Valentine’s Day with the other O word – ostomy

This is an amazing post about a subject many of you have tweeted and asked me questions about since my operation, sex!



As of yet I haven’t felt comfortable talking about my sex life on my blog, mostly because my parents, siblings and employers often check what I’m up to and I’m not sure I feel comfortable about them reading about what I get up to in the bedroom department.

But this blog entry by a woman I admire deeply for her honesty over all issues to do with living life with a Stoma says everything perfectly, and just in time for Valentine’s Day too.

Personally, intimacy following my operation has been difficult to come to terms with. I have embraced all other aspects of life with a bag, but there is a lot to get used to and I think it’s not unusual to find yourself feeling unattractive when it comes to intimate situations. I have accepted my new body, and so has my partner, but I still have days which are tougher and I feel less attractive (due to bloating, leaking, bad fistula output, and general crappiness) than the last.

I know that I am attractive, and having a bag is a wonderful life changing thing that I should embrace, but like every woman I have days where I just feel unattractive and unhappy with the way I am, mostly that is related to my bags – almost every time my leaking fistula bag.

This Valentine’s Day I wanted to say thank you to everyone who is brave enough to talk about intimacy issues after surgery, which has helped me realise that there is a transition period and I should stop giving myself such a hard time. Living life with a ostomy takes a long time to get used to, the benefits are massive, but it’s ok to feel down some of the time.

I also want to say thank you to my boyfriend whose love and loyalty have never swayed despite all the sickness induced nagging. He has stuck with me through all of this journey, and I have never failed to be anything less than beautiful in his eyes. His support has made all of this so much easier to come to terms with, and I am so lucky.

Anyway I hope you find this blog entry useful from The Stolen Colon

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

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 here, on Valentine’s Day Eve, 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.

Like 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 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!


9 thoughts on “Valentine’s Day with the other O word – ostomy

  1. Hi Rachel, Been and done it, I know what you have been going through, This year I will have had “FRED” for 35 years due to “Chrones”.
    I too had the Fistula with the chance of re-joining the Colon 12 months later but it never came to being.
    I am now in my 77 th year and now manage the Manchester IA WEB site,
    In a few weeks time we are holding our AGM, and have three speakers lined up main speaker our President Professor Gordon L Carlson Bsc MD FRCS who will be giving a Q & A session, always been very popular in the past.
    Hope you continue feeling a lot better in yourself,
    Best Wishes,
    P Stott, webmaster/committee member ia-manchester.

    • The AGM sounds fantastic. I didn’t know there was a manchester group?
      That’s incredible to have had Fred for such a long time, me and Winnie seem to be getting along just fine, it was the fistula that really disagreed with me, it was truly horrible to live with. Just a week after surgery I am already feeling loads better and more positive.
      Thanks for your help, i will check out the website.

  2. Love your blog. My son was 17 and had total colectomy and ileostomy after sudden onset colitis. Such a huge life change for him. He had his bag for over 2 years and then had major surgery to create a j-pouch, with his last op in June last year. Since then he has been in and out of hospital for treatment for abscesses and fistulas. He suffers so much without complaint and I am so proud of him. Next week he starts a year long course of treatment to prevent the abscesses recurring. There are days I wish he had his bag back because he was healthier then than now, but he’s 20 and wants to persevere with his pouch. I will show him your blog because he doesn’t know anyone who has had colitis/crohns. Thank you for sharing your story.

    • Sounds like he is really going through a bad flare, but I admire him for keeping going. It can feel like your alone with this illness despite support from parents and friends, but there are so many people out there going through exactly what he is. He sounds incredibly brave and strong and positive. If he ever wants to chat I’m on email and twitter.
      Lovely to hear from you, he is lucky to have someone so supportive and caring in his life.

  3. If you have your rectal stump intact were you never offered a “J pouch” not sure if this is just a name my consultant at the time made up? Or not but I started getting UC symptoms while I was pregnant with my now twenty three yr old daughter, by the time I gave birth in oct 90, I was very run down but it took repeated diagnosis of piles and other rubbish before being given tablets for it in march91 still not knowing what I had, obviously after what I thought was a course of tablets, it came back with a vengeance in oct 91 and got steadily worse till I was sleeping on bathroom floor too weak to go back to bed after losing so much blood by 17th dec they finally took me into hospital trying to rest my bowel by expecting me to drink an elementary liquid diet which i just vomited back up, gross! Then on 23rd dec they rushed me for emergency surgery after giving me a supposedly light diet of salty soup ice cream and other very unsuitable food, the result was plummeting BP and decision made to remove the whole of my large bowel and an ileostomy I was only 23. I very nearly died, i kept getting infections around stoma site as my skin was paper thin from the steroids. By the end of Jan the decision was made not to send me home for six months to live with the stoma they operated again and looped part of the small intestine to make a reservoir or J pouch and then rejoined it to the rectal stump. It took a while to settle down but its the best thing they ever did for me! And Ive been living stoma and mostly illness free for the last twenty five years! I dont understand why you didnt have it done? Or offered to you its so much better than the stoma farting to itself and all of those awful things that go with the stoma! I very occasionally get ulcers in my rectum if Ive eaten stuff that disagrees or Im stressed but that is nothing like the blood i used to lose every night! If you ca, I highly recommend the op! 🙂 good luck. Sharon

    • God sounds like you’ve been through absolute hell. I share the same sleeping on the toilet floor experiences, also the out both ends experience. And it must have been horrendous with a new born too!

      I haven’t even really been given the option of a j pouch. My rectal stump is so inflamed it is out of control and they have no option but to get rid of it. I always thought my ostomy would be temp but I’m not dreading having it for evr, if it means getting rid of all the mucus coming out of my fistula and stump xxxx

      • No I understand that completely I remember that well but althou two thirds of my bowel was ulcerated it was not usually in the rectum, I have had a few flareups there since the op but it never gets any way as bad as I used to suffer, Ive cut dairy aNd other stuff since which def helped so I do luckily have as near to a normal as I can get! Altho youd think that would be it for the bad health luck! I then had a stroke aged 41 so the stress that may have contributed to the UC got me again! 😦
        Good luck with your continued journey with illness xx

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