Ostomy and Intimacy: Debunking Misconceptions

I have various reactions to my ostomy from women. I had a friend make advances to me and I was so starved for intimacy that I didn't know how to approach the subject. To make a long story short; make sure they know beforehand because a scream before sex is not a turn on.

Kauai boy, Pilgrim, Timothy, I ended a 6-year relationship, not because of my ostomy (he never knew, we didn't sleep together) but because it was a long-distance relationship and he wanted more than being together 3-4 times a year. He did want an intimate relationship with me, but I begged off by telling him, "With your high blood pressure, sleeping with me would be lethal." We had reconnected after 50 years (!) when I found his phone number and called him. We enjoyed each other's company and did lots of hand-holding and good, orgasmic kissing. So, KauaiBoy, don't give up on yourself. You sound like a sweet, loving man. Keep on pursuing your dreams of that fireplace scenario, and it will happen. And Tim, you're right about the scream...unless it involves handcuffs. -D

I have to add my story: I've had three ostomies since 2005, now a permanent colostomy. Got myself a divorce about 3 years ago, was a bit worried about how men would react. Well, the answer has been: they pretty much don't (even Americans who I thought would be more superficial than Europeans; sorry). I've had one-night stands, dated, now have a boyfriend. No one has screamed, run away or cursed me (to my knowledge). Of course, I haven't heard from some people afterwards, but that sort of thing is a given in the dating world - happens to my friends without a convenient excuse just as well. In the beginning, I would tell beforehand but after I noticed that most guys don't give a crap (pun intended) I mostly stopped and made it a non-issue. I tell about it if it comes up and I don't try to cover it during sex. With my current boyfriend, I did just that, told him afterwards in the morning and he said ok. That's it. Never bothered him the slightest. He's 8 years younger than me but he thinks that I'm hot, pouch or no pouch :). And there are lots of guys like that, young and old. I'm not saying it's all about the attitude but a lot of it is. If you go around thinking you're not worth it and that the ostomy is horrible, people will think so. You're the one who knows you the best and most people have absolutely no idea what an ostomy is. Smile, be open to new people and things, get out of your comfort zone, don't let the ostomy define you, be proud of what you have gone through and don't use the ostomy as an excuse.

Beautifully said!!

I am thoroughly confused. Please help me clarify things. First of all, how can we not be at risk in a pool? My zippy leaks all the time. A constant struggle. I do not bathe or go to pools. Who wants to sit in poo? Or infect others? I was attacked by C. diff, woke up from several months of coma, the Bride of Frankenstein. My problem is that my ileo is much higher than where it should be...and nearly every kind of clothing constricts or binds it. Or now, retracts or protracts, which is painful and causes the flange to lift off like water under tile. The movement of the abdomen aggravates and breaks the glue bond quicker, they tell me. And I cannot tie my shoes...bend over, pushes on stoma. Riding a bike, running, leak. Hot steam. Or humidity, leak. Pick up anything that strains abs, like a case of food, or 40 pounds of potatoes (I used to be a chef), leak. I am not seeing adult activity, basic life is a challenge. I know this sounds whiny. Let me tell you, I have had CML for 13 years, off and on 3 rounds of experimental meds that have numbers for names. I worked in Europe and Chicago and cared for two sets of grandparents aging, and my family...and most people never knew how sick I was. Cancer never impeded my life. But Zelda Zippy has completely derailed me. I woke up to tubes 88 pounds. They said you might die yet. And I said well, we will see. All the info was "don't eat this" and then Z said it's okay. The doctor said no idea really. So I ate and stretched...I have a 12-inch scar, cut stem to stern. I had to relearn to walk, get off the drugs. Fought to go home. Fired the visiting nurse the second the final gap closed. Taught myself to walk, weaned myself from the morphine when they would not. And finally, rejected the idea of disability. Drove a 26-foot truck, a car trailer, and 3 kitties from NM to Notre Dame. Talked my way into a job... And it has all fallen to the mud. Pantyhose required for work with skirts caused illness and leaks. She sits too high and waistbands rub. Forget jeans, instant leak. Or chef's pants. Heat, humidity, dehydrate, dizzy, pass out, nauseous. Cancer never did this. Puke, floss. Brush. Move on. Rest a bit, move on. I did what I wanted. But ileo? It has ruined my life. Thank you for listening.

Dear Eleogirl,

I'm so sorry to read your story and learn of your difficulties. I don't know how I could stay healthy without being able to do my water aerobics. I use Convatec with disposable pouch and have never had a problem these last 11 years. I exercise in the morning, am careful not to overeat, and make sure I'm sealed up tight with that waterproof tape for my self-assurance. I am hoping the best for you, dear girl. Do check with your ostomy nurse/provider to see if there's something better for you.

Hi there! Like you, ConvaTec is good for me... Hollister is definitely not. The best guess is the glue is different... I am allergic to latex and glue in many bandages... of course I am! And also, as a chef, I have a keen sense of smell... and something about the plastic they use and bike equals offensive to me! My ileo is suboptimally placed. It needs to be over and down about an inch, and then all would be normal and good. And when this happened, outside of the current medical issue, I was healthy, with rock solid muscles and abs... it made the sewing up very difficult for them... no extra fat and skin to stretch a bit, and sewing through really strong muscle. Thank you for the note. Honestly, once done typing this, I have to load 3 sets of sheets, my comforter, three mattress pads, 4 pairs of PJs, 6 towels, socks, soaking in Dreft and hydrogen peroxide, and go to the laundry... as the comforter does not fit in my washer. From 2am until 3pm the next day, I waited for the retracted ileo in the cold tub, but I crank the heat to 90 and have the radio on! Finally, clean up, new flange, go about business, within an hour, LEAK. I do not know how you do it for years.... and the worst is that before this, I took a bath every day, and when life was bumpy, retreated to hot bubbles, a book. My tub is now a giant soaking vat for icky clothes and bedding. Giggle. Hope your weekend is relaxing. Happy swimming!

Hi Ileogirl! Like you, my ileostomy is not in an optimal place. Not on the waistline (that sucks!) but between my pubes and where my navel used to be. Very inconvenient, but hey, I'm still alive. That is my second ostomy site. The first one that stopped working and perforated was in the usual side location, but woke up from the second surgery to my new appendage. Sometimes I feel like I am growing balls..lol.....As for your appliance dilemma, have you tried using a convex version? Works much better for me. I had lots of leaks in the beginning too. One day while still in the hospital, they had to redo it 7 times!!! We were all ready to throw a crying fit! But we all learn to become our own best advocate. I started really paying attention and discovered that they were using baby wipes to clean me up. DUH???!!! Baby wipes have moisturizing lotion. No wonder they wouldn't stick for long!!! Once that was addressed, and only water was used to clean with, and the area well dried, bags would stay. I use Convatec, Nu-Hope or to be more discreet Marlen....all CONVEX and pre-cut...with paste in needed areas to fill in and bean seals (they are bean-shaped breathable tape strips) to help keep things in place for added peace of mind. I now have a boyfriend who is so understanding it blows my mind. And strangely, I have fewer blowouts....maybe because his acceptance has helped me accept it better myself and not have my mind on it all the time. By the way, I had to learn to walk 3 times during my 6-month hospital tour. My question to you is....Have you tried talking to your surgeon or another one about relocating your stoma to a better and more practical location? One thing I became very aware of during this whole life-changing experience....I can either choose to practice gratitude for all the good in my life (including my LIFE!) and focus on that and be happy or waste my energy on all that I have lost and who does that help???? Sure, I have my moments...but hey...Life is good!! Big hug to you!!!

Nicely said!!

They said the current stoma works well and I am happy to be alive. If I had insurance, money, no problem...knit away. But as I have no family, no money, and no job now....hard to do. I want to go back to work! The surgeon today though said, "You have been through the ringer and I am very proud of you. You deserve a chance to try reversal." I just got approved for Medicaid, but SSI turned me down twice, so I need an attorney. But maybe, surgery will work! Who needs disability!

Kuiaclyde. You are a rock star. Hugs and prayers for you.

Hi everyone, the sex thing is a bit scary. I've been an ostomy for nearly 13 years. Recently separated, but nothing to do with the bag, we just grew apart. My ex-husband was very supportive and the bag never bothered him at all. I may have a potential new love interest with someone I knew very well before my surgery 18 years ago. He remembers me as I was then, but he does not know how I am now. Not sure how to tell him... any suggestions?

Oh, by the way, I have read "It's in The Bag" and "Under the Covers"... great read! I would recommend it to everyone.

Hi little one. I would wait until it becomes apparent that you are both interested in taking it further. Take your time to get to know each other again. Then gently bring up the topic that some things have changed for you and what happened to you 13 years ago. I am now heavily involved with someone that took it all in stride when I told him. He simply said, "That's life." His wife died of breast cancer 19 months ago and he saw her through all that that entailed. As we get older, I think we learn that perfect is exactly who we are. :)

Thank you, Vikinga. He knows that I was very sick several years ago, and he said you will tell me about it when you're ready. I hope he too will take it in his stride. And you're right, perfect is exactly who we are :) It's great being able to share things with people who understand. It's taken me thirteen years to do it though!!! :))

I'll let you know how it goes with my newest guy. He's 8 years younger than I, but I did tell him that my libido hasn't changed since I was 16. We really like each other and I know he would like an intimate relationship. Unlike my last one of 5 years who never knew about me because I wasn't physically attracted to him, this one is different. Yeah, I know this older woman will have to let him know, and I will do so when the time is right. He's very intelligent, well-educated, well-traveled, and compassionate. I'll let you know how it goes. :)

You youngsters, keep on keeping on. Life is to be enjoyed and relationships are to be savored. If one doesn't work out, according to my 3 daughters, there are many fine guys out there, no matter the age, Mom.

What's it like....ya know wink wink, they ask.....to find a love and make it last.....I reply to what's ya name....actually it's just the same.....we touch and laugh..... cuddle and kiss.....love has no prejudice.....the stars the same.....the middle too.....at the end no smell of poo.....love's a game....for all to play....this bag's not in the way.....

Hi folks, not been online for some time but still get some of the responses to this thread. Update: As you know, I was struggling with my partner after my ileostomy, let alone my reversal, and ended up with a huge incisional hernia the length of my abdomen... Things just got worse and I was forced out of home in Dec 2012 after I found he'd been having an affair amongst other things! I was homeless, penniless. It was deep in winter and I was forced to pack a bag, and my friends took me in. Then I ended up in a refuge. Two years later, I still have my enormous hernia but am finally settled in my own place, well enough in body and mind to ask about whether or not it can be done. I love living alone again and at least am back with friends who care about me. Not sure if hernia can be done, we'll just have to wait and see. I look 6 months pregnant and my clothes don't fit, but so what... I'm alive and happy.... After collapsing at the hospital recently, I've had various multitudes of tests and found I now have a hiatus hernia also - which makes sense of some symptoms over the last few years - so here's hoping.... If I do go for hernia reversal, it's 50/50 as to not only if it works but if I come through it after my last operation history. I'll keep you updated... so my love to all my friends on here. xxxxxxxxxx

PS... I'm now in a new relationship and he doesn't care about the hernia :-) XX

I am new to this site and my partner is working out of state, so we haven't seen each other since I had the colostomy. He's coming home in two weeks and I have questions about how and what you do about the colostomy when you are intimate?

Miss Rubysoux,

There are very pretty ostomy wraps you can wear to cover your appliance so it doesn't get in the way.

The five doses of radiotherapy prior to the surgery, followed by the surgery, have destroyed any response as far as a normal reaction. I am male and feeling quite numb and lost with this.

DH- A good reply to the sex or other thoughtless questions is: "What did you say?" And when they repeat the question, you could say, "That's what I thought you said!"

Don't have any problem with mine!