Every so often I will hear a conversation about romantic relationships while living with an ostomy. Often someone will say they were left because of their ostomy, or that they’ve resigned themselves to being alone because no one could love them now. And I have one thing to say to them: STOP IT. An ostomy does not make you unlovable. It doesn’t make you anything other than another human with your own set of experiences. That ostomy is simply a symbol of the life you have lived and who you have become through those experiences.
Now full disclosure before I get too far into this: I was married when I went through surgery to get my ostomy, so I have not gone through the dating process with one; however, I believe what I am writing is true no matter what point you are at in a relationship.
Sometimes, it’s not the ostomy.
When you go through something that necessitates getting an ostomy—whether it’s a chronic condition like IBD or some sort of trauma—that’s a lot for a person to handle. It may bring up feelings of “why me?” or resentment towards God or the world. Constant pain can make anyone feel frustrated. Having difficulty after surgery can lead to depression, feeling sorry for yourself, and lashing out at others. All of these can cause issues in a relationship. If you were someone whose partner left after your surgery, I am not at all saying that you are at fault. What I am saying is that going through this can change people, and when people change, the relationship changes and sometimes that relationship no longer works. So, if you were someone who was left and you felt they left because you now have an ostomy, there may be a lot more at play than simply that.
If you were truly left or rejected by someone because you have an ostomy, then they did you a favor.
If the simple fact that you have an ostomy freaked somebody out to the point they left, then they were not the right person. And in my opinion, it’s much better to know that now then to find it out years later. If someone goes running because of an ostomy bag, then you know what? All of those wedding vows… “for better or for worse, in sickness and in health” mean jack shit to this person. Would you really want to be with someone who can’t honestly say those vows and mean them? To me, it just shows they are a shallow person whose intimacy is only skin deep and that’s not the kind of person I would want to spend the rest of my life with.
I don’t think I’m lucky that I found someone “special.”
My husband is an incredible man. He’s been through a lot with me, driving me back and forth to the hospital dozens of times, spending hours sitting in surgical waiting rooms. I feel very grateful that I found someone who loves me the way that he does. But I don’t think my husband is some special breed of person who is willing to go through all of this. Of course I am very grateful for my husband and all that he has done for me. I consider myself very blessed to have found him and I do consider him to be someone special, but it’s not because he stayed with me after all of the sickness and surgeries. I consider him the same kind of special that every person who finds the right partner considers them. I think he is a good man and an honest man who takes his vows seriously. When he said, “in sickness and in health,” he meant it. That’s what love and commitment is all about.
I know dating is not easy, especially when you throw an ostomy into the mix. I know I would be unsure of myself in the situation of having to tell a potential partner about this part of me that’s different. I won’t pretend that I know what it feels like to be rejected by a romantic partner because of my ostomy; I know that would hurt so much and would make the idea of putting yourself out there again much more difficult. But in the end, you have to realize that no matter what happens, it’s for the best. If the person runs, then good; at least you know what kind of person they are and you can go ahead and move on to find the right person, rather than wasting your time on them.
Finally, I don’t believe in being loved “in spite of” your ostomy; it’s a part of who you are and any partner should understand that and accept it for that. But I think the first step is learning how to accept the ostomy ourselves. Because if you can’t be accepting of your own ostomy, how can you expect someone else to? We have to understand and appreciate that living with an ostomy, whether temporary or permanent, has forever altered our life. Those changes will stick with us, no matter what comes our way… from this day forward… for better or for worse.
I want to find true love, but I wear a colostomy not because of crohns but because of cancer. I just don’t think anyone would want someone like me. Is what I been told. So you stepanie Im proud of you.
Hi Vickie,
I was in a relationship when I was diagnosed with cancer. Went through the whole nine yards with chemo and radio and got surgery with the temporal ileostomy, with which I was able to have intercourse. The relationship ended after the reversal was done due to different issues.
Then I have been able to have a couple of relationships that ended not because of cancer but because of whatever.
I don’t know who told you that, but I am not sure that’s true, and not sure why that person told you that either.
I don’t wear a colostomy, but I might in the future if I can’t manage the current issues I’m having, and I am not worried to find some one, you know why? because true love is true love, and nothing should matter, having a bag is just a different way of doing things, that’s it, your soul is your soul and you are who you are because of your soul….. hard to explain…….
Anyways Vickie, take care and if you want we can chat some more i here.
Cheers
Tony
The funny thing is that whether you have a colostomy or an ileostomy, you’re “doing” the same thing that everybody else is doing – just in a different manner. It is a tiny part of what goes on during the day. I have no difficulty talking about Gastro issues because I’ve had them for 45 years but I guess for some, it’s still a taboo subject.
my daughter is 19 and 6 weeks with a bag. She is having problems gaining weight. She’s eating a lot. She can’t have the J loop done till she puts on weight. Do you have any suggestions? Thank you Lee Ann
You are so right about accepting your self! When I got home from the hospital at the age of 83 I stood in front of the mirror after nameing my stoma DOOHICKEY and said we will do this together till death do us part! And my husband of 63 years loved me more than ever. God bless him😍😍 PS I’m so happy to have found this site, thank you for all your imput👍🏼👍🏼
I have Crohn’s and that in itself was a problem in my marriage which ended in divorce. A couple of years after the divorce I ended up having a permanent ileostomy. It’s been 13 years or so and I’ve been single ever since. I’ve been in a couple of VERY short lived relationships because as soon as the whole ostomy thing came up they couldn’t deal with it. So, I tried a new approach and in the very beginning stage I revealed that I had an ileostomy. Of course, this usually lead to long explanations and then “friendship” that faded as I watched the other person march happily into a relationship with another woman. I’ve pretty much gone back to resigning myself to being single and just letting it all go. My experiences have not been positive like some I’ve read but I try to keep a “what will be, will be” attitude.
Ditto same xx
I guess it’s different when you’re dating. I’ve dated men who were intelligent, educated, and definitely interested in taking our relationship to the next level. When I told them about the ileostomy, even when I explained that I have a cover that goes over my bag, basically the answers were, “I have a problem with that.” I never heard from them again. Yes it’s better to know that ahead of time. The funny thing is, in my dating life, I’ve dated men who had erectile dysfunction and I worked around that without making them feel self-conscious.//I’ve had my ileostomy for six-years and haven’t had sexual relations once. I enjoyed my sex life prior to the ileostomy; I have no hesitation about being seen naked, although I will be uncomfortable if someone tries to put their arm around my waist (which is going to rest right on the bag.) My bag fills up quickly so that when embracing, I’ve always kept my hand over my stomach – not protectively but so that a man wouldn’t feel the squishiness. I am 59, dating men in their 60s. I don’t see my sex life changing, meaning I think my best years are behind me. That’s a shame because I considered myself a sensual person.// I hate everything about this ileostomy. I dread every time I have to go to the bathroom to empty my bag (which is almost every hour.) I hate the fact that I had to change the type of clothes that I have to wear now. I can’t enjoy swimming the way I used to because the water compromises the adhesiveness, and one of the most important things to me – intimacy – is probably not in my future.
Hi Christie,
Have you tried using imodium? to slow down the output and therefore the time between changes?
T.
I’ve used Imodium ad nauseum, to the point of nausea (literally!) – it just tears my gut up and it does not stop the output into my bag. If I said “changing” my bag, I meant “emptying” my bag every hour or so. Thanks for your suggestion though!
I have. Imodium does not slow down my output.
I’m 30 yr old male and agree with Christie. The people who come on this site (as well as the doctors who talk us into the surgeries) and give us these lies and false fantasies (even if with good intention), are actually doing a huge dis-service and making us feel worse by discrediting reality. Don’t believe their lies!
The reality is, you CAN NOT do the same activities you used to (I can think of 10 things right off the top of my head I can no longer do), you CAN NOT wear the same close you used to (such a statement is simply ridiculous.. when your bag fills up to the size of 2 softballs while you’re standing there talking to someone, your t-shirt is going to show the bag to everyone in the room, and may even cause it to explode all over you and the floor), you CAN NOT date or have sex ever again (unless you are willing to go through A LOT of emotionally devastating rejection and also happen to get VERY lucky and find someone willing to overlook it), etc. Yes, having aggressive Crohn’s was a lot of pain and suffering; and it’s nice an ileostomy bag helps with that, but it’s not all fine and dandy. The bag brings with it a whole new set of suffering, just a different kind.
Rich – I agree with you! 6.5-years after my ileostomy, I still dread going into a bathrom because it never means that I can just simply urinate. To empty a bag in a public bathroom that doesn’t have a sink in the handicapped stall is humiliating. I worry every single night when I go to bed that I might turn on to my stomach and crush the bag, which has caused breaches. I can no longer wear tops that tuck-in; dresses are few and far between. This past summer, 6-years after my surgery, was the first times I wore white since the surgery. I have had breaches in front of people (including while I was teaching a high school class.) I still haven’t managed to master getting in a swimming pool and keeping my adhesive dry, which is sad because I have a pool and I live 10-minutes from the beach. Intimacy as simple as spooning is affected because the abdominal area is pretty much off limits. Because I live in a tropical area, I had to stop jogging because my bag won’t stay adhered to my body due to the humidity. That in itself has affected my mood. Whether I’m in the house, in bed, on the sofa, in the car, or in public, I find myself frequently putting my hand on my stomach “just to make sure,” similar to the way I touched my belly when I was pregnant with my four children. I’m always checking for a disaster. There could be worse things – cancer – but it has changed my life and the image of myself in a negative way.
I just read your story, I want to talk to you, I just am going through the same thing, now WFT! The cannot be the only ones, I want to have sex, good sex!
I’ve had an ostomy since the mid-1990s and I still have yet to accept it. I’m a middle-aged male with strong (STRONG) desires for intimacy, yet haven’t had sex in over twelve years. Not by my choice, unfortunately. It doesn’t help that I’ve suffered from major depression since my teens, and the whole positive self-image thing is now completely non-existent. Most of my waking hours lately seem to be filled with regret and thought of “why me”. Seems to me that folks with most other major medical issues can feel some sense of dignity in their conditions. Ours is simply embarrassing. I wish I could say that I’ve been able to work through the anguish and rise up to say that I’m stronger due to what I’ve been handed and that I can feel positive about it… but that would be a lie. I just want to live and love, which doesn’t seem too much to ask, but what do I know. It really crushes one’s soul when it feels like joy and happiness are things of the past. I wouldn’t wish this hell on anyone. I can only hope that I’ll find some semblance of peace (and maybe even one more opportunity for intimacy) before I’m too incapacitated to enjoy and appreciate it. It would be really great to have reason to smile and laugh and feel content again.
Hi read your story.. sorry to hear this.. maybe we can swap emails?
I haven’t found a man yet who is willing to deal with the ileostomy bag. My surgery was in 2010; luckily I’d had great sex in my life prior to that, so I have something to remember. :o(
I started to see and build a relationship with a woman who I felt I had a strong connection with. She was the fist lady I had seen romantically for many years due to my illness and long spells in hospital. Everything went well and after a few weeks I knew I could trust her enough to tell her about my condition and permanent ostomy. It seemed to be fine however two days later, three days before Christmas, she made it clear that she did not want a relationship with me due to my health issues.
At the time I was upset and felt worthless however looking back she did me a massive favour by being honest. It did knock my confidence but not my spirit and I still hope to meet my soul mate and best friend for life.
Same im very lonely woman xxx
I dated a man I met on another ostomy site, we both.had iliostomies. We talked and laughed a lot. It was so great to be able to ask him what he thought and he could say anything to me. That was 2 years ago and I still miss the closeness we had.You don’t. find that just anywhere. Don’t. Be afraid to date, but do explain things after a couple dates…the ostomy helps weed out the assholes..lol, this is really true, if they can’t. understand or want to understand you don’t.want them. A true adult will at least sit and ask questions and try to understand. Don’t. be shy..heck…show it to them…you don’t. Have to undress…just be sure its. not a clear one thatyou are wearing. Lol
Although I agree with you, three of my four adult children won’t discuss my surgery and definitely don’t want to see my stoma. That would be my three boys; my daughter and my grandchildren have no problem with it. The boys act like it never happened and change the subject if I bring it up.
Well said Janice. Sadly my relationship is no longer the same. I’m looking to change ship asap.
Love your site. IM 4 years into my colostomy. Husband passed away 2 years ago. I’m 60 and want new life and love. Alot of death in my life in the’s few years. Son and grandaughter to suicide and husband cancer. Anyway I’m ok with greif, but feel un-loveable. Not ashamed of my new friend, but don’t know how to move forward. Any advice. Ty so much
Can can relate to some of your past. Lost wife of 40 years marriage 4 months ago. I also have ileostomy .
I suffered from severe UC for 9 years. My (ex) husband was there in the emergency room and subsequent five day hospital stay when I had a major flair. Dehydrated, malnourished, high fever for weeks, etc. It was then that I saw how uncomfortable he was with my illness, rather his true feelings of “in sickness and in health”. A year later, due to other circumstances in our marriage, I left him and filed for divorce. Two years after that I took the plunge and opted for a total colectomy resulting in a permanent ileostomy. It’s been two years and I’ve accepted my new normal. I’ve tried some online dating (mostly pre-surgery) and was rather unsuccessful. Although looking back, I don’t feel I was truly ready to begin a new relationship. Now, I am comfortably single and enjoying life. I just sent my youngest off to college and am taking time for me. I love to hike and just starting climbing at an in indoor climbing gym. If I find someone in the future (I’m 56) to begin a relationship it will happen. I’m hopeful that the next stage of my life is filled with love, friends, experiences and interconnectedness. I’d welcome intimacy, too, but it’s not all that I’m looking for. Thank you for your blog and sharing your story. It’s helped me tremendously accept my life as it is and embrace who I am.
“But I don’t think my husband is some special breed of person who is willing to go through all of this. I think he is a good man and an honest man who takes his vows seriously. When he said, “in sickness and in health,” he meant it.”
— This is a special breed of person. They are out there but they are certainly special 🙂
I have had 3 love relationships in my life. First ended after a few years due to alcoholism and my being way too young to understand real life. Second marriage lasted ten years. I dated him a few times, then explained abput uc, and my surgery. He was nervous about it, but I just said ask me anything…no matter how blunt. And he did. We then were intimate and got married 12 months later. Our divorce was my fault as I looked elsewhere for attention, but we remain good friends. My current relationship is going on 16 years and here too I explained my health and the surgeries early on. He is 15 years my senior and has lived real life…had losses etc. He never had any issue. We are intimate. Not to be weird, but he loves sex no matter my ostomy or size etc. Find someone who loves women, who have not lived a sheltered life. They know life can be hard and now live life to the fullest. I am the happiest I’ve ever been…I am 51. Being happy can happen at any age. If there are things that bother you re istomy…there are solutions. For example sexy underwater which holds everything in place during sex, special tape to secure ostomy in pools for swimming, look online or ask an ostomy rn regarding issues.
There is someone out there for you…it does take trial and error choosing the right one but it does happen!
Thank you for your story. I commented, but meant it to be for anyone who hasn’t found love yet with an ostomy. Thanks.
Hello
I’m 60 years young with a ileostomy that happened when I was 17 yrs old. I had UC that was undiagnosed Crohn’s. They didn’t know much about Colitis back then or TNF and our immune systems. I had three surgical revisions after the first total colectomy, all of the usual issues and complications. I was 24 yrs old when everything resolved and I stayed healthy for 32 yrs, no medication, healthy and strong. I had many relationships up until age 35 that ended for many reasons. Some casual encounters that were awkward because of the bag and yes rejection. I met a my true love, friend and soul mate at 36 and married at 39. We were together for 25 yrs. She became very sick the last 10 yrs together and died 2 yrs ago now.
Trying to summarize here. There will be relationships with love and acceptance. Maybe even rejection because of your health or physical appearance. The person who has the capacity to love you unconditionally will be the one to look for. Even then life holds no guarantees. Unconditional Love seems to transcend most of life’s experiences.
I lost my colon to c. diff. long acute, 8 weeks in the hospital, almost died several time that was 2012, in 2014 lost my husband to suicide after a brain injury, I am ready to move on with my life and find love, but in the mean time, I am an attractive 58 year old woman, my husband and I were very sexual during our marriage, I miss that part of myself. I have not had great sex in over 5 years so since ileostomy. I have a male friend opportunity for us to be sex -friends, We send flirty text and are just waiting for a chance, but I have not moved forward because of my bag. I want to so badly he is a hot younger man. Seriously, It appears I can as anything here, thank god I found it because it has stopped me from crying (big ugly crying) I want to have sex with this man, I want oral sex, can anyone tell me is it gross giving oral sex to a woman with a bag? (I cannot believe I am writing this, but where else is there to ask??) I cannot be the only one wondering? I read the comment above about the young girl who is feeling all sexy and thinks she is slutty!? NO WAY! YOU GO GIRL!!!! I just really like this guy, is there any way he would not know? He is totally into me, I need help? do this wraps really work? I am dyeing here? I am still relatively young, I have lost so much, am I NEVER to have sex again, I want a new relationship complete with all components. HELP me????
Not sure if my last reply went through. the abbreviated version is skip a meal, empty your bag, make sure your bag is relatively fresh, and look at this particular website that sells wraps: http://www.ostomysecrets.com – Go to UNISEX, and choose wraps. I have a small and a medium; both of them have pockets which do not keep my appliance hidden, so I fold my appliances in half when I’m swimming. They can be used for water sports, or intimacy. At least it keeps everything in place, and not visible. Also, make sure you’re wearing an opaque bag.
What I said in my first post which doesn’t seem to have come through is that my long-term relationship wanted oral sex, would have a bowel before he came to bed, but not shower. it was unbearable!// I am not malodorous, so talk about hypocrisy.