Making friends with an ileostomy

Hi, I have had my ileostomy for over 7 years now and have been suffering a little anxiety the last few years from it. When socializing with new friends, I find that I can't even concentrate on their conversations as all I'm worrying about is my bag!! Making noises, eating with them as I have a high output, and so have isolated myself the last few years. Does anyone else feel the same? Would love to hear from anyone in a similar situation and how you have or have not overcome it and just to chat with people who understand.

I definitely understand. Lately I've been feeling the same way even though I've only had my (2nd ostomy) for 3 months. I left the room yesterday because I thought it was making noise that others could probably hear. Also, I start work again soon and I'm terrified of problems. We will see, I guess, gotta keep positive.

And then there's that dreaded dental examination—oh sure, I'd love to lay back. Could it be any quieter in this office? I am thinking about asking him to wear the headphones and listen to the music! Yes, those noises can never be trusted... I think it was Bill (maybe not) who said he just says, "I knew I should have eaten breakfast this morning," hoping those that heard will think it's a stomach growl... hmm.

I'm sorry to hear that it's interfering with your social life. I have experienced the same issues in the past and then made the choice to change the food I eat to eliminate the noisy output. I found noise was caused by: SUGAR, carbonated drinks, air in the shakes and smoothies, beans and lentils, most cheese (not all cheese), milk that is not lactose-free, drinking from a straw, swallowing air when breathing through my mouth instead of breathing through my nose, and chewing gum. I only eat broccoli, cauliflower, onions with lots of olive oil (fat) on it, when I am staying home. Unsweetened plain yogurt reduces gas and odor. Hope this helps.

Well, I guess for me it was "suck it up, buttercup." There's nothing I can do to make it quieter, except if you want to carry a towel and hold it on your stoma to muffle the sounds, because you can't muffle it like your friends get to fart into the couch or cushions on a chair. It's great when there are young kids around because they can't help but laugh and giggle, and then you blame them. Good fart games.

Staying Hydrated with an Ostomy with LeeAnne Hayden | Hollister

You're supposed to help here.

But your new shirt was cute right?

You're going to do great going back to work, feel free to message me if you're having a rough day and need to vent. :)

Hi Amanda,

Oh, we understand, no problem there. Having a high output stoma definitely puts a crimp in your life, but at some point you're going to have to make a decision to either live with it and get on gettin' on, or let it ruin the rest of your life. Maybe it's a guy thing, but I really don't care if it makes noise while in public or does something stupid. I won't let it dictate how I live my life. I found that most of what was limiting me was all in my head. The things I thought people would notice and comment on never happened. I've been in dead quiet conference room when my ostomy started speaking.......and I just looked around and said.....man, I should have eaten something before I got here.......but was running late. After than no one even noticed. Worst case, just tell whoever is staring or whispering about you that you have an ostomy. They more than likely won't know what you're even talking about. Don't let others dictate your happiness. Cuz at the end of the day.......only you control that, not them.

;O)

Do you have problems with it now? If not, why would you when you're at work? One day at a time and a little more each day. You'll be back to your new normal in no time.

99 of these ostomy issues of not thinking you can do anything are in your head. Go have fun, hang out. If you fart really loud or have to go empty, just say you have an ostomy. If anyone says....huh?, explain it quick and move on.

I'm lucky I don't have the same problem as you. I do have anxiety, but not about my stoma and being with people I don't know well, and even long-time friends at times isn't easy. I can't hear well, so it makes it even worse with background noise.

Keep fighting those demons/thoughts in your head. When new friends ask you to go out, learn to say yes. I know it's not always as easy as that, and you will have good and bad days, even weeks, but you will gain more confidence over time.

I agree--you can't let your stoma dictate your life! You just keep on being you :) In the beginning, I felt like you did as well, but then I realized, hey, this little bag saved my life! You would actually be surprised how many people know someone with an ostomy--I know that I was. And for those who don't take the time, don't be embarrassed, and educate them! I've been in the position many times to which I have felt the opportunity to educate people on what an ostomy is and why I got it in the first place. Crohn's Disease is what I had, and you would be amazed how many people you bump into that probably know someone who has Crohn's! Keep your chin up and live for today and rejoice in the new lease on life that you've been given.

Did something change in the last few years to make your anxiety over it worse? Covid isolation? Is it just when with new friends? Humor helped me a lot. Mine was named Marilyn Monroe because my stoma was such a diva. I would totally blame Marilyn for everything. I was really open about mine—I know not everyone is—but I feel that helped too—not trying to hide something that was part of me and provided healing for my body. I have younger kids and even with their friends who were curious, we talked about it; I showed them the bag if they wanted to see it. I wanted to educate my kids and other kids about something so many people have but don't talk about and try to help remove some of the stigma. I've had supportive friends who were really curious. I have a cousin I hadn't seen in years thanks to Covid and then me getting really sick, and she was so curious about it, but I was wearing a one-piece romper that day so we just went into another room and I showed her. Super proud moment showing her a piece of my small intestine, aka Stoma, aka Marilyn. I think if you take control of the situation and determine what your approach will be beforehand, that will remove a lot of the anxiety. I've since had a reversal but sometimes my small intestine is still really noisy. It is today and I don't know why. Now I blame everything on not having a colon and we make jokes about how I can take almost anything and blame the missing colon. Depending on the person, if they're curious, I'll show the scar where my stoma was and say something like, "Can you believe my surgeon took my entire colon out through this opening?!" You set the tone; don't let what someone else may or may not think dictate your life... any facet of it. I'm proud of what my body has come through and I don't want to hide this part of my story. I've found sharing my story creates a safe atmosphere for others and I've had so many people want to talk about their struggles, most not the same health issues, but health issues nonetheless. There is a lot of commonality to be found among others with health issues past/present. Don't be afraid of hanging out with new people, wear clothes that you feel confident and comfortable in, and go into the situation anticipating a good time.

Jodie

Making noise is one thing that has never bothered me. I'm very comfortable telling people about "Stella." All my friends knew I was having a colostomy after suffering from severe IBS for six years. She's really not that noisy (don't pay attention to diet). And when she does speak out, I say excuse Stella. If I'm around strangers, I'll say the same thing and explain I have an ostomy. There's never been any embarrassment.
However, I'm a newbie (18 months) and do have anxiety regarding when Stella is active, which is normally after morning coffee. Because I have IBS, the time it takes to complete

emptying the bag can be as short as 30 minutes (rarely) or as long as 90 (usually). Because I'm OCD about keeping her as clean as possible, I rinse her with warm water. Sometimes I'll think she's done only to have her give me another go-round. Because she's like this, I let her dictate my morning and I miss out on some breakfast invitations or early excursions. I have to get over that. On a positive note, with rare exception, she's done until the next morning.
I taught high school for 30 years, getting up at 5:30 to start at 7. I don't know how I could have worked unless my principal allowed me a first-hour prep period.
I do empathize with your anxiety. Hopefully, your workplace will be a sympathetic one.

Only been an ostomate for 5 months, but like some of the previous statements, you can't let it control your life. To be honest, I don't even think about it when I'm outside, going to the Y to work out, or out in public just trying to lead a normal life. If my stoma, who I said I would never name but sometimes call "Sir Shit's a Lot," starts acting up, there's nothing I can do about it. But then again, I wear a t-shirt that says "No colon but still rolling" and have the same thing on the back of my car, trying to get people talking about getting a colonoscopy so they can grow old with their grandkids. It's who I am now.

Sorry w30bob; must've been you - not Bill.

Anyway, great comeback! Jb

Hello, I can relate. I find I'm isolating myself at times too, just because I have a bag. I don't have an answer or any advice I'm afraid, just know that you are not alone and that others feel the same way.

But I'm sure everyone is self-conscious about something, perceived and real.

Cheers, Ian.

Hi, I think we've all suffered with this at some stage. I have to wear a shield most of the day and it does keep the ileostomy quiet. It makes it a little more pronounced but it does help.

I had severe complications for about four years. I also had high output. The complications went away by themselves, and the high output also went away by changing my whole eating lifestyle, diet habits, and the rest.

I realized after this whole dilemma that I had wasted four years of my life feeling terrible about myself. I also worked the whole time, and that was also very difficult due to the side issues. I was so upset when I realized what a waste of time it had been. I decided that I would never let it happen again. I started to enjoy life again fully, and I never again cared or gave a damn what anyone thinks about this, even if I make sounds in public. I couldn't care less now.

I am pretty alpha, so I set my own rules, and I do not share this condition with anyone. I have zero issues dating or meeting people. If anything, I have to recuse myself from social activities now because I am working on a project.

Turns out it all had been in my head. I've dated a couple of times, once a very young lady, and they have not had any issues with this because I don't have any issues with it to begin with. I hardly change it because I changed my diet, and many other things I did so I could live with this without it bothering me at all. I am not even aware of it at all during the day, forget about it, but most of all, I couldn't care less about it and this condition. It does not define me at all; it is nothing. It all starts with us and in our minds. I took meditation and have done many other things to feel good and not care. Also, you need a good appliance. It's not just one thing you need to do but a series of things that will help you change, and therapy also helps.

It is easy to say that it just happens; it doesn't. It takes time; you get sick of suffering and feeling less than others. Misery tires you. Just take it a day at a time, but most importantly, develop attitudes and behaviors that will accentuate all the good and wonderful there is within you. You need to develop a strategy and attitude, and believe it; it takes time, slowly. It feels so good to not give a damn what others think, lol, it's empowering! I wish you the best and hope you can reach and live your fullest.

Put a sweater or light jacket casually over your lap or in front of you to quiet the noise. While standing, fold your hands low in front. I am a honker. My stoma can still be a little loud. I still work in very quiet offices!! Watch your diet too.

Everybody's different, and maybe I'm lucky that I work with just 15 colleagues in my company... but I like to forewarn people to save myself any embarrassment. "Hi, I'm Clair, just so that you know, I've got a stoma which is sometimes loud or stinky and I need to take long bathroom breaks often". People always appreciate the honesty, and usually can laugh with me when they hear me toot.

Hi Just,

Probably was Bill, as I don't think I've ever mentioned it before... but I think it would be a common sentiment among older ostomates!

;o)

Hello

I had an ileostomy for 17 years before I was able to find a doctor who didn't hesitate to help me get a colostomy. My ileostomy was from an injury I suffered from giving birth to my daughter. Like you, I was very reluctant to go anywhere do anything. I was always embarrassed because as time went on I also developed a hernia. My self-esteem also went downhill. I struggled going to work every day. I didn't want to even attend family gatherings. I would do these things just because I needed to. But I hated how I looked and felt.

Don't let your ileostomy take your life away. I had to convince myself of that even after getting the colostomy. And if your friends are awesome people they will not think twice of any noises coming from you. Keep your head up and take everything one day at a time. You're awesome just like you are!!

Hi Amanda,

Why don't you organize a night out with all your close friends and talk openly to them about your stoma and even show them? Once they all know, you can make fun of it when it makes a noise. If you lose a friend from it, then it was a friend you didn't need.

I use Devrom pills and they really help with cutting down on embarrassing noises and also with odor. They are a godsend. You can order on Amazon

I haven't been having any problems so far. 2nd day at work haha. I was having an issue with gas but that seems to have gone down. I'm trying not to stress too much. I took extra supplies for a just-in-case moment but I couldn't imagine trying to change it at work!

Sorry it took me so long to reply!

I have had mine for almost 50 years. There are times when I sometimes feel a little self-conscious when I am out and need to find a bathroom. But, I am just happy to be alive and have friends. If friends can't be understanding of my circumstance, they are not worthy of being my friend. If I hid from everything, I wouldn't have a life. I almost died from my illness before the pouch, so I am happy to be alive and being with friends and other people are part of a fulfilling life.

Just go out and have fun and enjoy yourself.

Yes, I have felt those emotions for many years. A friend will understand and support you.

Hi! I'm 53 years old and have an ileostomy since I was 11. When I was younger, I used to be really stressed about fart noises. Now, it happens rarely and if it does, I usually smile and say "Excuse my tummy." I've also become a lot more open about having an ostomy. It's been freeing and very positive.
I'm so grateful to live a full life with no UC symptoms or meds that I don't think about my ostomy much.

If your dentists are like ours in California, somewhere in the health questionnaire is a question about medications and prior operations. I have been seeing mine for over 30 years. He asked if I was still taking medications for my gut. I told him, "No, I'm cured." I then explained the surgery and how well I was doing. After that day, it never came up again. I just had an appointment with an oral surgeon. I answered the questions about surgery. It never came up. As I was laying back in the chair, my hands folded atop the bag. It works as a natural muffler. Gotta do something with those hands. Might as well rest them there.

Best of Health

SharkFan