How

Hi new friends,

I'm curious how everyone shares about their ostomies and the little ways it affects the way we go about our day. Like is it something you wait to share with people only if it's relevant, and how do you describe it to people? I'm sure people will be more understanding and accepting than I realize now. This is very new for me, so I'm just thinking about things that maybe I don't really need to be, lol.

Also, how do I remove these plastic strings once the surgery wounds finish healing? Do I need to go into the doctor to have them help?

Thank you 💫

I've had mine close to 40 years, so I'm long past caring what anyone else thinks. Bags are just the same as having a colon to me. Family and friends know I have one; if it comes up when talking to someone, it just does. I just say I had bowel cancer and have an ileostomy. If they say, "I'm sorry," I smile and say, "Don't be, I'm not." To be honest, ileo has never gotten in the way of my day-to-day life. Just go with the flow and do what's right for you. Whatever I say, or you say, or someone else says, there will always be someone that says, "No, do this; it's what I do." The only right way is your way.

I totally agree with Ben. Share with someone if it feels right and comfortable; don't if it doesn't. It's a completely personal thing. Some ostomates confide in everyone in their lives, and some only with those who need to know. I have people in my life who know about my ostomy, and others who don't.

As for the plastic strings, I don't know what that is. Sutures that need to come out? Maybe call your doctor or ostomy nurse.

Terry

Hi Mia,

You do it any way you want. As Ben alluded to, most people really won't give a crap about your bag, stoma, or whatever, and those that do probably aren't worth knowing anyway. Think about it: if a friend, co-worker, or even a total stranger told you they had a prosthetic foot or a breast prosthesis, would you really care? You'd look at first, and then when you got used to the idea that there's nothing really to see, you wouldn't even consider it when with them. Personally, I only tell people about my bag when they have a need to know, but I don't go out of my way to hide it when I'm doing things. I was super paranoid when I first got it, but quickly learned everyone has their demons, and most of the time that's of no concern to me. Everyone finds their groove, some earlier or later than others, so you'll find yours. There are no rules or wrong answers, and there's only one you.

;O)

As far as the "strings," I'm not sure what you mean. I had stents in my urostomy, but I don't think you have a urostomy. I would check with your surgeon before pulling anything out.

Living with Your Ostomy | Hollister

I have had a colostomy for about 16 months. From the beginning, all of my friends and family were told about it. For anyone else, it is on a need-to-know basis. None of my friends have asked to see it. As far as how it affects my daily life, other than making sure I have emergency supplies with me when I go out and being careful about my diet, it's no big deal. It has taken me a while to adjust and learn how to take care of it properly, and you will get there too.

An ostomy doesn't have to be "shared" with anyone. Put it this way: in everyday conversation, most people don't talk about their arseholes and bowel movements to everyone they meet, and if they did, I certainly wouldn't want to be friends with them! 🤭

I don't tell people about it. If I need to say something, I just say because of the Crohn's and not mention the ileostomy. I haven't explained it even to my close friends or my niece.

It depends on your personality really; if you prefer to share, share.

If by strings you mean stitches, you best leave it to your doctor to take them out. Don't do anything on your own that you might wish you hadn't. It's better to be safe than sorry.

Thank you, everyone, for sharing your thoughts; they've been helpful to hear. I feel like I'm a mix right now, maybe just figuring out a new rhythm, like a few of you said. Mostly, I just want to focus on taking care of myself and my colostomy. I'm relieved to be able to walk more comfortably as time goes on 🎉

Hi Mia, when I had resection surgery and my stoma moved from the right to the left side, I had staples down my midline but had stitches around my stoma. When I had my last bag/wafer change before leaving the hospital, the surgeon removed the stitches.

Thank you, Ron. I think I'll go in soon and ask him to remove my stitches too. I'd like for them to heal with as few scars as possible.

It's a very personal thing, and personally, I have never displayed the bag or discussed having a bag unless it's been relevant to the conversation.

I would never want to bring the subject up unless one was talking about surgeries or, say, if I was staying at the home of someone who didn't know my situation.

But it's only the same as if you've had a hip replacement; you wouldn't necessarily bring it up as a subject of conversation.

I completely agree. I think because it's so new for me, I felt like I needed to tell everyone, but you're right, it's really not necessary or relevant for most people to know this info. It feels better sharing with the people I choose. I'm learning little by little as I go 💫

Please don't touch the strings. They must be an extension of sutures that will be removed without any hassle in the OT.

Friends and family already know about the ostomy and accept it as part of me. Telling anyone else would be like confusing them completely...though curious, most people have little or no knowledge about an ostomy :D

That's right, I don't share with anybody either. It just seems people don't care.

Only our family and close friends know about my husband's ileostomy. We moved to a retirement community, and only one other couple is aware.

Hello, Peabody here. I have had my ileostomy for 57 years and have shared only with those who "need to know." I never, ever shared it with employers. I was a legal secretary for my entire work life and never shared the presence of an ostomy with anyone I worked with. My experience when I have shared has been mixed and disappointing at times. Nobody really wants to talk about poop elimination. So my advice is not to share except when it is absolutely necessary. Just relating my experience.

Discussing my ostomy is not a public topic in my circle. My very close friends and some family know about my illness and my surgery. I do share my experience, strength, and hope at support group meetings. I feel more comfortable as I'm with my own people—people who understand the daily challenges of living life with an ostomy. Good luck. The early days post-surgery are confusing at times. Once you learn the routine, every day gets a little easier. Take care.

Welcome aboard, Mia. Non-osteomates don't get it. Most get grossed out by it. We have been there and done that! Your question is for an ostomy RN or physician. My former MD had me followed up by his PA, too busy. "I see you have U/C Crohn's and have not had a colonoscopy in a few years. Let's schedule one! Ma'am, you'll have to drive to Mayo Clinic and look through their dumpster!! I pulled up my shirt, and her mouth dropped open.

Hi

I have had bowel cancer. Some people have noticed my bag. What is it? I say it's my stoma bag and bowel cancer too.

It cannot be reversed, and it's not easy, but even now I am still figuring out what I can eat. I cannot eat many green vegetables, and some of my favorite foods I might have to give up too.

Your family, close friends, and stoma group/nurses/doctors might be able to help too.