Ostomy Questions?

There are a lot of questions about ostomies when you first start to look into it. The first is the most obvious.

What is an ostomy?

An ostomy is a connection between an internal system, like your digestive or urinary tract, and the skin. Some provide a new way for the body to pass waste. Others create new internal structures using existing tissues that act as reservoirs for waste. Still others like gastrostomy and jejunostomy give people a new way to take in nourishment.

What are the most common types of ostomies?

The most common types of ostomies are:

Urostomies: This is when a patient’s bladder is removed, and their ureters are rerouted to drain into a piece of the small intestine that’s been connected to the skin.

Colostomies/ileostomies: These divert stool from the small/large intestine.

Where is an ostomy placed?

An ostomy could be located on one of a few areas along the large intestine. It could be on the right or the left of the body or even what they call “transverse”, which means the part of the intestine that stretches across the abdomen horizontally

Why do people get ostomies?

Everything we eat or drink has to come out as waste. Unfortunately for various reasons that pipeline may be blocked or damaged which means that the end of the system has to be rerouted. There are all kinds of reasons for this. For me it was cancer. Because of where the tumor was and the damage necessary to remove it I had to have an ostomy.

An ostomy may be necessary due to birth defects, cancer, inflammatory bowel disease, diverticulitis, incontinence and many other medical conditions. They are also necessary in cases of severe abdominal or pelvic trauma resulting from accidents or from injuries sustained during military service.

Ostomy or continent diversion surgery can occur at any age and does not lower life expectancy but is the start of a “new normal” life.

Are ostomies permanent?

No not all ostomies are permanent. Mine is but many people have temporary ones in place so that the parts that need to heal can do so. After that part is healed the ostomy can be reversed. However You can’t remove an anus and connect the colon to anything, so the ostomy needs to be permanent if the anus is gone.

Which cancers patients need ostomies

Initially, I assumed only patients like me with colorectal cancer had to worry about this but I have learned that is not true. Some people with head or neck cancer that causes trouble swallowing may also have to have an ostomy as do genitourinary cancer patients.

How often do you need to replace or empty a bag

This is highly dependent on the person and on how that person is living their life. It also depends on the type of bags you use. I use disposable bags. This means I do not drain the bag and reuse it. I simply detach the bag and put on a brand new one.

That being said, the average number of bag changes is about two a week, or once every three or four days. Every patient is different, of course, but most people drain theirs two or three times a day

Will everybody know I have an ostomy

This was a HUGE fear of mine. To be honest the answer is not a straight yes or no. You may find yourself adjusting your wardrobe choices. I am a 52-year-old woman and my days of having a cute little flat belly are 25 years and 2 kids in the past. So I am not running around in a half shirt with a belly button ring. So I can hide it a bit better. I wear my shirts a little looser and I find patterns or different textures tend to hide any outlines of the bag that may otherwise be noticeable.

I of course thought everyone could tell but I have never had anyone ever notice. And that part is important. There are about 100,000 operations a year in the US that result in a colostomy or ileostomy. Anywhere from 725,000 to 1 million people have one at any given time just here in the US. Now ask yourself have you ever noticed one? The chances you know or have met someone with one is very high but more than likely you never knew it.

There are some different wraps you can wear that will help hold everything in a bit better. I have worn them on occasion when I wanted to wear something a bit closer. Here is a link to what I am talking about. They make various products for men and women.

Do the bags ever leak

Yes, they can but in general, they do not. The technology for the supplies is pretty mature so they work quite well. You do have to be aware of your body. As you lose or gain weight the appliances and bags may need to change so they provide the best fit. But once you have that part dialed in you should expect very few incidences of leakage.

What do I need to do for maintenance

There is nothing major you have to do other than inspect the area as you would any other part of your body. The good news is that it’s right up front. You can easily inspect it.

You want to look for things like:

• the skin around the ostomy bag looks normal,  
• there’s no burning sensation beneath the appliance, and  
• the color of the stoma itself is still bright red or pink.

Can I still go swimming or do other exercises with an ostomy

Yes, I have not been swimming but that’s just because I haven’t yet. But you can go swimming, you can exercise, and pretty much participate in all the things you did before. So far I have not found anything I was doing before that I can’t do now. Obviously, something like playing tackle football or something that may result in blows to the body would be problematic but for the average person, most activities are still all on the table.

Can I still have sex?

Oh boy, This is the personal side of life right? But it is part of My Ostomy Life and why I wanted to share this with people. So yes you can have sex in all the ways you did before.

However, beyond the medical ability, there is some personal prep you are going to want to do. Keep extra bags on hand. Empty the one you are currently using or if like me you use disposable ones then change it. There are also sexy wraps and underwear products you may want to throw on to somewhat hide the appliances if you feel a little self-conscious.

If you are married like I am then you do not need to explain to your partner what is going on and they will know to be careful around that area. However, if you are dating it’s probably a good conversation to have prior. When you do that is totally up to you. Could be early on in the relationship or mere moments before your clothes come off. But recognize some people may be thrown off by it just because it is different and unexpected. But again it should not stop you from having a full and exciting sex life.

One caveat to this. Anal sex is not possible for people that have had the anus removed because of whatever issue lead them to become an ostomate. That is sort of obvious but recognize that it’s a part of human sexuality and unfortunately for some, they lose that ability.

**This should go without saying but as soon as you say that someone does something weird. NEVER put anything in your ostomy. I’m not kink shaming you. You live your life, but the ostomy is off-limits. Enough said? It should be.

Can I take a shower?

Yes, you can. You can shower or take a bath. You can leave the bag on or off. It’s up to you. However, I tend to take everything off at least once a week so I can get fully clean and clean the area around my stoma. But other days I leave the bag on for a quick shower. Keep in mind you have may have what we politely call “output” during bathing. So I find a shower is better than a bath if you are going to take off the bag. But either way if fine from a medical perspective.

One thing to remember is you want the appliance to stick to your skin so after bathing be careful not to put any oil or lotion where the adhesive will go. That will reduce the adhesion and you don’t want that.

Ok, What if I have gas?

You will still produce gas the same way you did before. When is how much is highly dependent on your diet and the only difference is your lack of ability to hold it in. The gas will automatically come out of your body and into the bag. Some bags have release valves, some have charcoal filters to disguise any odors. Some people may release the gas in the bathroom by “burping” their bags.

In general, I know what foods will cause gas so I am a bit more aware of what I am going to eat before going out just so I can minimize it a bit. The sound is usually not much different than your stomach gurgling and I have yet to have anyone notice.

Where can I get supplies?

Unfortunately, ostomy supplies are not generally found in a local Walgreens or CVS. So you will have to order them. Most insurances cover them but if you do not have insurance or you do not have what you are looking for then you can usually order online from places like Amazon. Check out the supplies page for my list of products I use.

Do you have any other questions?

Im sure there are plenty of questions I did not get to. If you have any leave a message below and I will try to get you the best answer I can.

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I am not a doctor. Anything I say should not be taken as medical advice but rather just my own observation and the information I have found through my experience and through talking with others. If you ever find information you know to be false please let me know. I want to be sure we all have the best experience possible. Please seek medical advice from a qualified medical profession.

My Ostomy Life is reader-supported. When you buy through one of our links I may earn a commission at no cost to you. It helps me afford supplies.