Everyday hacks for a colostomy wearer.
February 24, 2011 6:24 PM   Subscribe

What things should I know as someone who has just received a colostomy?

Last week, I had emergency surgery for a perforated bowel. The colostomy is temporary and it's placement allows me to eat pretty much whatever I want (so I'm told) and doesn't require I change my bag more than once or twice a day.

I have a great nurse and home care set up, so all the technical things like changing the colostomy unit (or whatever it's called) will be figured out. But what about the other stuff? I'm thinking of specific things, like how I can eat to minimize output, what I can do to regulate when bowel movements happen (especially since I have NO IDEA when they happen, no feeling at all), and how I can dress to hide the device. (I am a lady.)

I'm particularly interested in fashion advice from ladies who have experienced this. I like high-waisted fashions, so that is one good thing, but normally I tend towards fitted skirts and pants, which I don't think will be the best choice in this situation. For the record, I'm a 30-year-old woman, curvier on the top than on the bottom, and I work from home so office clothes are not necessary.

Also, if you had a colostomy (temporary or otherwise), what do you wish you had known when you first got it? What did you learn that a nurse couldn't really teach you? What general advice would you give me?

I know this is a subject that can be embarrassing or private, so if you want to memail me or send me a message to the email in my profile, that would be great. I'll add good suggestions to the thread here for future questioners.
posted by Felicity Rilke to Health & Fitness (8 answers total) 2 users marked this as a favorite
Regarding output, I believe the magic phrase to search on is "low residue diet."
posted by adipocere at 6:28 PM on February 24, 2011

One of my best friends in high school had a colostomy bag for about a year, I think. I don't know exactly how long she had it because in fact I didn't even know she had it until a couple of years after it was removed. She wore our school uniform (a white shirt, not particularly baggy) and a kilt). On civies days she wore jeans and regular old not particularly baggy t-shirts or sweaters.

By this I mean to say, you may fee like people can see it or that people who you don't know or only know casually know all your private business. I know she said that she worried about this. I am here to reassure you that my best friend had a colostomy bag for a year and I didn't know until she told me two years later. Nobody knows.
posted by If only I had a penguin... at 6:30 PM on February 24, 2011

Sorry to hear about your emergency -- glad you're doing OK and that the ostomy is temporary. I had a temporary ileostomy this past fall for about 7 or 8 weeks as part of my cancer treatment, so my experiences were similar but not quite the same as what you'll experience. That said...

Clothing-wise, I mostly wore loose-ish yoga or lounge pants, pregnancy jeans (with the stretch panel), A-line skirts made of non-body-hugging fabric (i.e., denim or twill) and loose or empire-waist tops. The physical placement of your ostomy and your body type may actually make it possible for you to wear more fitted clothing than worked for me, though -- your nurses may have some good info on this score.

This was a pretty useful book in terms of dealing with the psychological and logistical challenges, though I found it a little rah-rah for my tastes. (Sorry I don't still have my copy; I'd send it to you but I already swapped it on Paperback Swap!) There's a lot of info in there specific to colostomies rather than ileostomies that might be especially useful for you. My sense is that learning to regulate bowel movements with a colostomy is something that takes time (i.e., you have to have your ostomy several months or longer) -- so if "temporary" in your case only means a matter of weeks or a couple of months, it may not even be something you'll have time to try to learn.

There are also discussion boards at the United Ostomy Association of America; I never posted there but I know others who did and found them very helpful on topics from diet to clothes to equipment.

The number one thing I did to keep myself mentally positive when I'd get really down about it was to tell myself "it's only X weeks; I can deal with anything for X weeks." Also, accept that learning to change the appliance will take some time and practice -- you probably won't be any good at it at first, or even for a few weeks. There may be some trial and error in finding exactly the right supplies that work with your body and skin type. This can be frustrating but you really will find after a few weeks that you're progressing along the learning curve. My nurses were also extremely helpful and compassionate, which helped a great deal -- it feels like this overwhelming thing and they're all TOTALLY "been there, done that" about it, which was awesome.

Also, you want to plan ahead for when you'll be reversed and the plumbing will be back to normal... so, with your doctor's approval, consider doing Kegel exercises to keep the relevant muscles from getting too weak.

And kudos to you for being willing to talk about it! I wouldn't discuss it with anyone outside my medical team or immediate friends/family till after it was reversed because it was so mentally upsetting to me.
posted by scody at 7:02 PM on February 24, 2011 [1 favorite]

Hi Felicity Rilke, my husband (now ex) had a colostomy. His was/is permanent. I learned a lot through the process. My ex gave up trying to understand how to regulate "output", but I do remember that he tried to eat at very regular hours. We also had a female friend who had a colostomy. She liked wearing a Jumper Dress. She always looked cute! I think she preferred the jumper (she had several in different colors) because the colostomy bag sometimes poofs out (I am sure you've experienced this).
My ex was remarkable in how he handled what happened to him. He played golf the very next week after receiving his surgery. Ex had learned that Al Geiberger (pro golfer) did fine with his colostomy and knowing that really buoyed him.
Here is a website that may help (with information about diet).
posted by naplesyellow at 10:45 PM on February 24, 2011 [1 favorite]

Your attitude sounds great, especially with it being emergency surgery.

Don't be frightened to change the variety or brand of 'appliance' if it doesn't seem to work so well. My nursing support insisted that adhesive systems would be the best,as I did a great deal of exercise, however a click-lock system worked much better for me. Oh, don't wait until the bag is more than half full. Trust me on this one, it allows a little wriggle room.

What takes everyone by surprise (and continues to) is the noise it makes! Completely uncontrollable, and difficult to hide. The best way of dealing with this I find is press down on the site to muffle the sound. As others have said, eating regularly helps, and although everyone is different, it will be more active in the morning, after you eat and coffee.

As far as clothes and things go, I don't find it makes much difference, although my shape is the inverse of yours (pear shaped). Special underwear or the like is not required. If you are doing a lot of exercise (running intensity), then it would help to wear support underwear to prevent hernia development.

I suggest that when leaving home, take as well as a couple of spare bags, some nappy sacks (diaper disposal bags) which neutralise the smell, and baby wipes.

You may find that certain foods do affect you differently than you would expect. Fish for example created bad odours for me. A really good website (UK based) with member questions worth searching is Ostomyland.

Feel free to email or contact me if there is anything else you would like to know.
posted by Flashduck at 1:39 AM on February 25, 2011 [1 favorite]

A relative has one. I went to a maternity store and bought one of those "belly belts" (I believe it's called) to help hold it in place.
posted by The corpse in the library at 9:32 AM on February 25, 2011 [1 favorite]

I didn't go to the store. He did. No idea why I wrote that.
posted by The corpse in the library at 9:33 AM on February 25, 2011

From someone who prefers to remain anonymous:

First off, Colostomies are moderately challenging but you will learn to live with it. The biggest challenge is that you can no longer hold your gas and/or release it discreetly. So expect to have embarrassing farts at inopportune times. If you have the confidence, tell your friends, family, and co-workers so they don't wonder why you're suddenly gassy. If you hear rude comments just tell the person you have a colostomy, they'll shut up (my wife is too shy to do this but she's also never had too). To reduce the risk of gas at key times, watch what you east for about 6-8 hours prior to the event. A three o'clock meeting? Don't have eggs and milk for breakfast.

Since your feces are missing some of the processing before coming out, they tend to be smellier than the typical poop. If the smell bothers you the Colostomy nurse should be able to direct you products that work well. I have NEVER told my wife that the bathroom is smelly, she knows it and I'm not going to bring it up and embarrass her. With regular changing the bag never smells. Just to be safe my wife tends to wear perfume when going out.

There are lots of different types of bags, if you have good insurance you should be able to try different brands and see what style (disposable, drainable) works best. Your Colostomy nurse is a good resource for this. Actually she's a good resource for any questions.

If you're planning to have sex, it helps to have an empty bag. Some people have a large band-aid like cover that they cover the hole with instead of installing a bag, it's less obtrusive. If you're self-conscious wear a t-shirt, cummerbund, or even a corset. The sound of plastic on your partners skin can be distracting.

Sometimes the bag will fill up with gas and may even protrude a bit. Many bags have a vent and you should be able to release the gas. Just be warned it might smell. That would be the only time anyone could possibly notice it and even then only if they are looking closely.
posted by Felicity Rilke at 5:40 PM on February 25, 2011 [1 favorite]

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