How Has Your Ostomy Affected Your Social Life?

I need to know if anyone else has changed because of their ostomy. I used to be on FB every day and had lots of friends I talked to and joked with. Since my operation, I have stopped it. I can't explain what it is, but I have changed. Even my friends have said something.

Hi Dan,

Can't help you with this one as I don't have FB.

Dan,

I have always been a relatively private person, and have never used facebook, twitter, instagram or any other forms of social media.  I was, however, very grateful to find this site where people are helpful and more than just curious.  They are respectful of any and all questions you might have, and have always tried to be helpful with issues, different products, treatments, and experiences.  Perhaps the difference you are feeling in yourself has to do with the limited experience that most people have who are not in the ostomy community. Perhaps your feelings of distance are because you are not sure of people's acceptance and understanding.  If you had many REAL friends before your surgery, my guess is they would still be there for you.  If they were merely facebook acquaintences, you may find yourself gravitating away from mere curiosity and uninformed judgement.  Acceptance, of oneself as well as by our peers is one of the factors that make this site so successful.  We all want to be accepted for who we are. You always will be, here at meet an ostomate. But that should not be a pre requisite for you to interact with others outside this world.

Peace

Nancy

I have been on FB for many years. I never post about my colostomy. If I do—I will private chat with my friends. Good luck!

I have a FB account, but I try not to comment on my ileostomy or other health issues (most wouldn't understand), and I feel it's better not to. It is normal to feel a little disconnected from others due to this assault on your person and self-image. Your only change is a minor physical one, "the addition of a bag." You will get through it. I try to use humor and look on the positive side of it (you're on this side of the dirt, continuing to please, entertain, and yes, annoy others to your heart's content). Don't let the "bag" influence your outlook on life.

How to Manage Emotions with LeeAnne Hayden | Hollister

Hi Dan, I'll say "ditto" to what others are writing. Social media, like Facebook, is just that—social. We may think we're making "good friends," but until "tested," most of them are nice acquaintances...people to chat with, share day-to-day experiences. In some ways, it can enrich your life, but I found that over time, my "real friends," those who I see in person, and with whom I socialize, who know me, and my family are the real friends.

You've been through a big change in your life, and while you may be adjusting to life with an ostomy, it is a challenge, you may not want to share life-changing events "in public," in a superficial manner. With that said, while this isn't Facebook, there are people here, from around the world with whom you may have more in common with at this time. It's not "one or the other"...It's a matter of choice, of who you'd rather confide in, and connect to. You may go back to Facebook at some time. For now, be kind to yourself, and do what makes you feel good. Best regards, Marsha

I hear you all and I agree. But it is ME who has changed. Life just sucks... so many changes to get used to. Can't even go out much in public anymore unless I wear a coat to cover the lumps up. But with summer here, I am really screwed! Thanks, everyone.

Dan,

Do those changes you made redefine you? Do those changes directly impact others? Those lumps, why do you have to cover them with a coat?

Some of those changes do impact my husband, but he helps me overcome them with encouragement and support. I have to be the one to make them happen.

I believe we do change somewhat to accommodate our situations, but we are still being true to who we are. Some changes bring out the best in us and others not so much. We should adapt and become stronger in whatever situation we find ourselves in.

Life is not easy, fair, or the same, but we still have life and we should at least try and be the best "me" we can be. It takes time, one minute at a time, or one hour, or one day, little by little we need to take steps to do and be who we are.

We're here to encourage each other to move on and live life through our difficulties and successes. You will have success if you choose to, one small step in the direction you wish to go is a success. You can do it, one battle at a time.

Hi Dan, I agree with Marsha and MRS.A... speak, ladies!!

Hi Dan

Just be yourself; everything will work out. I've been in your shoes.

I used to take everything to heart, but I learned

just to shake it off.

Vickie

Hi Dan. My heart feels for you as I read your post. I am not an ostomate but the wife of a wonderful man who has a colostomy. Just speaking from his/our experience... I don't know if your ostomy is new to you or not, but when my husband got his first ostomy (I say "first" because he has had three), he didn't want to eat out anymore, he didn't want to go to work, he didn't want to walk the mall. The doctor offered him antidepressants. He didn't want that. He didn't feel he was depressed.

He decided to give the antidepressants a try... We started going out in public to noisy restaurants at first (noisy restaurants because his stoma made a lot of noise in the beginning and he didn't think he would ever be able to go out in public). We walked the mall at odd hours when not many were there. In time, he started feeling a bit better about going out and socializing. It is still a work in progress. He is really starting to feel better about himself and life with an ostomy. My guess is in time you will too.

One thing that made a big difference for him in feeling better about his looks was a "wrap" from Ostomysecrets. He feels it holds his bag close to him without being too confining and it smooths the look under clothes. He has changed a lot of his shirts from T-shirts to button-up shirts.

Maybe something I shared with you will help you. Everyone's journey is different but also similar.

Be well :-)

Hey Dan! I'm not a physician, much to my mom's disappointment, but it sounds as though you're suffering through depression. I embrace my colostomy with a passion. My life has become my own again and I love it! Lumps? Yes, but who really cares? Facebook? It's a social tool to share as much or as little as you choose but I fail to identify it as a personal confessional - lol. Start your own personal revolution! Find enjoyment in a day and then expand that joy into other aspects of your life. You are NOT your ostomy. It merely allows you the opportunity to re-find, re-experience re-enjoy your life! Wishing you only the best - Steve. 

Those wraps have really helped me! It definitely helps to make things less noticeable.

Also, I understand how it would be easy to pull back. I wouldn't let anyone except my immediate family visit me in the hospital. And only my closest friends know I have had an ileostomy. I figure that's my private business. Maybe one day I will be more open about it, but I really don't know.

I decided 13 years ago when I was diagnosed with Crohn's disease that I wasn't going to let it run my life. And recently, when I was medically forced to have this ileostomy, I had to make that same decision again. Some days are easier than others and vice versa. And I'm sure I will face many more hard days. But I want to live my life and be as happy as possible. That is obviously not when I'm dealing with this bag, but I refuse to allow this bag or this ileostomy to run my life!

Best of luck to you! Keep your chin up. And live your life the best you can!

Hi, Dan! I really feel for you! I've had some social change as well. My colostomy is supposed to be reversed and I just keep thinking of that. The whole ordeal of the operation and the bag is very depressing. As time goes on I'm better, but I totally understand what you're saying. The whole thing is really a life changer and stress-adder. Right after the operation I just wanted to go back to "normal". I'll be thinking about you. I do think that some social withdrawal is normal. I think most of us go through some depression and anxiety, etc. I remember reading about it in one of the hospital's pamphlets, so I guess we're both "normal" to experience this! LOL.

With time, all will settle down and our "new normal" will develop. Good luck to you, Dan! We're all in this together!

Hi Dan. I have my own opinions relative to FB and the other social media options and prefer to keep them to myself. I think that’s consistent with my MO in all areas. I think sharing is one of the most important things in life and helping others is even more rewarding. I don’t, however, offer my bio too quickly.   Most folks wouldn’t give a crap anyway. I would be happy to offer my successful experiences to anyone in need of a remedy to a similar situation to theirs.
I think we’re all somewhat different after major surgery leaves us with a plastic appendage and a different bathroom routine. That’s just the physical part. My psychological and emotional scars were worse. Who wants to know this unless they had similar experiences? Why would I expect anyone who has not experienced similar stuff to help me feel better? What would I expect from my FB acquaintances?
Listen, Dan, to these wise, caring folks here and you’ll feel way differently about some stuff; hopefully, way better.
Thanks for sharing,
Mike

Hi Dan, sorry you are having a difficult time. Everyone comes to this new normal of living with an ostomy in their own way and time. I have had Rosie (my stoma) for 4 years now, and I can honestly say I am blessed to have her. I am living a very good life. It truly does not do you any good to look in the rearview mirror; rather, keep looking forward to the opportunity of living every day. I do not use Facebook, but there is no reason you can't. I don't think Facebook has a prerequisite that you must share all. You may be physically different now, but you are still you. Dan, my mother had a saying that is very true: "There is always some poor bugger worse off than you." I was born and raised in Scotland, haha. I hope that you will get the confidence back from the truly caring people on this site sharing their strength with you. Good luck and God bless. Gail aka p.s. That was rearview mirror, ha.

Hi all, Dan, I know what you mean. I used to go on FB all the time, and now, after my recent surgery, I don't bother much with it or go to YouTube or other sites. I would rather read a book and take a nap.