Embarrassed About Bodily Functions, Need Advice

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dmanvman
Jun 20, 2013 2:37 am

This is my first blog. I signed up for this site a while ago but am getting too frustrated with the way life is going with this thing. And the sad part is I've had it my whole life and still can't get used to it.

IDK, just lately I have been more self-conscious of the noises that it makes sometimes, and I am trying to pinpoint the type of foods that I'm eating, but that's not working. And then on top of that, even more embarrassing is the smell that comes from it when I use the restroom. IDK what to do. At work, I get so embarrassed, and I just end up sitting uncomfortably, afraid to use the bathroom.

I think I just need advice, and I feel this is the only place to get it. I have not met anyone in person who I can really talk to about this and hope I can get some good advice or something on this site. Because it's so hard to act normal when physically, we are the opposite of normal. And I know it's bad; I look down on myself about this, but I guess I just have my back against the wall in options and don't know how to handle it and have no one to talk to about it.

And for a first blog, this is more of a cry for help, I'd say, but I'd appreciate some sort of advice or encouragement because, to the people I see every day, I put up this facade of being confident and cool, but if they knew who I really was and what I was really like physically, they wouldn't respect me or come to me for advice or even acknowledge me.

Again, this is a crazy first blog, and I'd really appreciate any feedback on this because it's comforting to know there are other people going through the same thing somewhere in this world; I just haven't met anyone in person.

But again, feedback would be great. Thank you, I'm sure there are a lot of great people on this site that I am excited to speak with.

smtalk8981
Jun 20, 2013 3:33 am

I know how it is about the smell! I spend a lot of time with family, and I hate using the bathroom. I'm financially strapped, so I don't always have the drops to put in my pouch. I would get the deodorizing drops if you can. They seem to work. About the noises, I don't have this problem too often, but if I were with you, I'd probably giggle. I tell family and friends that one thing I miss is farting. The noise from the stoma isn't the same. It seems for me that if I don't eat for a long time and then eat, gas escapes (I hope that makes sense)! Also, mornings are sometimes worse, hence the fact I haven't eaten in a while. Another thing I hate is when I'm in a public restroom and I have to empty, and there are other women. I'm always afraid someone will look under the stall or see through the crack and see me facing the toilet! Anyway, you may not believe it, but there are plenty of us out there with the same frustrations. Good luck to you, and I hope you find some solutions to your problems.

Posted by: GoinWithTheFlow

Hubz had a regular checkup with the oncologist on Friday (his numbers are improving), and as they were asking how he's feeling since surgery, they became curious about how he's doing so well with his ostomy, both physically and mentally. He credited doing research online, trying different things, and especially the support from this group. They were asking because they see so many patients struggling to adjust.

We described this group as folks with every kind of ostomy, some for days while others for decades, but all willing to share what's worked for them with the caveat that every individual is different.

We described the most valuable element as feeling like you're not alone in this. That really piqued their interest, and they wrote down the link. It seems they had a few people in mind that might benefit from the community and thanked us for telling them about it.

You know, we can't remember exactly who we learned about this group from, but we're grateful for it every day! Thank you all! 🌻

Past Member
Jun 20, 2013 3:12 pm

The deodorant drops into the pouch really work, so if you can get that, it eliminates that issue. And as mentioned by smtalk8981, eating regular meals prevents gas buildup.

lulu1313
Jun 20, 2013 6:48 pm

If you have difficulty affording drops, try baking soda and cloves. Mix soda with a couple of teaspoons of cloves and add a spoonful to bags. It is good for odor and cheap.

arlene
Jun 20, 2013 7:17 pm

Try mouthwash; it works for me! So far, so good. I've had an ileostomy for 2 years now. I started out with leaks for a couple of months, but things have settled down, and I'm doing well.

 

Living with Your Ostomy | Hollister

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johnnyB
Jun 20, 2013 11:58 pm

Hi, I was the same way. If you can get M 9 in liquid form at the place where you get your supplies, it works well, and don't feel bad about yourself; it happens to all. Just smile, that's what I do.

merner
Jun 21, 2013 12:08 am

I use Na'Scent for the odor, and it is fabulous! My husband has a very weak stomach, and he cannot smell anything when I empty my pouch. Medicare will pay for two bottles a month. I have to use a little more than they say on the bottle, but it is worth it to me and my hubby. If you try it, I hope it works as well for you.

Bill
Jun 21, 2013 5:35 am
Hello dmanvman, Thank you for blogging your thoughts and feelings in this way. We 'all' feel embarrassed to some degree when we think that our own 'inconveniences' impinge adversely on others, hence the use of deoderants etc. This ability to be empathetic and considerate towards others can (if taken too far) lead to feelings of frustration, 'guilt', anxiety, fear and other related emotions. It is a very positive and admirable trait to try to eliminate or mask the embarrassing bits in life, especially if they are embarrassing to other people. Because embarrassment is a 'normal' response, this surely makes us 'normal' for the condition we have. I find that the underlying thing is not about the physically embarrassing things we have to put up with but more about how we deal with these things psychologically. Most people do not disrespect others for the physical ailments they have but they make judgements about how these things are being handled psychologically. Logically,there is not much more we can do about our physical condition.It is a part of our lives whether we like it or not and if we learn to live with it and gfet on with the rest of our lives others will have little choice other than to accept us for the people we are (or at least present ourselves as being) There is plenty that can be done to eliminate or mask the physical but there is much more that wwe can do to raise our confidence, self-esteem and the positive presentation of ourselves to ourselves and others. I do not wish to diminish the impact that embarrassing incidents have on those that are diectly and personally involved. However, personally, I quite enjoy the embarrassing moments because I am acutely aware that I will keep them as a store of 'interesting' stories to share with others, as and when the opportunities arise. I have found that once the actual incidents have passed and I have 'lived to tell the tale' - the incidents somehow become amusing both to myself and to others. As most comedians will tell you - it's all in the way you tell them. Best wishesBill
luie1234
Jun 22, 2013 9:44 am

, I know how you feel when it comes to the smell. When I first got mine, I didn't know about the smell until I used the bathroom at a friend's house. When I came out of the bathroom, their teenage daughter smelled it down the hall and made a big deal out of it in front of her friends in a joking way. She had no idea I had just got the bag; she simply thought it was something I ate and was giving me a hard time about it. I swear I wanted to die or crawl under a rock and hide forever. Since then, I've tried all sorts of stuff to stop the smell. What I found that works for me is mouthwash and/or watered-down bleach. Yes, I said bleach. I know, right! It sounds a bit extreme, but heck, I was determined to never be embarrassed like that again. I had to dilute the bleach with water, and even then, it sometimes burns when against the skin. I carry a small bottle of bleach in my pocket. I use those small hand cleaner travel bottles filled with diluted bleach. That way, if someone sees the bottle, they think it's just hand cleaner, but I try not to let people see the bottle because I've had people ask if they can use some hand cleaner. LOL. I then have to either explain or tell a little white lie.

weewee
Jun 23, 2013 7:34 am

Go to your local janitorial supply store, and they have a good air spray that eliminates the odors just fine. If you are that worried, tell the boss to get it for you. I have had it for days; I know I am eating things that will make the smell stronger. It costs about 8 bucks for a big can that lasts about a month if you don't overspray it.

merner
Jun 23, 2013 10:54 pm

My sister told me that poo is poo no matter what hole it comes from! How true she is - if it comes from the normal way, we would not be so worried about the odor or looking for anything besides room deodorizer.

britathrt60
Jun 24, 2013 5:10 am

I have an ileostomy, and yeah, when you empty it, it reeks because it's really just like raw sewage. I was in a public washroom after emptying, washing my hands, when a lady I didn't know came in and said, "Phewwwww," to which I replied, "Yes, what an awful smell." She didn't know it was me who did it... and guess what... who cares.

britathrt60
Jun 24, 2013 5:10 am

Don't stress about it too much, dmanvman. At least we don't plug up the toilet with ours. Lol, and sometimes those big poos that people with all their plumbing do stink to high heaven. Just sayin.

moonshine
Jun 25, 2013 5:59 am

I empty my ileostomy bag at least once an hour and flush about 3-4 times. The first time is when the contents hit the water. I have found that the more water I drink, the less odor there is. Also, for some reason, citrus helps. I drink a peach-flavored water....

boatlady
Jun 26, 2013 7:12 am

I have had my ostomy since February 1986. I have not allowed it to rule my life. I lived on a canal boat for 16 years. I bought it as a project, did plumbing, carpentry, lots of painting, tiling, and so much more. I also went on my first flight all the way to Australia to see my sister. As for the smell, I use a spray that you can get from Clinimed. They offer a variety of different scents. I sometimes use pellets in my bag that I get from B Braun. I don't know many people who don't leave a smell when they go to the toilet, so don't worry about it. Live your life to the fullest. I go swimming in my local pool most days and use the disabled room to get dressed, sometimes changing my appliance. So, enjoy the fact that you no longer have the awful time you had before the operation.

Past Member
Jun 26, 2013 8:35 am

Hi dmanvman! Every time I read the comments here, I learn new ideas that I always try out myself. What works for me is taking a large empty water bottle (just any plastic one like joggers carry) into the bathroom with me. When I was working, I always had to pass by the security desk on the way to the quietest bathroom on the first floor. The staff there thought I was going to refill my bottle at the drinking fountain, but I filled it with warm tap water once I got in the bathroom. I always used the handicapped stall as there is more room to maneuver. I'd rinse, flush, rinse, flush, until all was clean. Flushing several times may be kind of embarrassing as others in the bathroom will know you are pooping when you do this, but it is better than having the odor drift up. Afterward, I sprinkle a few drops of Odors Away on the back of the commode. This stuff is fantastic! Two drops and any bad odor disappears. The bottle is tiny and lasts forever. I don't use deodorant in the bag as it gives me a rash. I am going to try some of the natural suggestions above. Here is a link to Odors Away as I don't know where you live and you may need to order it. http://www.hardwareworld.com/Odors-Away12-ounce-pTVE1M7.aspx?gclid=CLfHwcKqgbgCFVQV7AodsCYAJw I agree 100% with what Bill said. Others can laugh with us as long as we react with humor about things like farting in public. But if we act embarrassed and uncomfortable, it makes others feel the same. My worst nightmare was board meetings and the bag going off until it happened. I just looked at the guy next to me like, eewww. No one really can pinpoint the sound unless there are just two people in the room. If there are a lot of people in a room, everyone just shuffles and giggles. If there are just two, say excuse me and move on. But if you wear the expression of a culprit, everyone will know it is you. Best to you and kudos for having the courage to blog. Take the comments here to heart, try out the suggestions, and find what works for you. The one thing that works for all of us is humor, the ability to laugh at ourselves, and the confidence to continue on with grace and dignity. I remember when I first got my ostomy, I was using a giant syringe to squirt water into the bag. It took me forever, but that is what they sent me home with from the hospital. I would cry at the mess and how long it took. Then, I put my thinking cap on and realized that most people nowadays walk around with plastic water bottles all day long anyway. I realized how quickly you can fill and drain a bag with one of these. At home, I use a dainty plastic watering can with a long curved spout. It sits beside the commode and blends in perfectly with the plants and bathroom cleaning supplies. I always give the commode a couple of sprays of Clorox bathroom cleaner after each rinse. That kills any germs and makes the bathroom smell great, too. It's just a matter of finding what implements blend in best with each situation. In public... a plastic water bottle. At home... whatever is handy for you personally. Good luck and God bless. You will be fine. Reaching out is the first, best step to any problem. There is a wealth of information on this site. It saved my life. I love the kind, caring folks here. Loretta

Past Member
Jun 26, 2013 11:36 am

Everyone has given you great advice about odors, and I have used Stop and M9 previously, and it works well. Everyone, with or without a bag, has an odor after a bowel movement, so just keep it in perspective. I think I would make sure that you always have a light breakfast with protein (maybe an egg and toast or cheese toast) with a beverage, and try to eat anywhere from every 2 hours (SMALL MEALS!!) and no longer than 4 hours between breakfast and lunch. I think this eliminates the sounds that may escape as our stomas need nourishment, and I think the buildup of gas or air is the result of not eating for extended periods of time.

When you go to the bathroom, try to hold the bag in such a way that it just doesn't empty all at once (flush if you want before releasing the poop), and I sort of let the air out first (the bag gets very puffy), and then I dump SLOWLY so it is not that splash. Also, get a plastic or little cup you can carry into the restroom before you go into the stall and fill it with water. This will help to clean the bag after eliminating the poop. I also sometimes fold my bag in half and sort of milk it before rinsing, and it helps to clean the bag easier.

I don't recall how long it has been since your surgery, but CALL THE LOCAL HOSPITAL AND ASK FOR AN APPOINTMENT WITH AN OSTOMY NURSE and spend time with this person to help you adjust even better. There are also sites on the computer, I believe, you can find on Google that will get you in touch with OSTOMY NURSES that deal with these issues on a daily basis.

If others in the stalls hear you empty, just put it out of your mind, and after a while, you won't be as self-conscious as you are now. We all have to eliminate, and some have different ways of doing this, and it is what it is. Just know that it probably bothers NO ONE BUT YOU, and I mean that in the kindest way.

The fact that you are here and alive and feel good after surgery is the best way to cope with this surgery. I had 3 surgeries and nearly died and lost 30 pounds with Crohn's/Colitis, etc., and was in and out of hospitals and a rehab center. Trust me, in Rehab, I SAW A LOT WORSE THAN WHAT I WAS DEALING WITH. If you want to visit a rehab, do so, as it will really make you grateful for what YOU HAVE, as there are many who would change places with us in a heartbeat, as I witnessed at the rehab center.

So good luck and feel free to ask anyone here how best to cope. The main thing is to be GRATEFUL FOR EACH DAY OF LIFE YOU HAVE and not dwell on things we all on this board accept and adjust to...some more easily than others, but we make it. Hugs to you!

Past Member
Jun 26, 2013 2:05 pm

Hello. I am so glad to see you reaching out. I do not have an ostomy, but I work with ostomy patients on a regular basis. Something that I see all too often is ostomates sitting at home suffering because they do not know how to get help. Most insurances will pay for visits with ostomy nurses, but sometimes it is hard to find one. If you need an ostomy nurse, calling the local hospital might not work. You can go to The Wound, Ostomy and Continence Nurses Society website at www.wocn.org to look for ostomy nurses near your area. You can also request free samples like drops, pouches, and other accessories from the manufacturers (I can't recommend specific companies, but there are many, and they all have great products!). Good luck to you. Please continue to reach out. There are many ostomates that I see who live full lives.

Bikergirl
Jun 26, 2013 3:39 pm

I have heard good results from using a Tic Tac in your pouch. Fairly inexpensive and might help with the smell! As everyone has already stated, all poo smells, and nearly all people will react to a smelly bathroom! LOL. Hope some of the great comments to your post will help ease your concerns. You are never alone.

The Wulfrunian
Jun 26, 2013 5:51 pm

Hi, I'm not sure which country you live in, but here in the UK, all prescriptions are free because of the ileostomy. The best thing that I have found to reduce the odors is the little concentrated deodorizers like 'Limone Ostomy Deodorant Spray.' Contact them here; they will even send you free samples http://www.clinimed.co.uk/Stoma-Care/Products/Stoma-Skin-Care-and-Accessories/Limone.aspx. The can is no bigger than 4 and fits quite well in your pocket, so you can carry it and give a few short sprays before you empty your pouch, and you will be fine. PS: don't eat eggs unless you want that eggy smell to continue. Some foods smell the same on the way out as they did on the way in, and eggs are one of the main ones. For the embarrassing noises, you will be surprised at the number of things a crisp sheet of A4 white paper can hide. If you're in a meeting or anything like that, then just hold a piece of paper on your lap with a notebook or anything that does not look out of place. Then, when you feel the ostomy is about to produce a noise, just rustle the paper away until it has passed. It works wonders! Good luck.

simcha
Jun 26, 2013 8:34 pm

Oh, I know exactly how you feel! The feeling of having no control over the sounds and smells is really, really frustrating! If you can get some M9, give it a good squirt into the bag, not just the measly drops they recommend on the bottle. There is also a product called Nullo that you take internally. I think it is some kind of chlorophyll compound, and it will turn your output green, but it really does work on the odor. If I'm going to be out for a long day and know I am going to have to empty in a public restroom, I will swallow a pill every 3 hours or so. As far as the noise goes, I tell people it's my new cell phone ring!

NVIOstomy
Jun 26, 2013 11:37 pm

I have had an ileostomy since March 2009, and I had a colostomy for five years before that. I never got used to the colostomy and don't really feel that I will totally accept the ileostomy. Neither is what I wanted or expected. I realize that the surgeries were done to increase my standard of living and help me deal with the complications that I had suffered from Crohn's Disease. I found that once I told my supervisors about the problems I was and would suffer from, they had no problem allowing me to go home if the pouch leaked, if I wasn't feeling well, or being considerate of my condition without making me feel inferior. My insecurities were something different, and I have to say a large reason why I did not return to work after the ileostomy and why I spend most of my time by myself. The smell with the colostomy was ten times worse than I have experienced with the ileostomy. I don't have a solution for that, as most of the suggestions that others have given caused my stoma to bleed. Now I am home most days and empty the pouch about ten times a day. I've lost my ability to be embarrassed; I need to empty when I must, and who cares what anyone else thinks when I am away from home.

In dealing with acceptance of the changes in my life, I saw two ladies who had lost limbs and found that I was able to alter my thinking. One was after the tornado in Joplin, Missouri, and the other was after the Boston Marathon bombing. I realized, hey, they are moving on and accepting their lives with more visible losses, so why not me too! That was a turning point for me to start accepting and begin healing the hurts that I inflicted on myself. If others cannot accept me because of Charlie (that's what I call the pouch), that's their problem. I can't change it, and if I did, I would be trying too hard to make someone accept me. People should be able to accept others for themselves, not some preconceived idea of how someone should or should not be. My husband left me because I was sick, and the doctor could not guarantee that my condition would not worsen. I have been interested in guys who have run because they either don't understand or are not willing to understand or accept me as a person who lives with Charlie. That's okay; I don't need them. I have put my faith in God and believe that if there is someone who can accept me for me, God will guide them to me. I'm no longer living my life in shame that I created for myself, but I am also not trying to convince someone that I am a good person who has to live with Charlie. I know I am a good person, and so are you. I hope my thoughts help a little bit. :-)

latina63
Jun 27, 2013 5:42 am

Well, I must have been lucky because my ileostomy did not smell bad. That's what I liked about it - I could go and have a good BM, and no one smelled it! It only smelled rank in the mornings. I have had my reversal now for about 8 months. Good luck; it will get better.

britathrt60
Jun 29, 2013 12:46 pm

Congrats on your reversal, Latina. Hope all keeps going well for you in the future.