Out of the Bag: Sex with an Ostomy

stephanie hughes out of the bag colostomy ileostomy crohn's disease ulcerative colitis inflammatory bowel disease ibd ostomy blog stolen colon ileostomy colostomy urostomy

I have debated for a while about writing a post on sex. I know my parents and my parents-in-law and even my grandparents read my blog (I’m giving you fair warning that this is one post you can skip!), but I know that sex is an important subject when it comes to ostomies. It’s probably one of the first questions you have when you know you are going to have surgery. I know it was for me. You wonder not only about the “how is this going to work?” but also the “how am I going to feel?” It’s also a hard question to bring up for many people, so I figure… let’s talk about it! And we’ll talk about it online so you don’t actually have to bring yourself to ask about it.

lingerie-ostomyLike I said, one of my first questions once I decided to go through with the surgery was, “how is this going to affect my sex life?” Thankfully I had a surgeon who this wasn’t his first go-round and he knew it was probably a question I had so he brought it up without making me have to. He told me that it would not change anything majorly, but it would be an adjustment, especially after getting the rectum removed. The rectum is right up against the vaginal canal and provides support, so no longer having it made things feel different. Not bad different, just… different.

Let me first go back to before my surgery. Sex has always been a little difficult for me, as I’m sure it is for many people living with Crohn’s disease or ulcerative colitis. There are so many concerns when living with a bowel disease. I was worn out easily, so I wasn’t always up for it. My stomach might be hurting and I’d be concerned about upsetting it even more. And then there is always the worry that when having sex, something might sneak out. You know… from behind. That was always a major worry. And it led to me tensing up a lot and trying to make sure that I was holding everything in, which didn’t always lead to a pleasant experience. But I love my husband and I know that sex is an important part of a healthy, long-term relationship. Still, sex, a lot of the time, became more work than fun.

So I was nervous giving it another go after my surgery. I knew I would no longer have to worry about the whole holding-it-in thing, but other concerns come along with it. Will I feel sexy? Will the bag get in the way? Will it hurt?

It was maybe 4-6 weeks after my surgery that we decided to give it a try. ( I did have a completely laparoscopic surgery, so if you had an open surgery, it could be a different experience.) If I’m going to be honest here, it was difficult at first. Yes, it hurt. Yes, it felt different. No, it was not fun. I am very glad that I have an understanding husband who is willing to be patient and let me take it at my pace. I would say it took at least about a month to start feeling comfortable again. So don’t get discouraged if it’s not what you think it will be right off the bat. Give it time. Take it slow.

Unfortunately, when I had my second surgery, we had to start all over again… again. It was my second one that removed the rectum so it felt even stranger than before. Plus, I still had a wound that was very close by that was trying to heal up and forced us to take things even slower. It was probably closer to six months until I felt like we were really back to the way things should be.

Right after my surgery, I was scared that I would no longer feel sexy and that my husband wouldn’t look at me the same way. Let me just say once and for all, I was wrong. It wasn’t immediate, but once I knew how much better I was feeling and got used to the idea of having an ostomy and a bag, I felt even sexier. I wasn’t worried about what might happen during sex and I was free to enjoy it the way you’re supposed to.

The bag does get in the way sometimes, though, so I wear one of my wraps to keep it in place. I also don’t have to worry about it getting pulled on it in any way. (These are the basic ones that I use from Target, but Awestomy and OstomySecrets have some fancier ones.) The wrap also helps me to not even consider my bag during those times.

I know that I have a different story from some in that I was already married when I got an ostomy and my husband was there to help me make the decision and to actually go through all of it with me. But for those who are not in the same situation, I would encourage you to not let your ostomy hold you back. I believe you will find the other person won’t be bothered by it and will more than likely be supportive. I mean, it’s sex. Why would you let something silly like a bag on someone’s stomach get in the way of that?

But in the scenario that someone does take an issue with it, then be honest with yourself, is that really somebody you want to continue a relationship with? If they have a problem with an ostomy bag, then they probably have other issues, as well. It’s their problem. Not yours.

In the end, even though there was an adjustment period and some initial concerns, I have found that sex can be just as, if not even more, satisfying and enjoyable with an ostomy than without (especially if you are dealing with some of the same issues I was beforehand). Don’t let it hold you back. You are still a beautiful/handsome/sexy person with or without a colon and with or without an ostomy bag. So enjoy it!

Have you found a difference in your sex life since getting an ostomy? Have you had any challenges? Have you been able to overcome them? I know this is entirely from the woman’s perspective. Are there any men willing to share their own experience?

40 thoughts on “Out of the Bag: Sex with an Ostomy

  1. Vegan Ostomy

    Wonderful post!

    I guess I’ll be the first guy to share my experience…

    After suffering with pains and bowel urgency from Crohn’s for over 5 years, my ostomy gave me a second chance, and things have been great for the past 6 months. The post-op abdominal pains took some getting use to (my surgery was intended to be laparoscopic, but ended up being open), so I had a slower recovery, but when it comes to sex, nothing really slows me down and we tried probably after about 4 weeks as my abdominal incision had some challenges that we didn’t want to further complicate.

    I had my rectum removed 3 months ago. We tried it while I was still tethered to a vac unit and that was – interesting – but it worked with some changes to our position. Now that I’m almost fully healed on my bottom end, things are much easier and worry free. I also use a maternity-style wrap or a stealth belt in order to keep the pouch out of the way and there have been no trouble’s with that. The stress from not having the same “crohn’s worries” makes sex way more pleasurable.

    If you are comfortable with your ostomy, your partner will likely be too.

    Reply
    1. Stephanie Hughes Post author

      Thank you for being willing to share your experience. It’s so important to get a guy’s perspective, too.

      Reply
  2. Serra

    Thank you so much for doing this post! I have had UC for 14 years and with my recent colonoscopy, I was worried that I might loss my colon. My husband and I have had a conversation about what it might be like to have sex if I had a bag and we both kinda made funny faces at the matter, because we were unsure of how we would do it. I would have never thought about the maternity band. That is a grand idea! You have made me feel some what at ease if it is to ever happen. Thank you!

    Reply
  3. Aaron

    I’m a man and I haven’t been quite so lucky. Without getting into details, my second surgery which removed my anus and rectum also changed how things worked for urinating and sex. I never had an issue with urinating prior to the surgery, but I now require Flomax which has some sexual side effects. I also have found that gaining and maintaining erections has been a challenge. I also have required anti-depressants (your colon produces 95% of the body’s serotonin) which also has sexual side effects. I still desire intimacy with my wife, but it has become a major stress point in our lives. In addition, the prednesone taken while battling UC caused necrosis in both my hips so I have had a bilateral hip replacement three weeks ago which physically keeps me from even attempting sex for a few months.

    Reply
  4. Darla Robinette

    Stephanie this is a wonderful and wise post. My sex life has changed both during my ileostomy and since, now that I’ve had a reversal. I lost my entire colon 3 years ago and had a bag for 15 months. Since my reversal, I have to take several meds to slow things down, including fiber pills. I have pretty good control during the day, but occasionally still have issues during sleep and at night. I always have that little fear in the back of my mind that something will “slip out” during sex due to relaxing the affected muscles. My rectum is sewn directly to my small intestine, no j pouch, so there is no slowin’ the goin’! Anyways it really helps to know that I am not alone in my journey. Thank you for broaching this subject with honesty and grace. Darla

    Reply
    1. Stephanie Hughes Post author

      Thank you so much for your comment, Darla, and for sharing your experience. I hope you continue to find what works for you in this area. It’s great to hear from others who can relate.

      Reply
  5. Mickeyg

    Thanks for sharing. I have had Crohn’s for almost 30 years and an ilestomy for 4. My husband always said he wouldn’t care if I had an ostomy but I still wondered. I ended up with mine after an obstruction ruptured, I was just expecting another resection. 4 years later my bag doesn’t bother him as much as it does me…he’s just happy I am still living!

    Reply
    1. Jennifer Miller

      Hi Mickeyg.. thank you for that post. I have had Crohn’s for going on 30 years too.. with my ileostomy for 7. I don’t feel alone now. Thank you very much. Hope all is well.

      Reply
  6. Glittery Mitzi

    I loved reading this & wish there was more written to empower women to continue feeling sexy & feminine with a colostomy. I am 3 months post op with an ostomy & have managed to maintain an active & varied sex life with existing partners. I feel the need to shout from the rooftops & show pictures of my sexy self to other people, I may have changed a little but I am still the same woman I was & I wish others could share my sexual confidence.

    Reply
  7. kristin

    Hi – I’m 52, divorced 2 years, started dating in the fall and had colonoscopy, surgery and ileostomy on NYE. I use a tummy wrap or belly band and it covers up the pouch and my partner has been understanding and still interested 🙂 I was upfront with my drs throughout all of this – surgery, ostomy, chemo, radiation about how it might affect my sex life. After no sex life in a bad marriage, at 52 I felt I had nothing to lose by asking all my questions up front!

    Reply
  8. Lori A

    I’m 45 and was just diagnosed with UC in Jan of this year. I am scheduled for surgery tomorrow. I feel like I have lost every bit of sexuality that I ever had. Weight gain, fatigue etc.. just generally feeling gross all the time. My partner and I have been together almost 3 years and this has totally ruined our sex lives. He says it doesn’t matter but we haven’t had sex since June so I know it does. Having a bag is going to make it worse and I feel like my sex life is probably over. Anyone else experience this?

    Reply
  9. kat bailey

    My husband has recently had an ostomy. We have had sex twice it was awkward but we took it slow. The problem is the more he recovers the more conscious he’s become. He now won’t undress in front of me. He hides his bag. He says he hates it and he feels ugly and unattractive. I think he’s as beautiful as he always was but no amount of me telling him that seems to make a difference. He has always been quite body conscious but he is so much worse. He’s only 26 and it was an emergency surgery for UC. He is very depressed about the whole thing. His stoma is also sore and he just generally can’t get comfortable. I hope it gets better soon. I’m really worried about him.

    Reply
  10. Jill

    I wish I could say something wonderful. I have had crohns for 22 years I have fought off this ostomy for 19 of those. I had surgery In JULY after Finally coming down between dying or an ostomy. So here it is the thing I have despised for over half of my life and it will never go away. I hate it and I hate myself.

    My husband who is wonderful and I have been together for 20 years and Married for 12. He doesn’t deserve this. It took an already difficult and stranded sex life to impossible. Now after seeing a specialist a state away only to find out I have vaginismus a complication for surgery and rectum removal essentially causing a muscular clinched obstruction Just inside my vaginal vault. To which they respond I can go through tortuous physical pelvic floor therapy and progressive dialator treatment but it will always be an issue. I can not even tolerate a small tampon anymore. This will be the death of me. I just don’t see a light at the end of this tunnel.

    Reply
    1. kat bailey

      You can always do other things if penetrative sex is out. Just make sure you enjoy each other in other ways. I understand my husband isn’t physically capable right now and I am also 8 months pregnant. But as long as he is affectionate then it’s okay. You don’t stop loving someone just because you can no longer have sex. Have you thought about counseling? My husband is waiting on his first appointment and I think it will help loads. He also really didn’t want the surgery. He hates his body and loathes the bag. I bet like me however your husband still finds you beautiful to us we just see a thing thet saved the life of the person we love. Please try and get some help you sound so depressed. If you have Facebook there is a closed group called #getyourbellyout it’s an IBD support group with people all over the world in different situations. Some with stomas some without. They are welcoming and there are people on there from 16 to 70. Take care x

      Reply
    2. Stephanie Hughes Post author

      Jill, I am so sorry that this has been such a difficult journey for you. I wish I had all of the right words to make things better, but sadly I don’t think those words exist. But do know that I and this whole group of others who have dealt with similar situations are here for you, to talk and to offer any advice we might have. Please feel free to reach out to me at stephanie@stolencolon.com or on the Facebook page where you can interact with others, as well.

      Reply
  11. Karin

    I have had an illeostomy since 2007. This past October, I had my rectum removed as well. (Dx Crohns, autoimmune hep from Remicade, Hashimotos, alopecia, R.A., 16 perirectal abscesses in 8 years), and now heart issues. I have spent much time alone fearing having to tell someone, after already experiencing years of someone who got angry over my bags and made me walk in the rain, snow whatever to the burn barrel because it was disgusting, and I should know that and be more unselfish to others.
    I sat around forever not going anywhere. I still don’t much. I have a fear of public at times now, but I have found someone who allowed me to be me. Someone who says my only worry is how long he would go to jail for tearing someone apart for making me feel that way again. I am finally somewhat, slightly comfortable with me. My point is, please be aware of words. People will say horrible things at times. Don’t lose years of happiness like I have being alone out of fear. The fear of trying to date haunted me so badly. I know now that there are very mean, hurtful people who don’t care that they are damaging your self esteem. You have to shut them out. I deserve someone who sees me for the beautiful person I am, and I deserve to hold my head high…God made me this way, and he does NOT MAKE MISTAKES…it’s all in how the other party makes you feel about you. If they make you feel bad, RUN!!
    Karin

    Reply
  12. rick peters

    I am 39 and have had an ostomy since I was 23. I too was married before so my wife kind of inherited it so that was not a problem. As a man, my biggest issue was busting open a bag or getting a leak. I learned to always time things during low output times and found if you wear an ostomy belt you can tuck the bag off to the side so it is in no way in the way and then if you leave your shirt on it is almost like you don’t even have it. The issue came in 2010 when after 17 years my wife and i divorced. I was scared to death of having sex. I got really lucky in that i ended up being with my high school sweetheart and she made me realize that with the right one it really does not matter. she really gave me the strength to move on and not be embarrassed by my ostomy. I now openly talk about it with no issues. You cant let it beat you. I simply throw it out there that I have the bag but it is better than being dead. People become impressed with your positive attitude. Although things never materialized with the high school sweetheart i credit how she was with me during that extremely scary time in giving me the strength to know i can have a life with this. She will always be one of my closest friends.

    Reply
  13. lindseyf.

    I am 28 years old, and I’ve had an ileostomy for seven and a half years. I’ve been single since I had my first surgery. Don’t get me wrong, I date, but I have yet to have one of those let’s-make-it-Facebook-official relationships. Dating and sex (and really fun make-out sessions) has been up and down for me over the past seven years. After I had my last surgery and was freed from the hospital for a while, my boyfriend (at the time) and I broke up. I was 21, he was 24, it was a new relationship, and he and I couldn’t really handle what had gone on over the past few months.

    For a few years after my new-found lifestyle, I didn’t even think about dating. The option just wasn’t on the table because I wanted to focus on adjusting to my new lifestyle, and getting over this depression I had. In 2011 (yes I waited that long), it was back on the table. I started to date again. Now, I majored in psychology, and learning about people and human dynamics fascinates me so I’ve treated this as my own little social experiment. Don’t worry, I didn’t mess with people’s minds. I did, however, try out different times when I told the fella. I realize that everyone is different, and this is the furthest thing from an actual real experiment, but it interested me, nonetheless. I told guys via text and over the phone (you know, when people hold the device up to their ears and talk and listen to each other… you remember). I told a guy on the first date. I waited and told a guy on the second date. I told a guy seconds before we were about to get busy. I’ve even neglected to tell guys, and just got on with it. Sometimes they asked what it was, sometimes they didn’t, sometimes they figured it out for themselves, and I’m pretty sure there was one that didn’t even notice at all. ** I feel like I need to add a little disclaimer at this point. Most of these encounters were make out sessions (some more intense than others… you know how it goes), and only a few of these examples were actual sex.**

    I’ve learned quite a bit from all this slutty-ness (I’m making a joke, I’m not being mean or self-disparaging). In my experience, some guys have been downright rude, mean, and, lets face it, shallow. Some guys were complete gentlemen about it. Some guys totally and completely understood because a family member or close friend has dealt or deals with it. Some guys said, “Oh it doesn’t bother me,” but secretly in their head it actually does, and then they fell off the face of the earth, never to be seen or heard from again. Some guys never thought twice about it; they genuinely didn’t care because they liked my bubbly personality, they enjoyed my infectious laughter, and I’m not gonna lie, I have fantastic boobs, and a pretty nice ass!

    I’m still single, and still looking for the right guy for me. But the most important thing, is that I had to learn to embrace it and own it. Even if I don’t feel sexy, I act like it! It took me a loooooong time to get here, but I think miss Taylor Swift says it best– “I’ve found time can heal most anything, you just might find who you’re supposed to be.” — come on! That’s genius, and, for the most part, true!

    Reply
  14. tae

    Hi I have a question my boyfriend and I have been dating off & on for abt 5 years now and we have never had sex. He has a colostomy bag as well due to the fact he has been shot and also has spinal bifida. He just recently told me about how he got it & it was the first time he has shown it to me. I love him very much & he loves me the same but I am trying to get to the level of intimacy with him since we have never been intimate due to the fact of me wanting to wait and I am completely scared that I will hurt him or the bag may pop. Can you please give me some advice on how I can try to explain to him how I feel or just trying to get our relationship the way it should be?

    Reply
  15. Fi

    Hi Stephanie, I’ve been following your blog for a couple of years but recently I’ve come back to this post … because the time has finally come for me to go ‘permanent’ and I wanted to ask you a couple of questions. I was diagnosed with Crohn’s when I was 24, in 2002, and had my first temporary ileostomy the year after I got married, in 2006. It was reversed later that year and at the time I was glad to see the back of it and be back ‘in one piece’, but then in 2007 I suffered a bad blockage and ended up in emergency surgery. The result of that was another ileostomy, but theoretically still the option to get reconnected one day. That was nearly 9 years ago and I haven’t looked back, embracing my life as a strong, sexy, successful ostomate … until now. The 10-year time limit that I was set on making the Big Decision (reconnect or go permanent) has now more or less arrived and I have had to decide. Obviously there was no way that I wanted to back to what life was like after that reconnection – drugs, accidents, anxiety … So I’m committed to having the op in a couple of months. But I’m scared that, at nearly 38 years old, I’m about to have the op that will mean that my sex life is never as good again …

    I was going to send you a message privately but your ‘contact me’ link seems to be down, so I’m writing this instead. I hope you have a minute to reply. All the best.

    Reply
  16. Christie Erin

    As you know I too was married when I had my surgeries. I agree that it felt painful after surgery and there is always an adjustment period. After my marriage ended I had to deal with the reality that I would have to “date with an ostomy”. Luckily guys don’t really care about the ostomy. I am upfront when it comes to my ostomy so whoever can stay or go and not have anyone’s time wasted so to say. My advice is just be confident about yourself. That will overshadow any worries about having an ostomy and being intimate.

    Reply
  17. lauxa

    Thank you for this post, I am 38 and had a colostomy due to rectal cancer about 6 weeks ago and between the radiation and surgery everything is just painful down there with no enjoyment from sex or even non-penetrative activities. Despite this, we are trying to maintain having regular sex in hopes that it will prevent scar tissue from forming due to the radiation. I also feel like a mutant with the bag and having had my ovaries killed by radiation and am having a very hard time accepting these changes. It takes everything I have to just not cry during sex, which is not great for my dear husband’s libido either. I still have 3.5 months of chemo to go as well which doesn’t help. I have just been wondering if it will ever get better and the 3-6 months number is helpful.

    Reply
  18. Bev A Cook

    I’ve had my ileostomy for nearly 12yrs and have only had sex twice. I was treated horribly by the person. Since then no sex at all! I’m not comfortable with my ostomy and don’t think I ever will be.

    Reply
  19. Dale

    10 years ago my wife had a double mastectomy and now colorectal Cancer . Now she is the most beautiful women I know and I tell her this every day , sohard to find the words without tearing up . I really struggle with the fact that this poor women now feels like a monster and no matter what I say or do she still feels this way .
    She feels like she’s lost all feeling of being pretty and refuses to use her dyalater, it’s been alittle over a year and my fear is that she’ll have to endure a mother painful surgery if she doesn’t use it . I ll be allright and will stand by her until the day I die , I want my wife’s hugs and kisses her yes no! And maybes please any suggestions.
    Loving husband

    Reply
  20. Hannah

    I’m so glad to have found your website! As a nursing student, I am always looking for ways to instill hope in my patients, and it can be hard to talk about chronic conditions I’ve never experienced myself. Thank you so much for writing candidly and hopefully about your experiences, including sex, an integral part of human living! This is such a great resource, and I will be sending patients to your site, as well as remembering your stories and insight to share with them. You rock!

    Reply
  21. Katie

    This is such a beautiful site, positive and hopeful. I love it. I’ve had an ileostomy since I was 25. I’m now 41. I had Ulcerative Colitis, and I struggled with trying to heal it, or at least manage it. I fought off having a surgery, and ended up in emergency surgery fighting for my life. I have to say, despite the physical pain and emotional anguish of the illness, I was and still am very grateful for the lessons learned, the wisdom gained, and to be alive and well, living with an ileostomy. I am a shy person naturally, so I’ve only told some close friends. This has also made sex, at times, a challenge, but I try to get to know a man well enough first so I feel comfortable being myself before I talk to him about it. As long as we’re comfortable together, it doesn’t get in the way. It’s honestly made me appreciate life a lot more. I think sex is better for me now than before I got sick even. I’m sure that comes with knowing myself better, and appreciating life and people even more than I used to. It also makes it more special, or more intimate because I’m more protective of myself. I honestly believe you can do almost anything with an ostomy. I even train Martial Arts. I have been for several years. I just take really good care of myself, and I don’t do hard combat, but I still train the skills and challenge my body. It really means you have to know your body’s limits well and when you can push them. This post is kind of all over the place, lol. Back to sex and relationships…I’ve had longterm boyfriends, and I’ve also dated men. I don’t like one-night stands, never have. I’ve had men treat me poorly, or react strangely, and I’ve also had men be warm, tender hearted, and amazing. I’ve had times where I gave up, crawled back into my shell, and shut men out to be alone for a while, but I think those times come for everyone, or nearly everyone.

    Reply
  22. Clara Right

    Okay so what I want to know is can anything come from the sex? My sister is interested in a guy who had his colon removed. I know she would like to have kids some day and am wondering if it would be possible with him?

    Reply
    1. Stephanie Hughes Post author

      Clara, having the colon removed should not affect fertility in a man. It’s a little more complicated for women who’ve had surgery, but there’s no reason it should change anything for the man, unless there was a specific complication during the surgery. Some studies have shown lowered libido, so that could be something to consider, but that’s really a different question.

      Reply
    2. Kat bailey

      The only time the fertility would be affected is if they damaged the nerves during the iliostomy formation and it stops him getting an erection. If he is functioning correctly then his sperm should be fine. My husband has no colon and he is all fine so to speak.

      Reply
  23. Pingback: The Sick Adventures of a Semi Colon Girl

  24. christie

    Thanks for your courage to share your experience & knowledge with others.

    I don’t suffer the same experience really. I went to the ER for a horrible stomach ache, thinking appendicitis…WRONG! I was immediately rushed into surgery for a preferated bowel. I woke up in the hospital with a Stoma & had no idea what that was. When I was released from the hospital, weeks & months later, I finally found the magic supplies & procedure that works for me. This all began back in August 2016. I have been married to my wonderful husband for 32 years & none of these changes have bothered him at all. I’m the one who feels like the “bag” would ruin our sex life. I’m going out today to get a couple of those wraps you mentioned. I feel that I’m now ready to go for it!

    We have a pool & spa so I must ask…how do you swim or soak in a spa with an ostomy bag?

    Thank you for your very helpful story. Prayers to you for a happy & wonderful life.

    Reply
  25. leslie a suko

    i am so glad i stumbled onto this site and stories. I have started a new relationship and in 2 days we are going to try and see how sex goes. I feel more comfortable after reading the stories. Will let you know how it goes.

    Reply
  26. Nick Dial

    This by far has been my biggest fear. It looks like I’m going to be going through a divorce, and my doctors have repeatedly stated I may have to consider getting a bag because of my Crohn’s disease. Constant fistulas and surgeries has been tearing me up.

    I’ve been feeling so insecure and lacking confidence in the idea of having to date again, let alone date again with crohn’s disease and possibly having a bag.

    Reply

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