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This page deals with lifestyle.
Your doctor has told you you need ostomy surgery, or maybe you've had an ostomy for a little while, and you've got questions! Who do you ask? Where do you turn? No problem, I've got ya covered! Speaking from my personal experience and several years of talking to kids, teens and older folks, I've got the scoop on how to deal with just about any situation.
My name is Courtney Francoeur, I'm 20 years old and in my second year as a psychology major at the University of Western Ontario in London. On March 3, 1999, at the age of 15, I had to have a subtotal colectomy with a temporary ileostomy because of Ulcerative Colitis. My journey continues in May of 2004 when I'll have my ileostomy reversed into a J-pouch. Through experience, a positive attitude and appreciation for life, through trial and error, and by talking to other people, I learned how to cope and succeed with my ostomy, and I'd like to pass along some of my advice.
How to Reach Me
If you have any more questions, please feel free to contact me either by email at
or by posting a note to me in the discussion forum. If you post your note in the discussion forum, people all over the world will also get the chance to benefit from your question. But if you don't feel comfortable posting it to the public, just email me personally. I check my email and the discussion board almost daily, so you'll get a quick response. Can't wait to chat. Best wishes and remember ... never keep your poop to yourself! 
Hi! My name is Nicole Dodds. I'm 12 years old and in Grade 7. On June 26, 2003, at the age of 11, I had to have an ileostomy because of Crohn's Disease and Ulcera- tive Colitis. If you like, you can learn more about me and my journey by reading my personal story, which can be found in the Young Ostomates section of this site.
Through personal experience and the support of my family, I learned how to cope and succeed with my ostomy, and I'd like to pass along some of my advice. On April 24, 2004, I became a certified visitor in LDOA's Patient Visiting Program, and I look forward to helping kids who are new or about-to-be ostomates adjust to this new stage in life.
• FAQ added February 10, 2004
• FAQ updated April 24, 2004
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This page has a built-in search engine wherein you can search for specific words and be taken directly to that point on the page if such words are found. To find repeated instances of the same word, press the "ALT + S" buttons on the keyboard (works in Internet Explorer only). The search box is not case-sensitive.
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Is an ostomy a life-long thing? |
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Courtney • It could be depending on the severity of your disease or your prognosis. Everyone is unique and has to talk to their doctor about their own best interests. If you had a colectomy, it is usually classified as a life-long ostomy. If you have an ileostomy, it could be temporary but depends on your body.
Nicole • Not necessarily. If you are a candidate for the procedure, you can get a reversal. You never know because it’s different with each individual.    |
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Do I have to wear a pouch every day? |
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Courtney • Yes, there is no taking it off. But look at it this way – you get used to it that much faster! |
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Where do I buy my ostomy supplies? |
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Courtney • There are a number of places where you can buy your supplies, depending on your location. Most drug stores carry them and, if they don't, you can ask and maybe they'll order them for you. Before moving to London, I lived in a really small town (only one traffic light that never changed – LOL) and the one drug store ordered my supplies for me. You can also order them from ostomy suppliers on the Internet (be careful about the exchange rate if you order supplies from an American or other foreign supplier). If you live in London, go to this page on this web site, Ostomy Suppliers, and you'll see a list of all of the suppliers in London and the surrounding area. |
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Where do I store my ostomy supplies? |
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Courtney • The best place to keep your supplies in all together on a shelf not directly in your bath- room (because steam and heat affects the sticki- ness of the flanges) just outside the bathroom. A towel or linen closet, your bedroom or a spare bedroom, whatever is really close to the bathroom, are good places to keep your supplies.
Nicole • I had the same question because I had been given all kinds of ostomy samples. I decided to put my boxes of flanges and bags in the cupboard underneath the bathroom sink. I put the rest of the accessories needed to change my appliance in a spare drawer in my bedroom. The key in storing your supplies is to be organized and, if you’re not, well, you’ll have a big mess to clean up! |
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Should I keep extra supplies? |
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Courtney • Yes, keep extra supplies handy just in case your flange leaks or something along those lines. But don’t keep too much because the sticki- ness on the adhesive part lessens the longer you store them. Plus, if your stoma shape changes and you bought too many pouches with pre-cut openings, you're stuck with them! |
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Should I carry an "emergency kit"? |
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Courtney • Yes!! Take it with you wherever you go. You never know when you're going to need it. Here is my emergency kit:
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What do I do when I make a mess with my ostomy? |
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Courtney • Unfortunately, this is a common occurrance. Most of the time, this happen at night. You may wake up with poop that has leaked out of your flange onto you. This tends to happen a lot more when your ostomy is new, but I have found after time that you become very accustomed to having an ostomy and will wake up periodically to check your ostomy to see if you feel a little wetness. After awhile, you won’t even realize that you do this. And you'll become very familiar with 3:00 a.m. showers! The best thing to do is guard your bed with a protective sheet under your mattress cover. Then rinse your dirty clothing and sheets and wash them the next day. Everything should come out fine. If you leave it for a longer period of time, your clothes and sheets will probably stain. |
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What will my poop be like? |
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Courtney • You should try to keep your poop's consistency similar to toothpaste. The food you eat determines how thick or watery the consistency will be. Too watery = bad because you'll get dehy- drated very quickly. That's why when you're sick, you must drink lots of fluids. Too thick = bad, too, because this is how most blockages start. |
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Will my poop ever be solid again? |
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Courtney • Concerning ileostomies, nope. It may be a thicker consistency, depending on what you eat, but it will never be solid again. |
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Will I be able to pass gas? |
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Courtney • By way of your bum? No! Yeah, no more embarrassing moments in the middle of class or when you're talking to the cute boy/girl! On the other hand, you'll still pass gas but it will exit into your pouch. So after a while (especially if you have large quantities of gassy foods/drinks), you may have to "burp your bag". By this, I mean you may have to go to the bathroom or wherever and open a section of the pouch and let the gas escape so the pressure doesn't pull your pouch off.
Nicole • Out of your stoma, yes. Out of your bum, no – which is actually an advantage because now when someone says "Ew, Nicole did you fart?", you can reply with, "Sorry Dad, but I can’t fart. Guess you’ve been caught red-handed!" |
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How do I empty my pouch? |
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Courtney • I suggest you place the pouch between your legs and empty it between your legs into the toilet, squeezing from the top down until every- thing has emptied. Check out this picture to give you an idea:
Nicole • I dump my bag when I’m sitting down properly on the toilet and empty it between my legs into the toilet water, like the picture above. |
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How often should I empty my pouch? |
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Courtney • You should empty it every time you go pee. Even if there's just a little bit in your pouch, that's a little bit less that adds up when your pouch starts to fill up again. If you don't want to empty it every time you pee, I would suggest more frequent bathroom breaks so that it doesn't show underneath your clothes. An excellent rule of thumb is to empty your pouch when it is 1/3 full.
Nicole • At least 3-5 times per day. |
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What do I do when my ostomy makes a noise? |
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Courtney • Classically, I blame it on my tummy growling. This excuse works every time because your ostomy's noise does sound like your tummy growling and it comes from your abdomen area. I also found that if I crossed my arms over my stomach where my ostomy is, it tended to muffle the noise enough so on one could hear it. |
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How long will I have to wait until I can go in the sun with my scar? |
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Courtney • I suggest waiting at least 5 months minimum before you go in the sun with your scar so that it can heal properly and it won't turn funky colours on you! The longer you wait, the better it is for your scar.
Nicole • Wait until your scar fades completely, which will probably take 2 years. |
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Do I have to wear baggier clothes because of my ostomy? |
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Courtney • I wear the exact same clothes that I wore before my surgery! Hip huggers and normal shirts – nothing has changed. The only part I have to watch is how full I let my bag get when I'm wearing tight jeans. It shows more when wearing tight jeans, but I’ve had some friends for years who know I have an ostomy and still don’t see it or understand where it is. Higher shirts are a little bit of a problem if you don’t want people to see the top of your ostomy. If you feel more comfortable wearing looser clothes, that’s OK. Your pouch will move around more freely. Personally, I find some- what tight clothes help keep my bag in place. Or you can tuck the bag into your underwear, which I also do sometimes. My advice would be to just wear what you have always worn and if the style bothers you, then change whatever is bothering you. Oh, and bar clothes are OK, too. LOL
Nicole • Well, if you feel comfortable in baggy clothes then, by all means, wear baggy clothes but, if you want to still wear some tighter fitting clothes without anyone noticing that you are wearing an appliance, just empty your bag more often so it’s less noticeable. |
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Can I lie on my stomach? |
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Courtney • Of course you can! But I would try to make sure that your pouch is mostly empty because pressure can push the contents back inside and cause infection and that's not good! This was one of my biggest worries for the longest time and once I finally tried it, it wasn’t half as bad as I thought. You'll also get used to "how" you can lie on your stmoach without bothering your ostomy (like with your leg kinda half propped up and therefore that side of your abdomen isn’t necessarily pressing against the floor's surface but it still looks like you're lying on your stomach). |
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Why do I still get the urge to go to the bathroom through my bum? |
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Courtney • This is normal for the first bit. Those urges are called "rectal phantom pains" even though they aren't painful – at least they shouldn't be. Your body is used to using those muscles constantly and now has to adapt to not using them. This will take a while to go away, but eventually it does. |
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Will an ostomy affect my having children? |
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Courtney • Any type of illness could affect you having children but, most of the time, Crohn’s and colitis doesn't affect your sexual organs and therefore should not affect your ability to have children. Some women report having more diffi- culties getting pregnant but this can happen with any type of disease. However, it's always a good idea to talk about the decision to become pregnant with your doctor and he/she will be able to tell you what's best for you based on your individual circumstances. |
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What's a reversal? |
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Courtney • A reversal is an operation, also called a J-pouch procedure. This procedure is for someone who has an ileostomy and has a chance to have their intestines reconnected. That's why it's called a reversal (you get reversed to the way you used to be). This option and procedure should be talked about in great detail with your surgeon so you know the exact implications of the surgery. Basically, the surgery is taking the small intestine, looping it together to make a reservoir and reconnecting that to the rectum. A temporary ileostomy is placed on the other side of your abdomen until the next surgery where they remove the temporary ileostomy and see if your body can function normally again. I will be having this procedure done in April of 2004, so ask your doctor or you can email me at
or post a note for me in the discussion forum if you would like more info. |
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How long do I have to wait to get a reversal? |
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Courtney • This depends on your body and how severe your disease was. Some people are lucky and can have the reversal within a year after their ostomy surgery. And then there are some people – like me – who have to wait five years before I can have a reversal. In March 2004, I will have had my ileostomy for five years but it hasn't stopped me from doing anything, from school trips to playing in the snow. So the waiting time can be anywhere from about 8 months after the initial surgery to a limit of five years. At the five-year point, you have to decide what you want to do: make the ostomy permanent or try for a reversal operation. It all depends on your situation but, whatever your options are, make sure that you talk about them with your doctor and take your time to decide about what you would like to do! I would suggest doing a pros and cons list or something like that to help you to make up your mind. And it's always good to talk with other people who have had the reversal operation done.
Nicole • I hate to say this but as long as your doctor says so. |
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