestly, we don't deal with or address the colostomy on a regular basis, we don't really have the time to be obsessing about it. Once in a while it gets to us. I would love to find a way to eradicate the blockages, you are right, it would really improve our lives if it was not always at the back of our minds.



So obviously, you are very comfortable with your ostomy.



Can I ask,



-when do you tell someone you are dating

- has it ever deterred you from dating

-do you think anyone ever rejected you based on it

-are you perfectly comfortable with it in a sexual situation



I am so curious about how people with ostomies find mates, although judging from this site it seems a lot of people who had it before finding a mate are single



It's so cool that you live in Scotland. It looks so beautiful, I have always wanted to go and we have tons of family there. My husband is originally from England.

I think the rain would kill us however, we both hate it.

I'm 47, when I got my colostomy due to colorectal cancer my wife left me, I lost my wife and family not to mention my job and pretty much my life. over the years it has been a difficult journey, I biggest wish is to talk to more people about it, I believe through sharing and talking we can encourage each other in all areas of life. Yes i fell isolated, lonley, orphaned. and everything eles.. everybody handles it differently, i know i need to but its hard and am looking for some friends to make it better. If you want to chat let me know..God bless Michael

Hi Vik, yes i was also mis-diagnosed for a few months, they came up with all sorts lass, apart from the obvious lol, as often it cost less just to make up some way off diagnosis, keeping within the national guidelines to cut costs, helps no-one in my opinion. If life was that simple, we'd all be the same huh?.



I have always told potential dates about my ostomies before hand, as it kind of gives them a get out clause, before it goes anywhere, if they don't seem to mind too much, then i have an inkling of that as the date progresses, and it has often deterred me from dating.



I do belive i have been regected many times because of my ostomies, but not blatently, i don't really get many girls knocking on my door these days, but hey.



I'm afraid having 2 ostomies, no prostate, sterile and living on the wrong side of the mountains have taken me out of the game somewhat, so i generally tend not to bother because it very often tends to lead nowhere, and it's just me that gets hurt.

So dating "normal" girls, for me anyway, is more trouble than it's worth, I've yet to date a fellow ostomate, but feel if i am ever to find that soul mate i'm searching for, she would most likely have to have an ostomy. Does this make sence?



Sorry if i gave the impression i was "very comfortable" with my ostomies, i'm not. I am very content with them, so i guess i can't ask for better than that.



Feel free to keep asking questions, i'll try to asnwer them as best that i can

Take care Vik, say hi to hubby.x

Words of Encouragement from Ostomy Advocates I Hollister