Intimacy Challenges After Surgery: Seeking Advice on Healing and Relationship Support

Mar 08, 2018 12:25 am

I am new here. I just wanted to introduce myself. My name is Chrissy and I am a mother of 4, just turned 40. A little about me... Last year I was diagnosed with cervical cancer (early stage). I had to have a radical hysterectomy (Jan 5, 2018). I ended up having complications afterwards. Although I was told beforehand that recto-vaginal fistulas were rare, it was possible... I was that unlucky person who got 3 fistulas. The surgeon nicked my colon during surgery and had to repair it. So that repair healed to the vaginal repair and left holes. I was devastated. Four weeks after the radical hysterectomy, I had to have an ileostomy (Feb 6, 2018). This whole ordeal has really taken a toll on me emotionally. I have cried almost every day until recently. This ileostomy is temporary, but it still sucks. The doc said about 8 months to see if the fistulas heal on their own. It's only been 4 weeks. Sex has been an issue. My boyfriend of 1.5 years shows no interest. I can't have sex due to the fistulas, however, there are other ways to please one another. Still... nothing in 2 months. He won't even look at my stoma. I have adjusted to it well, better than I expected. I'm certain he is grossed out by it. I even bought the cute black lace wrap from Ostomysecrets. I keep my bag clean. No odor unless emptying it on occasion. I even rinse my bag out every time I empty it. I have never felt so gross. I am not really sure what to do at this point. I know I am not alone. I am curious to see how others handle this situation.

Mar 08, 2018 1:47 am

Hi there, Chrissy! I am Michael and I feel absolutely disgusted and appalled that your boyfriend won't look at your stoma because it is a part of your life right now!! If I were your boyfriend, I would cherish every moment with you, sex or not! Feel free to text me!


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Mar 08, 2018 5:09 am

Thanks, I honestly think he just can't handle those types of things. He just tells me he doesn't want to hurt me and that I need to heal. It's been a long road for me, but I am cancer-free. This ileostomy sucks, but I have adjusted to it and I am doing well.

Mar 08, 2018 10:08 am

G'morning angelkisses, first I'd like to welcome you to the site. I'm so glad that the cancer is gone. I have never had fistulas, but I do have an ostomy. You have an ileostomy and I have a colonoscopy. Which are both lifesaving surgeries, we got a second chance. Angelkisses, you also have something to look forward to: a reversal. There are some of us who will never get that chance. Yes, mentally it is rough. In time, you adjust, but everyone has their own time. As far as your partner, who really knows? You're struggling mentally, perhaps he is too. I even understand the sex issues. I'm married, and when I had my surgery, my husband of 33 years wouldn't touch me. But I had to keep moving. It took me some time mentally to even accept my situation. I haven't had sexual contact in 3 years, so truly, I understand your feelings. Take this time and reflect on you. Do you!!! The difference is the plumbing, you're still that person he knew and loved. Time heals all, and in time, you'll be okay! Hang in there! It does get better. This is your second chance... do you!!!

Wish you the best! Angelicamarie

Past Member
Mar 08, 2018 11:31 am

Hi, ditto to what I am saying. My wife left mentally and got a stroke. It's been 3 years since sexual contact. We have become more energetic and stronger against birds and bees. The whole thing makes everyone go into survival mode. Plumbing blood vessels take 6 to 10 years to come back. In a way, we're oral, if you know what I mean. Jerz.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister
Mar 09, 2018 3:45 am

Love is love. I'm just out of my bag now for a short time. I'm kinda on both sides of this. Ya, stomas are trippy for sure. Gross? Naw. Different. Life-saving is the thing us and our loved ones must keep in our minds. I'm sorry your loved one is having a hard time with it. BUT, like I've said to mine, it's on me. Not on them. On me literally. I don't know exactly how to help. I'm sorry, Chrissy. It will be kinda over before you know it. Love.

Mar 10, 2018 7:34 pm

Thanks for your post and I am sorry you are going through so much. Take it one day at a time.... sometimes it takes time for the patient and the loved one too. In the beginning, I was pretty grossed out too.... always dealing with BM.... emptying the pouch 5 times a day. Now I take it like anything else... time to go to the bathroom. Just remember, this is only temporary for you. Give yourself time to heal and feel better. You will be reversed and life will go on. My stoma is with me for life. It gave me a second chance as I almost died 5 years ago. I love my stoma... most of the time...LOL. Good luck and keep posting your questions. We are here to help. LadyHope

Mar 11, 2018 5:19 pm

Hi Angel, you've been through a real ordeal, between the illness, the cancer, the surgery, and the recovery. In an ideal world, a partner, be it a boyfriend or spouse, would be there to love and help support you. But they are human as well and may or may not have the mental or emotional fortitude to deal with the issue. Either way, it's sad. I've had my ileostomy for more than 50 years, since I was a kid of 15, and although I didn't date much, I did meet and marry a guy who also had an ileostomy, as well as active Crohn's disease. When he had attacks, I was there, cleaning up the mess, helping him change, and doing all I could to make him comfortable. I'd had Ulcerative Colitis, so when my colon was removed, I was basically well. But when I was 9 months pregnant with our first child, I needed help in changing. Would you believe that he actually refused!!!! I couldn't believe it and was very upset, angry, and felt rejected. I wanted to be able to lie down and change and needed him to help me clean up and position the wafer appropriately. Instead of helping, he hung a mirror on the toilet seat so that I could see my stoma (which was now under my belly) and go on from there. I was 24, and he was 32... and we were expecting our first child, so I didn't hold on to my anger... But that started me on making lists of all the things he wouldn't do... to help... Help with dinner, after the baby was born, wash dishes... change diapers, do baby laundry (we didn't have a washer and dryer). He was not really a caretaker type, as I was, but he did many other things for me, us, and around the house. My anger dissipated, realizing that what I was asking for just wasn't in him... and it was useless to fight about it. By the time baby number two was on the way... I made sure that he knew that I couldn't do it all, so he became more responsible and interactive with our first child, now two, and actually helped with our newborn, so I could bathe/shower our older boys. Would you believe he never bathed either of them until they were 3-5? He claimed he didn't know what to do. So I told him to soap up two washcloths, put the boys in the shower, and let them wash each other...

But your issue is a bit different. You're craving emotional and sexual intimacy, and your boyfriend is holding back... or ignoring your needs. If you're not in a position to go for help with a therapist, perhaps you can have a non-accusatory conversation with him, saying that you know it's a big adjustment, but you miss not just the sex, but the closeness and intimacy that you once had. You don't even have to do anything sexual. Perhaps he needs time to adjust and accept... and isn't paying attention to your feelings. When I became pregnant with our first child, my then-husband was so fearful of hurting the baby that he planned (in his mind) to refrain from having sexual intercourse until I gave birth... but he hadn't told me his decision. When I heard it, I didn't know whether to laugh or cry. But I said if he persisted, that by the end of the 9 months, I'd be ready for a divorce, not the birth of our first child. And then we talked and compromised, and I accommodated his feelings that were based on fear. So I wish you the best and hope good communication helps you and your partner. Stay in touch and let us know how you're doing. Best regards

Mar 11, 2018 8:37 pm

I'm sorry your boyfriend can't accept the changes in your life. A lot of this is temporary, but you may need to find someone else. There are a lot of able-bodied people out there who are compassionate and look past these things. I wish I lived closer to you. I would date you in a heartbeat! You are a very attractive woman!

Past Member
Mar 16, 2018 1:04 am

Hi Chrissy,

So sorry to hear your story. I have played this scenario in my head many times, in which I am the non-ostomate and my GF has an ostomy. Question for me is ... Honestly ... no crap .... how would I react or feel if my GF had an ostomy. Would I be scared of hurting her? Would I be disgusted if she had an accident ... if she showed me her stoma?? This thought experiment made me have some compassion ... even a bit of pity for the person who suddenly has a spouse or bed partner with a stoma. I took off all my clothes and my ostomy bag and stood in front of a long mirror and considered the situation. It doesn't freak me out these days but .... remember the first time you changed your bag ... yourself, not a nurse ... how did you react when you first saw your whole body ... your stoma looking back at you ... were you scared .... not sure how to react to it. Been there ... done that Chrissy.

I wrote a blog recently about finding an Osto Lady to hang out with. It makes a big difference when both people have an ostomy. I may be in the minority but I think I understand the fact that non-ostomates will invariably be totally freaked out when confronted with a plastic bag full of shit or even an empty shit bag!! I can have some sympathy for people who can't handle it .... especially to get up close and personal with the actual stoma or even the bag!! It is pretty scary when you are confronted with your partner's intestine popping out of your lovely (I'm sure lol) belly. To be honest, I would say that you should not let him see your little gutsy friend ... your stoma, not a pretty sight, ever!! That view is very scary for non-ostomates.

I would suggest starting with an easy task for your scared (justifiably?) and probably embarrassed BF. Go easy on him and just cuddle up as close as your baggie allows .... with as little clothes as possible but enough coverage to keep your baggie out of his racing imagination. He may be afraid he will hurt you somehow? That you are now a delicate piece of glass .... shattering if mishandled!!

Don't be too ambitious at first. You should probably explain that you are not all that fragile!!! You won't break like fine bone china if he hugs you!! He will have to get used to those funny noises and farts lol .... Hey look on the bright side ... Your farts don't smell ..... Ever!!! lol as long as you keep that baggie closed!!

I hope he comes round and accepts it. I scared myself when I looked in the mirror naked ..... still do!! He will figure out that the woman he cares for is still there .... no different, except for a little extra baggage.

I hope you take my thoughts as they were meant .... musings on a very difficult road to "normality", a new normality!!

Best wishes Chrissy and hugs from Magoo XO

Mar 18, 2018 7:22 pm

Thank you for your reply. It's been rough. I did find out that it's the rectovaginal fistulas that worry him. Which I can understand. My issue is that there is nothing coming out of those holes anymore. Even when it did, it wasn't a lot. I admit, that's gross. I wouldn't expect him to want to perform oral (since I can't have intercourse). However, that's why I have the temporary ileostomy. The doctors want to give this time to heal on its own before doing surgery. I guess I just don't fully understand what the issue is now.

Like your husband, he doesn't help with anything stoma related. He wouldn't hold a mirror for me either. My 15-year-old daughter had to. Since then I bought one that I can just sit in front of me. I have adapted to this ostomy better than even I expected. I keep everything super clean and as odorless as possible. I don't think he can handle all of this. He says he loves me and he does make sure I have everything I need. I just wish he didn't think I was disgusting.

Past Member
Jul 27, 2018 1:27 pm

Hello to Cincinnati, by way of Maine. I love driving on 71-75, then you crest the hill, and see the skyline..........great view, especially at night!!!

Oct 08, 2018 6:40 am

Hi... I can help you in your private feelings. I am also alone... I can give you a soft kiss....