Coping with Touch Aversion After Surgery

Hi Everyone,

After suffering from digestive issues since birth, I had a loop ileostomy in September 2024 at the age of 37. Since the surgery, I have developed a physical dislike of being touched; hugs make me uncomfortable, and medical appointments make me cringe. I'm aware it's early days—Rome wasn't built in a day—but I can't see how I can resolve that. I feel like I'm never going to have intimacy ever again. Did anyone else feel like this? How did you get past it? I've never been body confident, but this has brought new levels of anxiety, and it's stopping me from rebuilding my life.

It is early days and all, but it sounds like you are struggling with more than just getting an ileostomy. I'm no expert, but this seems like something that you will need some therapy to get past. You've already lost a lot of time to being sick; don't let any more time slip away. You deserve to feel comfortable in your own skin.

Good luck!

As long as you're here, stick around. It may help to hang out with a bunch of unapologetic ostomates. Check out the humor thread.

Hi Kimberley, Susan T said it all really well. Nobody is in love with their ostomy, but what it truly represents for you is most likely why you're reacting to it as you are, and getting to the bottom of that can help you get past it. Also, remember that it is very early in the ostomy life for you, and things may simply organically change with time, but you can definitely help it along. One thing is for sure: we all understand and want to help.

Thank you, Susan. I am waiting for therapy to challenge how I view myself. My stoma seems to exacerbate my insecurities and self-worth.

I am finding humor a relief, and thank you for your advice; it's greatly appreciated. I am feeling very alone in the world right now and finding the site helpful. ☺️

I understand your concerns, etc., and I won't lie; there will be dark days to begin with as you navigate your new norm, but there is light at the end of the tunnel. I'm on year 27 this September since having my ileostomy, and although for a long time I resented my body because of it, I've now accepted that without it I wouldn't be here. It's hard to begin with, but you will get through it, and there will be plenty of support on here. And I'm only a message away if you did want to talk about it.

Words of Encouragement from Ostomy Advocates I Hollister

Anxiety can hit hard with having an ileostomy because, quite frankly, it's not pretty, and there are tough days. But you deserve a happy life, and I agree with others that therapy would be helpful. Life was meant to be enjoyed, even in small things. I wish you luck and wish you the best. Coming to this forum will help you know you are not alone.

If you had issues before getting an ostomy, I'd say the ostomy isn't to blame for your insecurities about yourself. Maybe it's something new to use as a reason, but not the root cause.

Thank you. It's really appreciated. I went in feeling so positive; it was meant to be life-changing, but it's just not gone to plan, and I didn't expect to feel like I do. It's better than it was. I don't feel so alone.

You are not alone. To one extent or another, many of us know where you are coming from.

It will take time to reprogram your thinking, and we will be here to listen when you need to vent.

Kimberley, 30+ years ago I worked at a farm in Kentucky and became good "friends" with a very attractive young lady. She had dated a co-worker for a while, and the whole guy office group could never figure out the attraction. There was nothing remotely attractive about John. So one day I asked her why. She laughed and said John didn't have a self-conscious bone in his body, and she was attracted to his confidence. John had figured out that the way you project yourself to others is what they see, not that person at home looking in the mirror and picking apart their bodies.

Hey, I'm no John. I have my hang-ups. I've made friends with ostomy, though of course there are days I hate it. Because my medical insurance grants me a free membership at my local gym, I've worked out like a demon since joining about 5 months ago. Though members have told me how good I'm looking when I reveal my age, I still can't bring myself to wear a body-hugging t-shirt in public. As I said, I'm no John...but I'm trying to get there.

You're attractive, Kimberley. Love the parts of you that you like, and make friends with the parts you hate!

Hi Kimberley,

I was 38 when I had my colectomy and loop ileostomy. It takes a toll on the whole person. Often we talk about what falls under the mental health umbrella separately from the physical issues. But the mind can't be separated from the body.
Did you have any other sensory sensitivities before?

We all know people like John, popular with the ladies without any good reason on the face of it. Deep pockets help, but cannot be the only cause. An elusive quality, perhaps a happy and gay appearance, and being a good conversationalist without a critical word for anybody helps.

Hey,

Thank you for your reply. No, before my op I didn't have a problem with being touched by people I knew. I was actually a really cuddly and affectionate person, but now it just makes me feel uncomfortable.

Thank you.

I have great admiration for people who manage their stoma successfully for many years; it feels like I'll never get to that point. Things improve daily. I'm not friends with my stoma, but I also don't hate it either.

Hello Kimberly

I think what you are feeling is not uncommon in the early days. Experience tells me you might just have a different perspective down the road a little, and I hope you do.

Hi Kimberley. I have had problems with intimacy and physical touch for as long as I can remember. I've had counseling and discovered that I have a deep fear of rejection. I won't go into the experiences that caused it, but it has helped me to know why. When I first got my colostomy last May, I was obsessed with keeping it hidden. I became a prisoner of it. Today I am able to go on with life. Keep sharing with us. It helps us too. The great thing for me about this site is that I can share about anything and get help and advice and a reality check when I need it. I wish you the best.

One of the wisest men I know of said, "The journey of a thousand miles begins with a single step."

-Gandhi

I'm not friends with my stoma either; he or she 🤷 keeps shitting on me... I put my time into friends that don't do that 😂.

On a serious note, though, love this from a post above.

Love the parts of you that you like, and make friends with the parts you hate.

That made me laugh 🤭. It seems people aren't being honest when they say humor is one of the best ways to manage and view things.

Thank you 🙏

You're right, Brian, confidence has been attractive since the beginning of time. And I think most of us are not wearing body-hugging clothes, but it doesn't mean we can't simply absorb our stomas into our whole sense of selves. Love everything you said, especially your last paragraph.

Hi Kimberley. Old guy here. Many of us have had similar concerns or issues. I'll be honest: the beginning of this new journey is loaded with all kinds of concerns, worries, and problems. We have all been through something. I am no expert, but I speak from personal experience and speaking at ostomy conferences and meetings. I compare it to the stages of grief: denial, anger, bargaining, depression, and acceptance. If you read a lot of profiles, you will see that this is common. If there are ostomy support groups in your area, contact one. Not sure where in the UK you are, but go to https://www.colostomyuk.org/support-groups/, then choose your area. Being in the same room as others is very therapeutic. Even hanging out here, I have found helpful. In closing, given time, while life will never be as it was, it will be as it is, which is: accepting what is, being alive, making new contacts, and getting on with all that life has to offer. Good luck.

Thank you for the kind words, eefy. I know from having read some of your posts and (at least) twice now offered up free supplies that you are a caring soul—much respect!

Hi Kimberley,

I don't like people getting into my personal space, except for my husband - he's the only one who does not make me cringe if he is in my personal space.

I don't think it helps that I am mostly housebound as I'm too ill to go out, and I get tired so quickly that just driving to the doctor, which is an hour round trip, can leave me exhausted for up to a week....

I wish I had helpful suggestions, but I don't even know how to help myself.....

However, I do empathize!!

Greetings from New Zealand.

Hey 😊.

I can kind of relate to a certain point. I never had an issue with my stoma; I understood why I have it, and it improved my quality of life.

But I am starting to feel differently about it, which was triggered by going through a divorce. My ex-wife stood by me when I got my stoma, so she understood it. Now that I'm single, it scares me knowing that if I ever am lucky enough to find someone again, I have to hope they understand it all and explain it to them before it comes as a shock and kills the moment.

I do try to make light of it and joke about it, which helps a lot. It takes time to accept it, which is why I signed up here to find like-minded people who understand the struggles of bag life. I also try to remember how poorly I was before my stoma and try to put things into perspective.

I hope in time it will ease for you, and you feel like it's okay to be touched and it be from someone who supports and embraces the struggles you have gone through. You are not alone; I can promise you that.

Little steps at a time. Don't put pressure on yourself. There's no right or wrong way to feel after what you have been through. But try to think positively and remember you're the same person as before this all happened.

Shortly after coming home from the hospital with my ileostomy, I was feeling exactly the same. As well as the bag, I now had a midline incision that went right up beyond my belly button and was healing badly. I couldn't see how anyone would want to come near me or touch me. A good friend (male) who was visiting asked what was wrong, and I burst into tears and explained. He simply said, "Show me." I lifted my sweater.... He said, "Is that it?" and hugged me until I stopped crying. It was what I needed.

Hey, I've never had a great relationship with myself but was very affectionate before surgery. I would cuddle everyone, but since surgery, it just makes me feel uncomfortable.

Hi Kimberly, I'm a caregiver for my wife's ileostomy, and we're 18 months in. It does get better. One of the things you might want to try is a belt; Coloplast makes a great one, and there are others. They keep everything more discreet, even when getting or giving a hug—just food for thought. Others here are correct; it is an emotional thing. Don't beat yourself up; talk to folks here or someone you trust. Good luck!

You are much too young to give up now. Just give your mind and your heart time to grasp your ostomy. I was 70 years old when I lost my mom, my wife, and my bladder. I got over the urostomy fairly quickly, but it has taken almost 15 years to find another soulmate. Hang in there; it should get better with a little time.

JMF

Look, Kimberly, first off, hopefully whatever caused you to need your ostomy is gone for good. You are young, with hopefully 50+ more years to live a good and happy life. Life is so much better if you have someone you love to share life with. Do not be afraid to just be yourself. Relax, it will get better if you let it.

JMF