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Is the smell real or is it me?

Posted by Tbrown3404, on Sat Jul 08, 2017 8:18 pm

I am nearly 90 days into having this colostomy. I have an ostomy nurse who is fantastic. My husband and I have the care and maintenance down pretty well, I think. I'm currently using the Hollister 2-pc with filter. A lot of times I will be completely clean and I think I'm smelling the ostomy. When I ask my hubby, he says he doesn't smell anything. In your experience(s), are the smells really there or is it in my head? Sometimes I think I'm going nuts with this, but no one can answer unless they've been there. Any comments/suggestions are most welcome.

Have a good day.

Reply by Bill, on Sun Jul 09, 2017 4:31 am

Hello Tbrown.

Welcome to the MAO site and thank you for asking such an intersting question. 

As with so many other questions raised regarding stomas, there is no strightforward answer to this one. However, I will try to comment constructively so that you (hopefully) are not left with the feeling that you're going nuts!

Firstly, there will be some smells that are potent enough for everybody to get a whiff of and these need to be managed, either by the many methods of pot pourri potions and lotions available, or by being confident enough to admit the problem or walk away leaving the smells behind. I feel sure that your husband would be honest enough to tell you when he detects smells at this level so I will move on to those smells that only you/we appear to notice.

These come in a whole variety of different fragrances, from that generated from the output, which is usually unmistakable, to smells coming from things like  mucus and body odours- down there! Sometimes these are from the stoma, other times they're from the anus and yet more times they seem to just seep from unidentifyiable parts of the body where they did not come from before.

If your husband genuinely cannot smell them, then they may be clinging to your own body and making their way to your nose without involving other people's olfactory senses. This can be disconcerting because we are conditioned to believe that everything we smell, everyone around us also gets a bit but this is not always the case.

Some people deal with this phenomenon by wearing perfume(usually expensive) all the time. Personally I hate most of it as it smells worse than whatever it is the person is trying to cover up and it always strikes me as yet another way of polluting the atmostphere but in this case it is done deliberately.

Now we come to the vexing subject of smells that may or may not be 'real'.   Some people are very sensitive to what they deem as 'smell' because the sensation is experienced in the same way as smell from external sources. I don't know how many people realise that smell and taste are much the same thing in terms of the mind's perception of the experience so what may seem like smell, might be something that the person is tasting. This can be witnessed when we have eaten things and appear to smell them long after they have been digested. (of course they may still be apparent as a smell on the breath but sometimes they are tasted from within rather than externally).

From my own experience, the problem lies in the phenomenon of whether we 'worry' about these sorts things, or whether we have developed ways of accepting them for what they are and move on to be distracted by more interesting and enjoyable things in life.

'Worry' is a derivative milder form of 'fear', which is one of many emotions that would be better kept under control, rather than allowed to run riot on their own. Unfortunately,  most people have grown up in a world where there are vested interests in making sure that the majority of humans do not having control of their own emotions. This allows them to be easily exploited by politicians, salespeople and those who want to dominate others. Thus, the methods and techniques  of emotional control are rarely taught to our children or to adults because there is little to be gained by those 'in charge'.

When fear, anxiety, worry, etc becomes a problem, it is often portrayed as an affliction or fault in the individual sufferer, rather than a reflection of aspects of the society in which we live. As long as this perception can be sustained, then the sufferer can be both blamed and 'treated', without needing to draw attention to the underlying causes. The status quo is maintained and the money makers gain at every stage of the process.

That's my little soap-box stand but there are those who have developed alternative attitudes such as "S-it - happens! -get over it!" or "This is not my problem!" or "Don't worry -- be happy!" etc.  Indicating that getting embroiled and 'stuck' in unproductive emotional responses is counter to living a carefree life.

I realise that this response may not be what you expected but I hope that you find some of it helpful

 best wishes

Bill 

       

Reply by drfields24 , on Sun Jul 09, 2017 3:02 pm

Hello I had my colostomy since Dec 2016 and yes the smell is very real but I find the older the bag is Day by day it becomes more potent. A fresh bag no but the more stool gets in the bag and emptied slowly become more evident. I'm told ileos are not as pungent and is more liquified. I also think because stool is no longer coming out through the rectum our brain immediately makes us think that we smell. Now everyone uses different things to control the smell. I really like bravo by Coloplast. I'm sure others will share what they use. Hopes this helps. 

Reply by Tbrown3404, on Sun Jul 09, 2017 8:14 pm

Thank you DrFields24, some good information to know. Will be talking with my Hollister rep tomorrow and see if they can send some Bravo so I can try this out. 

Best wishes and have a great evening!

Tbrown3404 

Reply by Xerxes, on Mon Jul 10, 2017 6:45 am

Thrown3404,

This is what I have found to be the case after 48 years with an ileostomy. If you smell fecal odor it is REAL. Everything might look normal regarding the appliance and wafer (two piece system), but it is not. Most often in the absence of physical evidence, i.e., fecal material under the appliance or wafer the smell is due to small, what I call micro perforations that form when the wafer is not tightly bound to the skin and as a result, gas leaks out.  Everything apppears normal, but it's not. This is usually followed shortly thereafter by fecal discharge. However, I have also found that occasionally I can detect another distinctive rather persistent odor that can develop that is nothing like fecal in nature. It appears to be associated with the appliance and specifically the sheathing (that covers the appliance and reduces sweating in contact with the skin). I believe that body heat has something to do with it. As the pouch warms up over time in contact with the body, the odor appears. This rarely happens, however. I have called the company (Convatec) and they told me that others have also complained about this problem. They do not know why this occurs, but they assured me that it has their attention. (Not sure what that means). Anyway, this what my experience with odors has been over the years. 

 

X_

Reply by NJ Bain, on Mon Jul 10, 2017 10:18 am

Tbrown,

  It may also be the filter.  They can become saturated over time and not work properly.  I myself prefer a 1 piece drainable pouch and I burp the gas occassionally.

  There are several old posts in the forums on this matter.  Below is one of them.

 

https://www.meetanostomate.org/phpBB2/viewtopic.php?t=5621

 

  There are several others.  Just to a google search at the top of the page for ostomy and smell and you'll see what I'm talking about.  Hope this helps.

 

Bain

Reply by Tbrown3404, on Mon Jul 10, 2017 1:05 pm

Xerxes, thank you for your information. Every bit helps!

Have a great day!

Reply by Tbrown3404, on Mon Jul 10, 2017 1:07 pm

Hi NJ Bain, thanks for the info and link. Will go back to some of the older posts and see what's there. Really appreciate it.

Have a great day!

Reply by mdq58, on Mon Jul 10, 2017 3:16 pm

I've had an ileostomy since 1976.   Getting down to brass tacks ostomy output smells can be quite potent.  If you think it smells that's all that matters.  I have found the product M9 to be easy to use and effective.  If used regularly it's especially effective.  I tried bismuth subgallate, but who wants to carry a bottle of pills around you have to take every time you eat something and I didn't find the 100% effective.

 

Hope this is helpful

 

Mike Q

Send me a note if you have any more questions.

Reply by Tbrown3404, on Mon Jul 10, 2017 7:30 pm

Thanks Mike, appreciate your comments. Guess this is one of those things you gotta shop around to see whats right.

Best wishes,

Tbrown3404 

Reply by Newbie Dana, on Mon Jul 10, 2017 10:36 pm

I also use the Hollister 2-peice and disposable pouches with a filter. I have noticed some faint smells which seem to develop from the appliance portion toward the end of its life (5-7 days), and I will generally change the appliance when these smells seem to be persistent, even if nobody else smells anything, and even if the appliance seems in good shape otherwise. It is usually an indication the appliance will have a catastrophic failure within the next couple of days, and I don't want to push it.

The filters are good, but not perfect, and some faint smell may escape through the filter as the carbon in the filter gets used up. At least with the disposable pouch with filters, that's an easy fix - change the pouch!

Lastly, I have taken to using the Aqua Seal from Costa Medical over the appliance every time I change the appliance. Not only does it ensure that the appliance stays waterproof and tighly sealed to the skin for 5-7 days, but serves as an emergency sealer incase of unforseen breakthroughs of waste from under the appliance. It may be my imagination, but I believe it also has cut down on escaping odors from beneath the appliance. Hard to tell - my husband claims the odors are all in my head to start with, so how can I tell they're lessened? In my opinion, however, they are there, just too faint for him to notice. And it has such a positive effect on my self-confidence, knowing I am taking definite steps to prevent any odors.

I wish you good luck, and a hope for a clean and odor-free existence for the future!

Reply by Immarsh, on Tue Jul 11, 2017 2:50 am

Hi,   I'm Marsha, and I've had my ileostomy for more than 50 YEARS,,,,, since I was a kid of 15.   Back in the "olden days" pouches were made of rubber, and were reusable, and they did give off an odor.   I use to rince out regularly.   But since I started using disposable supplies ( convated 2 piece)   I've  haven't had real probems with odors....that others can detect.   But for some reason, I can smell it on myself.  It's really very odd, because I have relatives and close friends who would tell me if they noticed anything.   I've used some of the newer convatec products,   moldable wafers / Eakin seals, and I don't like the mesh that covers the both sided of the pouch.  I think they hold water, irritate my skin, and hold odor.   So I use baby powder, between my pouch and skin, and I always check for leakage.   The new filtered pouches are also making me neurotic.....thinking that I'm getting the scent through there.  After 50+ years, I think I should be less anxious.   But I think it's like bad breath, or underarm odor......we just want to make sure no one else can detect an odor.   Best of luck to you.   Marsha,

Reply by LadyHope, on Tue Jul 11, 2017 8:20 am

This is a good post and one that I can relate.  One of my ongoing fears having an ileostomy is odor.  I often ask my husband, does Stanley (my stoma) smell. Do I smell like poop or gas?  This is what I found with the smell, no smell concern.  A fresh bag does not hold odors when first utilized and emptied.  As the day progresses and the bag is emptied more often, warm weather or body temps grow the bacteria in the pouch which causes the odor.  To lessen my concern, I use an ostomy deodorant.  I have tried many different types, but the three I like the most is Na'Scent, M9 and Safe and Simple. All have their pros and cons but these products help ease my mind and the anxiety of walking around smelling.  I also use a pouch with a filter to lessen ballooning when I produce gas.  I found that the filter will absorb the effluent in the pouch like a sponge and eventually smell.  To remedy this challenge, I change my pouch every day or every other depending upon how the filter looks. Hope this helps.  Take care.  Have a nice day.  Sincerely,  LH

Reply by adamnyankee, on Tue Jul 11, 2017 11:42 am

I use a one piece sen sura mio, and I shower naked daily and change my appliance daily.  When I tried to change less frequently I also noticed odors, even with deoderants and essential oils.  The bags hold the bacteria and this just smells. Due to execessive output, I cannot use a bag for more than 24 hours w/o noticing a distinct odor.  Most folks do not/cannot change daily for various reasons such as financial, as most insurance only covers 20 bags a month for a one piece set up and the other 10 bags can cost upwards of $148. along with the other necessary supplies to make a change.  This can get costlyl.  Also, some folks cannot handle the adhesive from the bag being "torn" from the skin so often and suffer skin irritation.  I have found that when I change daily after showering, I feel cleaner, and I believe I smell better.  Psychological or not, for me it is a necessity.  I also don't appreciate insurance companies or the government telling me how often I can change my dirty underware !!!

Reply by LadyHope, on Wed Jul 12, 2017 9:05 am

Yes, insurance companies are very difficult.  I do not understand how they are permitted to assign the number of medical products a person needs each month to live comfortably without speaking with the customer and learning about their individual situation. We are their customers but it is a different sell.  We can't walk away and stop using a product....  And each person is different.  What I need, may not be what you need each month.  I find some months, my wafer erodes less quickly, other months it breaks down more rapidly.  Having an ostomy has been an education experience on many different levels.  What really scares me is that some insurances do not cover ostomy supplies.  How is that possible?  It is a medical necessity. Speaking of pouches and medical supplies, I called around price shopping to see how much a monthly supply of product would cost me out of pocket just in case......I almost passed out.  The monthly cost was in the area of $900... a mortgage payment. Unbelievable.  Thank you for your post.  Sincerely, LH

Reply by mdq58, on Thu Jul 13, 2017 8:34 am

Hey,

Like a gotta things you gotta find what works for you.  I like convatec products because the built in paper tape provide a good water proof seal which allow me to swim and just makes bathing easier in terms of longevity of my appliance.  I change mine every 4-5 days.  My skin did have a reaction to iconoclast products.  This is just my experience.  My stomach sits right at my waistband.  Hope I'm not repeating myself and this is useful

Mike

Reply by NJ Bain, on Thu Jul 13, 2017 8:59 am

Another thing you might consider is certain foods you eat or if you take Omega-3 or fish oil pills.  I was taking them for a while and noticed that a metallic fishy smell was permeating the pouch.  I've since changed to gummy type Omega-3 pills.  Just something to consider.

 

Bain

Reply by Angelicamarie, on Sat Jul 15, 2017 6:47 am

Hi , I'm Angelicamarie it's not in your head I have the same problem. I seem to detect a smell, but my husband don't, I will use M-9'from time to time , about 6 drops when I do. But I smell that when I empty, which my mom says she smell nothing, but my husband does, only when I empty. I too was told by my Doc and he responded it's in your head, also because it's so close to your nose that could be it too. But your not by yourself, just check,yourself and push on!!!Good luck!

angelicamarie

 

Reply by Newbie Dana, on Sun Jul 16, 2017 4:49 pm

Hi! As far as the insurance company limiting how many you can order, it's actually that the supplier (like Edgepark) requires a prescription be written for the supplies. As it turns out, there are "standard amounts" (mainly based on what Medicare will cover) which doctors who don't know any better will write into the prescription! My insurance company will cover ALL that I need, but getting it past Edgepark is impossible! The difficult part is finding out WHICH doctor is writing the prescription so it can be changed with Edgepark - I am still trying to wind through THAT red tape!

So, to get extra supplies - do NOT try through one of the regular suppliers who accept insurance. Their prices are jacked up 3-4 times, so they can come down to a reasonable amount when dealing with the insurance companies. It is much better to find one who doesn't accept insurance - their prices are more reasonable in the first place, and often you can get at least a per centage of the cost covered by your insurance after the fact. Also, don't leave ebay out of the loop - I have often found supplies there even cheaper than through suppliers who don't take insurance. And again, I can get 70% of the cost that I paid up-front recovered through my insurance company.

Reply by Cuppatears, on Mon Jul 17, 2017 2:15 am

When I first had surgery, Aug 2014, I could smell the whole getup ALL THE TIME. (Except once when my best friend told me she thought I should go to the restroom, I hadn't smelled or felt anything, and I was in the middle of a bad bad blowout!)

Anyway, I changed products from Hollister to Coloplast and have not had that issue since. However when emptying the pouch, watch out! I will try some of the products mentioned here.

By the way, when my train passes thru a particularly noxious (swamp) area of NJ, I instinctively touch my pouch to check if I'm the culprit!

Reply by Scott407, on Thu Sep 12, 2019 2:32 am

I just want to say that I’m javing the same issue with the pouch heating up from contact with the body and putting off a terrible smell. It’s frustrating. The pouches were donated to me and I think they may be old. I’m ordering some new pouches and hope they do t do the same thing.

And to Bill who replied to this post basically dismissing the notion that the smell is real, you’re an idiot. How insulting. The smell is real. It’s not in  his head. I’ve seen others reply with similar insulting gresponses 

Reply by Bill, on Thu Sep 12, 2019 6:02 am

Hello Scott407.
Thank you for giving me a special mention in your reply to TBrown’s post, although I feel that you have perhaps misread and misrepresented my own reply to this post.
Firstly, I would point out that TBrown wrote--- “When I ask my hubby, he says he doesn't smell anything. In your experience(s), are the smells really there or is it in my head? Sometimes I think I'm going nuts with this, but no one can answer unless they've been there. Any comments/suggestions are most welcome.”
It is clear that TBrown was welcoming ‘any’ suggestions and was also questioning whether the feelings were real or imaginary.
I felt that my own reply tried to address both scenarios separately;
The first paragraphs dealt with the probability that these smells were ‘real’ and that the husband could not smell them but she could. I quote:
“Welcome to the MAO site and thank you for asking such an interesting question.
As with so many other questions raised regarding stomas, there is no straightforward answer to this one. However, I will try to comment constructively so that you (hopefully) are not left with the feeling that you're going nuts!
Firstly, there will be some smells that are potent enough for everybody to get a whiff of and these need to be managed, either by the many methods of pot pourri potions and lotions available, or by being confident enough to admit the problem or walk away leaving the smells behind. I feel sure that your husband would be honest enough to tell you when he detects smells at this level so I will move on to those smells that only you/we appear to notice.
These come in a whole variety of different fragrances, from that generated from the output, which is usually unmistakable, to smells coming from things like mucus and body odours- down there! Sometimes these are from the stoma, other times they're from the anus and yet more times they seem to just seep from unidentifiable parts of the body where they did not come from before.
If your husband genuinely cannot smell them, then they may be clinging to your own body and making their way to your nose without involving other people's olfactory senses. This can be disconcerting because we are conditioned to believe that everything we smell, everyone around us also gets a bit but this is not always the case.
Some people deal with this phenomenon by wearing perfume (usually expensive) all the time. Personally, I hate most of it as it smells worse than whatever it is the person is trying to cover up and it always strikes me as yet another way of polluting the atmosphere but in this case it is done deliberately.”
The second part of my response dealt with the possibility that the ‘smells’ were imaginary
Quote:
“Now we come to the vexing subject of smells that may or may not be 'real'. Some people are very sensitive to what they deem as 'smell' because the sensation is experienced in the same way as smell from external sources. I don't know how many people realise that smell and taste are much the same thing in terms of the mind's perception of the experience so what may seem like smell, might be something that the person is tasting. This can be witnessed when we have eaten things and appear to smell them long after they have been digested. (of course, they may still be apparent as a smell on the breath but sometimes they are tasted from within rather than externally).
From my own experience, the problem lies in the phenomenon of whether we 'worry' about these sorts things, or whether we have developed ways of accepting them for what they are and move on to be distracted by more interesting and enjoyable things in life.
'Worry' is a derivative milder form of 'fear', which is one of many emotions that would be better kept under control, rather than allowed to run riot on their own. Unfortunately, most people have grown up in a world where there are vested interests in making sure that the majority of humans do not having control of their own emotions. This allows them to be easily exploited by politicians, salespeople and those who want to dominate others. Thus, the methods and techniques of emotional control are rarely taught to our children or to adults because there is little to be gained by those 'in charge'.
When fear, anxiety, worry, etc becomes a problem, it is often portrayed as an affliction or fault in the individual sufferer, rather than a reflection of aspects of the society in which we live. As long as this perception can be sustained, then the sufferer can be both blamed and 'treated', without needing to draw attention to the underlying causes. The status quo is maintained, and the money makers gain at every stage of the process.
That's my little soap-box stand but there are those who have developed alternative attitudes such as "S-it - happens! -get over it!" or "This is not my problem!" or "Don't worry -- be happy!" etc. Indicating that getting embroiled and 'stuck' in unproductive emotional responses is counter to living a carefree life.
I realise that this response may not be what you expected but I hope that you find some of it helpful
best wishes
Bill”
Scott---
Coming back to your own reference to my post in which you say:
“And to Bill who replied to this post basically dismissing the notion that the smell is real, you’re an idiot. How insulting. The smell is real. It’s not in his head. I’ve seen others reply with similar insulting gresponses”
If I really thought that I had dismissed the notion that the smell was real, then I would have omitted the whole of the first section of my reply and you r comments might have some validity. However, if I had dismissed the notion that the smells might be imaginary, I would have been dismissing what TBrown was saying in the original post.
To call me an idiot and insulting is, I feel, not in the best interests of trying to be constructive and helpful to people on this site. If you do not agree with what I, or anyone else writes on the site, then it is quite acceptable to make your point without becoming verbally aggressive and counter-abusive in the process.
If I had for one moment, thought that I was, as you describe me, then I would agree with your sentiments even if I disagreed with the way you put them across. However, I hope I HAVE MADE MY POSITION CLEAR, THAT I TRIED TO ANSWER TBROWN’S POST AS COMPREHENSIVELY AS IT DESERVED.
Best wishes
Bill

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