People like to ask questions about everything, and when it comes to an ostomy, there are often a lot of questions on our mind.
Here’s a list of some of the most asked questions. It’s not complete, and my own personal experience has been with an ileostomy, but if you have a question about living with an ostomy, please let me know!
If you’re interested in checking out some of the video Q&A’s I’ve put together, have a look below:
- 3 Years With an Ostomy: Q&A’s
- OstomyLife Roundtable Discussion (q&a with several ostomates, including myself)
- Ostomy Tag video (quite a few Q&A’s here)
- Check out my interviews page for more Q&A’s.
I’m confused by all of this ostomy lingo!
No doubt! It’s like learning a new language! Fortunately, I do have a Glossary of Ostomy Terms that will come in handy =)
What is an ostomy?
Short answer: An ostomy is an artificial opening in the body that’s created during an operation.
For a long answer, check out THIS article.
What is a stoma?
A stoma is the opening through the skin made during ostomy surgery. This is where the contents of your bowels or bladder will empty out of.
Some stomas are flush with the skin, but most protrude slightly.
Healthy stomas are nice and red, and they are all wet to the touch.
For more info on stomas and a photo of one, check out THIS article.
What is an ostomate?
An ostomate is someone who has an ostomy.
What is an ostomy bag?
An ostomy bag or ostomy pouch (often called a colostomy bag, although that only applies if you actually have a colostomy) is used to collect the feces or urine that comes out of a person’s stoma.
These are nearly always made of some type of plastic, although they come in many different styles and sizes.
For a more in-depth look at ostomy bags check out THIS article.
What is an ostomy wafer/baseplate/flange?
The wafer, which is also called a baseplate, is the part of an ostomy appliance that sticks to your skin.
The flange would be the part that connects your wafer to your ostomy bag on a two-piece system; one-piece systems don’t have flanges.
For a more detailed look at ostomy wafers, please check out THIS article (which includes a video)
Does it hurt to have an ostomy?
Generally, there should be no pain. The only time I’ve experienced pain with my stoma was after surgery (for a few months) and when I have a blockage. If you’re having unexplained pain, you should talk to your stoma nurse or surgeon.
Does your ostomy smell?
Poop comes out of ileostomies and colostomies and urine comes out of urostomies. There will be an odor when emptying our pouch and during appliance changes.
There should be no odor when you have your pouch on.
If you notice odor while your appliance is attached, you might have a leak, improperly fitted appliance, clogged filter/ineffective filter, or a dirty outlet. There’s quite a bit you can do about odor, and I’ve put together several suggestions HERE.
Will I be limited with an ostomy?
For the most part, no, but it can depend on your overall health. If you’ve been sick with IBD, chances are that your ostomy will enable you to do things that you weren’t able to before surgery. There are many active ostomates who do everything from biking to skydive! Some accessories can help keep your pouch secure and/or protected from water. Don’t use an ostomy as an excuse to limit yourself!
Will I be able to travel with an ostomy?
Absolutely! Many ostomates (myself included) have traveled by plane after surgery. There are a few extra things you’ll need to note about packing supplies, but it’s not a problem.
I’ve put together a three-part travel series, which you can read HERE.
I play contact sports, will an ostomy limit me?
Firstly, make sure you get cleared by your surgeon before getting back into sports.
If you’re concerned about getting hit in the stoma, you might want to invest in a stoma guard. I’ve reviewed several of them HERE.
How often does your pouch need to be emptied?
This will depend a lot on what you eat (quantity and type of food), whether you have a colostomy, urostomy or ileostomy, whether you have ongoing health problems or if you have what’s called “Short Bowel Syndrome”. I empty my pouch about 7 times in a 24 hour period with my ileostomy. Some colostomates may only empty their pouch once or twice a day. The average for many ileostomates is about 4-8 times a day.
Also, know that if you are emptying too often, you may be at risk for dehydration and you should let your doctor or stoma nurse know.
I have an in-depth article and video exploring this question further, which you can find HERE.
Is it uncomfortable to wear an ostomy pouch?
Not really. I often do feel my pouch once it starts to fill up, but it’s not something I’d describe as uncomfortable or painful. There are many accessories like belts, wraps, tapes, etc., that can help keep your pouch secure.
Does it take long to change an ostomy pouch?
It takes me about an hour to make a complete pouch change, including a shower, shaving my abdominal area and taking photos of my stoma (yes, I keep track of what my skin looks like!). I could get it done in less than 15 minutes, but I really like to take my time, give my skin some air and take things slow. Also, depending on how many supplies you need, it could take more or less time. If you have a skin issue, you’ll likely want to take more time cleaning and prepping the skin before applying your appliance.
I’ve put together a video showing how I change my appliance HERE.
Can I still wear a seat belt?
Believe it or not, this was one of the pressing questions I had before my surgery. I didn’t know if having a seat belt over my stoma would mean I couldn’t get in a car anymore. Fortunately, depending on where your stoma is located, this may not even be an issue. Seat belts come right over my stoma, which makes thing uncomfortable, but there are accessories we can use, like a seat belt cover or stoma guard, which protect our stoma. I do NOT recommend leaving your seat belt off, or loosening it with a clip or modifying it in any way – you will not be safe.
Will I have to be on a special diet?
There is often a special diet recommended immediately after surgery. For ileostomates, it’s usually a very low-fiber, highly-processed diet, since it will reduce the chance of a blockage early on. For most ostomates, our diet doesn’t change and many (like me) of us are able to eat foods that we weren’t able to before surgery. It’s always best to check with your surgeon, stoma nurse or a dietitian when it comes to eating after surgery, as you may have special considerations that need to be adjusted for.
Once you are past your recovery (usually 6 weeks), you should be able to safely transition to a more standard diet. More tips on eating after your recovery HERE.
Can I shower with an ostomy?
YES! Why not? Water won’t hurt your stoma and soaps and shampoos will wash right off. Nearly all appliances are waterproof and many pouches will dry quickly with air. Sometimes you may need to protect your wafer from water if it peels a lot, but there are products that can help you with that.
I tend to shower without my appliance, and sometimes my stoma poops up a bit. It’s nothing to worry about and it’ll just wash down your shower drain. If you have concerns about keeping the tub hygienic, you can always clean it afterward with bleach.
For more information on showering with an ostomy, I’ve put together an article and video HERE.
What about sex?
An ostomy shouldn’t cause any problems with getting intimate, however, there may be some challenges if your surgery requires your rectum to be removed.
For men, there is a small chance of becoming impotent, however, you should discuss this with your surgeon if there are any concerns.
Some women may have discomfort after surgery, especially when their rectum and colon has been removed, but most women will say this goes away after several months.
Some ostomates feel more comfortable when getting close to their partner by wearing an ostomy wrap or a smaller pouch. There is no right or wrong way, so do what makes you and your partner comfortable.
Showering, emptying your pouch and wearing something that makes you feel comfortable (there are a LOT of sexy lingerie for lady ostomates) will make sexy time less stressful.
A full guide to sex and intimacy with an ostomy can be found HERE.
How often should I change my pouch?
This might be something to ask your stoma nurse, as each of us gets different mileage out of our supplies. I change my appliance every three days, as I find that to be a good balance between skin health and cost. Some ostomates change their pouch every day and others can go a week before changing theirs. Colostomates can generally extend their wear time more than urostomates or ileostomates, as aggressive, liquid output will shorten wear time.
Many stoma nurses will recommend changing your appliance before or at the first sign of burning and tingling under the wafer. I try to do it before I feel this tingling since it’s often a sign that your skin is being damaged by your output.
I’ve put together information to help you determine when the right time to change your appliance is. Check it out HERE.
Can you reuse an ostomy bag?
I know some people will wash and dry their 2-pc, drainable bags in order to save money, but most bags are discarded and replaced with each wafer change (or sooner).
Because filters on these bags tend to clog quickly, replacing your pouch will guarantee a “fresh” filter.
How should I empty my pouch?
This is a matter of personal preference. When I first got my ostomy, I would sit on the toilet and empty my pouch between my legs. However, while in recovery from my rectum removal, I would kneel at the toilet and empty that way (since I couldn’t really sit on the toilet with a VAC unit attached at to my butt) and I’ve since been doing that. Some people will stand and empty their pouch (with good aim, of course!), and others will sit on the toilet facing the front of the toilet.
It’s a good idea to place some toilet paper down on top of the toilet water to prevent splashing. Some people will rinse their pouch out with a water bottle; I find that this works great for thick output that doesn’t come out “clean”, but it’s not necessary to do and it can impact wear time.
I clean the pouch outlet (on my drainable pouch) using toilet paper, then I roll up some toilet paper and clean the first 3-4″ inside the outlet too. I find this keeps the outlet completely clean and I’ve never experienced odor or stool from a closed outlet.
For more information on how to empty your bag, have a look at this article/video.
Will people notice my pouch?
Some appliances stick out more than others, especially when they are full, but it’s usually pretty easy to disguise your appliance. There are many clothing options (especially for women), as well as ostomy wraps, the Stealth Belt and stoma guards which allow you to wear your normal clothes without a problem. Some ostomates prefer to wear loose-fitting clothes, although this usually isn’t necessary, and others like to wear patterned clothes to camouflage the pouch.
Will I have to change my medication?
If you have an ileostomy or a short bowel, some time-release and coated pills may not absorb properly, so you should make sure to let your doctor know that you have an ostomy so they can give you a more appropriate form of medication. This can also apply to vitamins too, and if you see your multi-vitamin come out of your pouch, you may want to change to a liquid type or capsule. Always discuss medication with your doctor or pharmacist.
More info on medication and your ostomy can be found in THIS article.
Should I worry about my salt intake?
Because electrolytes, including sodium, is absorbed mostly through the colon, ileostomates lose more sodium than most people, so they are often recommended to keep their salt intake higher. This is something you should discuss with your surgeon and have blood/urine tests to make sure your sodium levels are normal. If you have problems like high blood pressure, then your doctor will give you more specific recommendations.
Keep in mind that sodium doesn’t have to be table salt. You can get sodium from things like baking soda, MSG or vegetables (especially celery). I personally don’t limit my salt intake, but I also avoid a lot of processed foods, which normally have a lot of sodium in them, so my intake isn’t as high as most Americans or Japanese.
I have IBD, should I get an ostomy?
Not everyone with IBD will require an ostomy, but it’s usually an option reserved after all other treatment options have been used. Deciding to get an ostomy is something that you, your GI and a surgeon will need to discuss. It’s not a decision that can be made easily, but for many people, it’s the only option they have left for finding relief from their illness.
Does an ostomy cure Ulcerative Colitis?
This is a question that is often asked around in the IBD community. I think it’s important to define what “cure” means to you. Since Ulcerative Colitis (and Crohn’s Colitis) affects the colon, it would make sense that removing the colon will “cure” the illness, but the reality is, many people with UC and Crohn’s Colitis (like me) will still have signs of illness even after their ostomy has been put in place. These are usually called “extraintestinal manifestations“, and can persist even when there’s no inflammation in the gut. In the case of Crohn’s disease, removing one part of the gut doesn’t guarantee that the illness won’t set up shop in another part. There are a lot of variables that would increase the chances of your disease recurring, and your surgeon would be able to give you a more precise figure.
When you have your colon removed, do you feel lighter? Are your insides jiggly?
You’d probably expect to feel lighter or feel things move around with all the extra space, but I don’t think many ostomates notice anything different after they lose their colon.
I’m curious about vegan ostomy products. Is there any way for me to sample any?
First, let me say THANK YOU for wanting to try ostomy products that are free of animal ingredients!
I’ve put together a list of ostomy products that I’ve confirmed to either vegan or non-vegan. You can search the list by brand, product code or type and you can sort the list however you like. I’d suggest contacting the manufacturer to see if they offer free samples (most do).
You can find the list of vegan/non-vegan ostomy products HERE.
Hey, I saw you wear your bag sideways. What the deal with that?
Ha! Glad you asked! I normally wear my pouch hanging down vertically, but there are some support belts that allow me to wear it horizontally. Wearing it on its side can be quite comfortable, but it also allows me to tuck my shirt into my pants if I like.
The drawback to wearing your bag like this, however, can include shorter filter life, the possibility of shorter wear time (hasn’t happened to me), and needing to empty the bag more often.
Is it normal to see chunks of food come through the stoma? I see it in my bag
Because not all foods digest completely, it’s normal to see bits of it in your bag. Foods like corn, tomatoes, carrots, and mushrooms may all leave identifiable bits on the way out.
Unless these are causing you problems, like blockages, there’s usually no reason to be concerned. You could also try to be more mindful when chewing your meals, but don’t expect 100% of your food to be digested completely.
Can you still get pregnant with an ostomy?
Yes, and I know of quite a few women who have!
But it should be noted that this depends on why you’ve had surgery and what other complications you’re dealing with. One study that looked at over 70 women with IBD reported that “fertility was significantly reduced after surgery since only 37% (10/27) of the women who attempted to become pregnant succeeded within 5 years follow-up. The corresponding figure before surgery was 72% (39/54).” (SOURCE)
The same study also noted that “those who conceived went through pregnancy and parturition without any incident, 6 of 21 delivered by cesarean incision”, but some women that I know have had issues late-term with blockages.
It’s best to work with your OBGYN and stoma nurse if you decide to get pregnant.
I saw my stoma move! Is this normal?
Yes, it can be!
There are several reasons why a stoma may move or change size and shape. The most common is peristalsis – the natural, wave-like contractions of your intestinal muscles.
For more reasons, please refer to THIS article.
Will I still need to be scoped after I get an ostomy?
Even if you have a stoma, your doctor may still ask that you get routine colonoscopies (if you have a colostomy) or an ileoscopy (if you have an ileostomy). The frequency can depend on your age, reason for needing an ostomy, family history, and so on.
If you are interested in some of the tips I’ve put together for having an ileoscopy, please check out THIS article. These tips may also be helpful for colostomates, although your doctor should also be able to give you prep instructions.
Updated: Oct 31, 2019