Ostomates shouldn’t be afraid to talk about sex. So let’s start.

Introduction

An important, yet often taboo subject, is the topic of sex and intimacy after ostomy surgery.

Part of the problem is that people with an ostomy are often too embarrassed to talk about it, so it’s never discussed. Another part is that doctors and nurses don’t tend to bring it up (short appointment times are often to blame).

But even when it is discussed, there are many variables that change a person’s experience, and those variables can be challenging to discuss all at once.

In this article, I will try to cover areas that I believe should be discussed more openly, as well as areas where patients can take charge.

But I won’t pretend for a minute that this article covers all possible points on the matter. My experience of being a straight male with an ileostomy limits my knowledge considerably when it comes to female issues or issues faced by LGBT ostomates.

I would also like to point out that research on this topic is quite limited and seems to focus on older colostomy and urostomy patients who were diagnosed with cancer, and not younger IBD patients who’ve undergone ileostomy surgery.

This guide should be suitable for ileostomates, colostomates, and urostomates with a few minor differences between each type of ostomy.

I do plan to update this article as new studies come out, as I talk to more ostomates, and as more people are willing to share their experiences.

Disclaimer

This article is about sex and intimacy. I don’t believe in censorship when it comes to providing information that could help another person, so if this topic makes you uncomfortable then you might want to check out my other articles instead.

For those who are curious – this article is about sex and intimacy when you have a stoma – not sex with a stoma. I don’t think any doctor would say that it’s safe to have sex with a stoma, so don’t do it.

Video

This is a long video (over 40 minutes), but well worth the watch. It includes a Q&A session I had with two ladies who’ve had/have an ostomy, and they shed light on some important aspects from a female’s perspective.

If you’d like to know more about the ladies in that video, check out their websites:

Sara Ringer – Inflamed and Untamed

Christy Stone – Crohnie Bologna IBD

Megan “The Front Butt YouTuber” – TheFrontButtYouTuber YouTube channel (she recorded the interview footage from the front angle)

When’s the right time?

Talking about intimacy and actually getting down to the act may take place at very different times.

Intimacy, like getting close, kissing, cuddling, and touching can happen any time you’re ready.

Some ostomates wait until they’re fully recovered from surgery before they consider having sex, while others (carefully) decide to go for it within weeks after their surgery. Remember, not all of us had key-hole surgery that went perfectly smooth – large incisions, multiple incisions, complications from surgery can delay how quickly we can physically heal.

My advice would be to discuss this with your surgeon first to make sure that you are healed enough to safely have sex.

Once you get the OK from your doc, and you feel comfortable, you can open up the lines of communication with your partner.

Talking to your partner

Discussing sex after surgery is something that a lot of new ostomates fear. We worry about being rejected, not looking good enough, not being able to perform, and other fears that are understandable.

If you are in a stable, loving, long-term relationship, then you’ll likely have a very understanding and supportive partner who won’t be bothered by your appliance. Of course, you should still have an open and honest conversation with them to see if they have any concerns. More often than not, they’re looking for reassurance that they won’t break you in half (remind your partner that you don’t all of a sudden turn to glass when you have an ostomy).

I can’t stress that point enough: Your partner will likely be more concerned about hurting you or your stoma rather than the fact that you have one. Sometimes, it may help to have them at your follow-up appointment so the doctor can explain that you won’t be putting your partner’s stoma at risk by having sex.

For people who are dating, have just started a new relationship, or are single and looking, things may not be that simple.

Depending on where you’re at in your relationship, your partner may already know about your ostomy and all the things you’re able to do.

Having talked to several ostomates about when someone should tell a new partner about their ostomy, there is no real consensus on when you should do it.

Some say that by telling a new partner early on, you’ll be able to “weed out” any bad or unsupportive people quickly while at the same time finding partners who accept you as you are – all of you!

Most of your partners likely won’t know what an ostomy or stoma is, so they might let their imagination run wild unless you clarify what an ostomy appliance is and how it works. Do this at your own comfort level – I don’t expect anyone to be sharing their entire medical history with a new partner, so share as much (or as little) as you feel necessary.

While you are talking about this, be positive and confident about it! If you make it sound like an ostomy is gross and you hate yourself for it, that’s the baseline you’ve set for your partner. Please don’t do that to yourself.

If you aren’t comfortable or confident about having a stoma, hold off the conversation until you are.

My guide on building confidence with an ostomy can be found HERE.

Emotional and Psychological Challenges

How We View Ourselves

Our body, and how it looks, is never good enough. This is an unfortunate message that many of us either tell ourselves or we allow society to tell us through magazines, advertisements, social media, and toxic relationships. (TIP: It’s all bullshit).

How we view our bodies, our scars and our stoma can either make or break our relationship with ourselves and/or our partners.

A therapist may be able to work with you to dispel negative feelings you might be having towards your surgery or self-image. A support group with other patients might do the same thing, and you may find more inspiration from people who’ve gone through what you’re going through.

Check out the #getyourbellyout campaign if you’re looking for a place to start online.

The fact is, we’ve gone through something pretty traumatic to end up with an ostomy. We need to use that as a platform and recognize that we’ve survived something big!

Some people look at their ostomy or surgical scars as badges of honor. I don’t expect everyone to feel that way, but there’s no benefit in viewing those things as failures.

Those who can build enough confidence and self-esteem have a far better experience with their ostomy.

I do need to mention that chronic illness can also play a huge part in the way we feel about intimacy and sex. Depression, anxiety, loss of interest in sex, negative feelings about our body are all too common in people with a long-term illness, including IBD.

Building Self-Esteem

Confidence and self-esteem are often linked, and that’s partly because they tend to feed off each other.

While self-confidence involves how you feel about your abilities, self-esteem is more about how you value yourself.

It’s important to have a strong foundation for both, so taking some time to work on both your confidence and self-esteem will give you the greatest chance to be happy and successful in your relationships.

As I’ve previously written about building confidence HERE, I’ll tackle some tips for building self-esteem in this section.

Stay away from comparisons. Many of us who’ve had surgery as teens or adults probably look back and say “I was able to do so much before…” or “All my friends are healthy…”.

Stop believing that your surgery turned you into a terrible person. Surgery only changed the way you go to the bathroom.

Be grateful. I always remind myself that had I gotten sick 100 years ago, I’d be dead. We are incredibly lucky to be here! (More on this in my WORD SWAP article)

article) Surround yourself with people who love you / Get rid of the ones who don’t. Toxic relationships will only bring you down so focus on the positive ones.

Don’t take rejection so personally. Sometimes it is just them! Don’t take rejections as a sign that you aren’t good enough.

Learn to love yourself. Probably the most important ingredient in all of this is learning to self-love.

Physical Challenges

Both men and women may experience physical sexual problems as a result of surgery.

This happens a lot when the rectum or areas around the bladder are involved since there are many nerves in those areas.

Your surgeon should explain these risks during a pre-op appointment – if they don’t then you need to ask.

For men, trouble getting or maintaining an erection, retrograde ejaculation (when semen goes into the bladder and not out the tip of the penis), and the inability to have an orgasm/weak orgasm seem to be the most common issues.

For women, pain during sex, vaginal dryness, trouble achieving orgasm, are more common issues.

It’s important to remember that sometimes it takes a little time for the full function to return as nerves and tissue heals. I’ve read that in many cases doctors will tell patients that it may take up to two years after surgery to regain full function of our sex organs.

Some of these challenges may need some form of therapy, including medication, hormone therapy, or implants. I would highly suggest speaking to your doctor if you’d had any trouble like this after surgery.

Risk of Surgical Complications

People with an ostomy have an ostomy for a variety of reasons (cancer, IBD, accidents, etc.). This, unfortunately, means that each of our surgeries will be a little different, and other therapies used (like radiation or chemo) may also have an influence on certain complications.

These can all impact the risk factor for surgical complications:

Age.

The use of certain medications.

Weight.

Nutritional status.

The skill your surgeon.

Smoking.

Type of surgery.

Radiation/Chemotherapy.

One study I came across, which dealt with colostomies specifically, estimated that approx. 50% of the patients in their study reported “sexual disturbances”.

In this very small study group (only 21 patients in total), they found that some patients simply lost interest in sex, others had pain during sex (women), one man experienced premature ejaculation, and another suffered from impotence.

Any time the rectum is involved, the risks seem to be higher. In another study I found, which looked at men who had rectal surgery due to cancer, it found erectile dysfunction happened to 77% of men who had an ostomy as a result of surgery. Men who received radiation therapy had a rate of nearly 90%.

I honestly feel like these rates seem incredibly high, but keep in mind that many of these studies focus on older populations who have their ostomy due to cancer.

Notes for J-Pouch Surgery

For those of you with a temporary ostomy who plan to get a j-pouch, there’s some data on sexual function following the surgery. In a 2016 study, it was found that “no significant correlation between sexual function and pouch function in men. In women, we found a significant correlation between poor pouch function and impaired sexual function.” SOURCE This is good news for men, but women who are planning to have their ostomy reversed for a j-pouch may want to discuss sexual function and the risks of this surgery. Interestingly enough, another study looked at the differences between hand sewn vs. stapled j-pouches and found that “…there was a trend for better female fertility and male erectile function after hand sewn IPAA” SOURCE. Just something to keep in mind.

Impotence

There is a risk of impotence after surgery, especially in surgeries related to the bladder/rectum/prostate.

It can take a while for nerves to be healed (up to two years in many cases) and age plays a big role in the risk of impotence after surgery.

Therapy for impotence can include oral medication, injectables, implants, and Vacuum Erection Devices (a.k.a. VED or “penis pumps”).

Pain during intercourse (female)

Pain during intercourse can be a problem for women who’ve had ostomy surgery. The type of surgery can influence the risk factors, but other variables such as age also play a role.

Vaginal dryness, changes inside the vagina, or scarring can all contribute to pain during sex.

From what I’ve read, pain tends to go away after some time, but some women may find benefit by using a vaginal dilator, doing pelvic floor exercises (“kegel exercises”), or change their position during sex to find one that’s more comfortable.

Any pain during sex should be discussed with your healthcare provider.

Vaginal Dryness

High on the list of problems for female ostomates is vaginal dryness.

This can be caused by damaged nerves, as well as medical treatments like chemo and radiation (something you may be going through if your ostomy was due to cancer).

The most common way to remedy this is to use lubrication, although estrogen therapy may also be used.

If you’ve never used lube before, I would suggest buying a few different types to see which one works best for you.

There are three main types of lubricants:

Water-based lubricants are the most common and they’re safe to use with condoms. K-Y is a very popular brand (and you may even see it being used in your doctor’s office for exams), but there are other brands out that that work better for sex (not to mention you can get flavored varieties, too). Some water-based lube needs to be reapplied quite often, so sample more than one of these if that happens.

Oil-based lubricants (including mineral oil, baby oil, vaseline, etc.) shouldn’t be used with latex condoms and can be messy.

Silicone lubricants are generally safe to use with condoms and can last a lot longer than water-based lubricants can – they can be more expensive, though.

Note: Not all lubes are compatible with sex toys.

“The Deed”

Something that most articles about sex as an ostomate fail to discuss is the actual part about having sex. So let’s get to it!

Before You Begin

Some common sense things to keep in mind before you engage in sexual activity include:

Empty your bag / change your bag.

If you wear a clear bag, consider using a pouch cover or ostomy garment to cover it up.

A shower or bath can make you feel clean and fresh.

Try to avoid large meals leading up to sex.

Some people use products like Imodium to slow down their output.

Communicate with your partner and let them know what you may or may not be comfortable doing.

Gas happens. Your stoma may “fart” and make some noise during sexual activity. Either ignore it or laugh about it (you’ll be too enthralled in love-making to worry about it anyway).

For someone with an ostomy, being spontaneous sex may not always be convenient. There’s absolutely nothing wrong with excusing yourself to use the bathroom quickly before returning to your partner. Many people already do this to “freshen up”, pee, brush their teeth, etc.

Foreplay

Most people (ok, most women) say that foreplay happens well before hitting the sheets. There’s a lot of truth to this whether you want to believe it or not.

If you aren’t “feeling it” in your mind, then you’ll have a more difficult time in bed.

Good communication and a loving relationship will foster positive feelings and build up sexual desire over the course of the day.

Oral Sex

Both men and women with ostomies can still enjoy giving and receiving oral sex, but you may find that you’re extra shy or apprehensive about having your partner’s head so close to your bag.

I personally like to keep my bag out of the way (by wearing it horizontally and in a support belt) so it’s not going to interfere with receiving oral sex. Some ostomates just leave their bag hanging.

If leaving your bag out makes you uneasy or unable to focus on enjoying your partner, use one the options listed in the Clothing and Ostomy Accessories section to keep it out of sight and out of mind.

Intercourse

Sex should be enjoyed, so it’s really important that you and your partner are both on the same page when it comes to having intercourse for the first time after surgery.

If you’re a female and you’ve noticed vaginal dryness or pain, let your partner know so they can help you. It may require changing positions or some extra lube, but either way, this should be vocalized so you aren’t left feeling frustrated and alone.

And speaking of positions – there is no right or wrong position when you’re getting back into sex after your surgery (or any time, for that matter!). You may want to take it slow and go for easier positions before busting out Kama Sutra, however.

Don’t be discouraged if you find that your favorite positions are uncomfortable or painful – your body may simply need to adjust to the surgery, so try another position for the time being (and don’t forget the lube!).

There’s little to no reason to be worried about your bag/stoma pressing up against your partner. Some ostomates may feel self-conscious and cover their appliance with a hand, but this is both unnecessary and may cause your partner to feel as if they’re doing something wrong. Unless sex involves getting punched in the gut, ease up a little.

Masturbation

Definitely not a topic I’ve ever seen discussed openly in the ostomy community, but one that likely has questions coming from both genders.

Masturbation can be a good way to not only see if everything works “down there” but also to know what your limitations might be.

Depending on how you let your bag hang, and quite frankly, which hand you prefer using, you might need to adjust things a little.

As with intercourse, you may find that wearing a smaller bag, wearing your bag sideways (with a support garment), or wearing a wrap will help to keep things easily accessible.

Ladies, if you haven’t had sex since your surgery then a dildo or other insertable toys may help you know whether there will be any pain during intercourse.

Guys, especially men who’ve been experiencing trouble with getting/maintaining an erection following surgery, the “use it or lose it” rule may apply to your penis – at least according to THIS Harvard Medical School Bulletin) discussing erectile function after prostate surgery. The American Cancer Society also suggests that “…It’s best if you can have an erection 2 to 3 times a week. This will help keep the tissue in your penis healthy.” (SOURCE). This was one step in their explanation about how “penile rehabilitation” works.

Sex Toys

Sex toys like traditional dildos, “pocket pussy’s”, vibrators, and similar items shouldn’t be a problem to use and enjoy.

Women who haven’t had sex or used a toy since surgery may want to take it slow in case they experience any pain or discomfort.

Roleplay and/or fetish wear like harnesses, bondage restraints, and corsets may come across the abdomen. I would suggest browsing online to find styles that won’t interfere with your ostomy appliance.

Strap on dildos may pose a challenge depending on how the harness comes across your stomach/lower abdomen. In researching for this article, I did come across many styles that I think would work perfectly fine for ostomates (and several that would be problematic).

Clothing and Bag Options

One way to feel sexy (or studly!) is with lingerie or support garments.

Keep in mind that these are options, not necessities. Some ostomates are perfectly comfortable to forgo these accessories for a number of reasons, so don’t feel as if you need to use them to have great sex.

Ostomy Pouch Covers

Ostomy pouch covers can be a great way to hide the contents of your bag, but they offer no added support.

This may not be a problem if you’re using a small bag and have an appropriately sized cover, but large bags + large covers can mean that things will be swinging around (probably too much).

Wraps/Belly Bands

Wraps and belly bands offer a basic level of support and concealment for your bag.

I find that I’m able to fold the wrap so that it’s not as long, and it keeps my bag from swinging around.

Note: Wraps designed for ostomates will have one or more inner pockets to place your bag. This prevents the bottom of the bag from showing, which can happen if you’re using a regular belly band or maternity wrap.

Support Garments

These come in different styles and offer more security over wraps.

I’m a big fan of wearing my appliance horizontally, and certain support garments like the StealthBelt or ComfortBelt can really be a game changer in the bedroom. These horizontal support garments keep your bag out of the way and prevent it from swinging around.

Undergarments / Lingerie

Ladies, while there’s no problem in wearing whatever lingerie you like, know that there are a few brands who make lingerie and undergarments specifically for ostomates. You can find a list of them HERE.

These offer better support for your bag vs traditional undergarments but look just as sexy as anything you’d find at the mall. Keep in mind that you’d likely be taking these off before you start having sex, so keep that in mind if you’re looking for continued support/concealment of your appliance.

Crotchless panties with a higher waist may also be an option if you feel more comfortable keeping something on for support/concealment without restricting your partner’s access.

Check out part 3 of my “ Dressing With an Ostomy: A Guide for Ladies ” to see examples of undergarments and lingerie.

Small ostomy bags and ostomy “caps”

If you’re wearing a large, 12″ long ostomy bag, it could be a little unwieldy when you’re trying to focus on your partner.

Good news, though. Most manufacturers will have mini or small bags that are 7″ or smaller and work well for intimacy.

If you’ve got a two-piece bag, then you can remove your day bag and swap it for a smaller size before making love.

And for those who have a colostomy (especially if you irrigate), you can even find “stoma caps”, which are tiny (like 3″). A word of caution when using a stoma cap: only do so if you know that you won’t have any output. These are not ideal for ileostomates as they can fill up very quickly, but a colostomate who irrigates (or someone with a continent ileostomy) may find this to be a better option than anything else on the list.

For a more in-depth look at stoma caps, check out THIS article.

LGBT Specific

I would love to offer more help to the LGBT ostomate community. If you would like to share your experience or advice, please CONTACT ME.

From the (unfortunately) very limited research on sexuality as it relates to LGBT ostomates, I’ve found that we have the same concerns about body image, sexual performance, self-esteem, etc.

But in addition to those concerns, LGBT patients may not share their sexual orientation with their healthcare provider, which makes it even more difficult to get the right support system in place.

If you feel more comfortable seeking support online, you should be able to find other ostomates in the LGBT community through various ostomy/cancer/IBD forums.

Of special concern is intimacy for gay men with an ostomy who may not have an anus or rectum (common for people with permanent ostomies). This poses an exceptionally difficult challenge, and while some men may be able to connect with their partner through other means of sexual contact (like oral sex or hand jobs), sex therapy or counseling should be something to consider.

Lesbians who enjoy using strap on toys should be able to find styles that do not interfere with their ostomy appliance.

Please, please, if you are LGBT talk to a stoma nurse that you trust about issues regarding sex and intimacy. They may be able to point you to resources that I’m not even aware of.

Resources

Notes

I came across an interesting study involving male veterans with an ostomy. The study compared the “HR-QOL” (health-related quality of life) among the men who continued to have sex after their surgery to those who did not.

They found that “Compared with veterans with ostomies who did not resume sexual activity after surgery, those who were sexually active reported a higher total HR-QOL score and higher scores on all 4 modified City of Hope Quality of Life-Ostomy dimensions (psychological, social, physical, and spiritual well-being). Veterans with ostomies who had resumed sexual activity after their ostomy also reported that their ostomy had caused significantly less interference with social activities, less isolation, less interference with their personal relationships, and less interference with their ability to be intimate. These men also reported less difficulty adjusting to the ostomy.”

Unfortunately, the same study also found that veterans with ostomies had less sex after their surgery compared to a control group who did not have stoma surgery.

To me, this illustrates exactly why we should be proactive in talking about this with our partners, nurses, doctors, and support groups.

Sources