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madrikh52
(@madrikh52)
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15/06/2018 4:53 pm  

I haven't posted here in awhile but am looking for some ideas. I have had a colostomy for 5 years and it has not been smooth sailing for me.

FYI: I live in the US.

One issue I deal with is odor. It's not from leaking usually. I have odor almost all the time, in part because I have a very active bowel. I have 3 to 7 BMs a day and sometimes have to change in the middle of the night as well. I have IBS so am not a candidate for irrigation.

I liked Osto-Fresh but after ruining many items of clothing (it removes color), I decided to stop using it. I think Na'scent will also bleach fabric as it has the same active ingredient as Osto-Fresh.. I used M9 in the past so maybe I should try it again. Currently I use only Hollister's Adapt liquid deodorant which seems to do nothing. Same with Brava.

I am 98% vegan ( I eat wild salmon about 4 times a year), and keeping a food diary to find the culprits seems super overwhelming to me. Plus, because I always have odor, I'm not sure it would help.

I was disappointed (although educated) to see the information on the site about Colo-Majic liners not being biodegradable. Since I have such frequent output, they seemed like a god-send to me. Now, maybe not. I have used closed pouches for awhile (with liners), again, because of the frequency of output. I tried open ended pouches for the first year and a half or so, but never felt like I was clean. My stool is not formed...I work to keep it on the loose side because of my experience with obstructions.

At this point the odor makes me very uncomfortable, even in my own home. 

I am open to ideas!! 

Thanks in advance.

Marci


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john68
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15/06/2018 5:23 pm  

Hi Marci, When we empty yes depending on what we eat odour can be strong but we shouldn't have that all the time. My pouching system does not have a filter but from others I believe it can lead to odour if not working/blocked. Also have you asked any one (you feel comfortable with) can they find an odour. some times I have found a smell in my nose and have asked my partner and their is nothing their. Please forgive me for saying this but some times its easy to feel self conscious.

ileostomy 31st August 1994 for Crohns


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madrikh52
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15/06/2018 7:06 pm  

Thank you John for your reply. Yes, I have asked my husband and my daughter and they also smell it, though not as frequently as I do. I have s sensitive nose anyway and so I know I probably notice it more than anyone else. However, when I'm in a car or airplane or somewhere like a doctor's office- where there's no fresh air circulating, it's quite embarrassing to me as I'm sure others can smell it too.

Even though I don't think this is what you're suggesting, I did try pouches without filters to see if that would help and I didn't notice much difference ; plus I then had an issue with my pouch frequently filling with air.

I'm trying to get more information on options now because I am allergic to my wafer and seal, so will probably need to buy new products in the near future.

 


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VeganOstomy
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16/06/2018 9:09 am  

Hi Marcie, 

 

Odor is one of our greatest concerns, but maybe these few points will help to ease your mind.

Definitely try other pouch deodorants! They all seem to work very differently and some of g them have worked really well for me (M9 almost completely eliminates odor for me).

I'm addition to in pouch deodorants, you could also use an in-toilet deodorant too. One popular brand is poo pourri, although many more exist. You spray or place a few drops in your toilet water before emptying and it does a very good job trapping odor.

Odors when using a bathroom are normal for anyone. Have you ever walked into a public washroom that doesn't have an odor? ;) We tend to be far more self conscious about it, but I don't think it's worse than what I've smelt from other people who don't have an ostomy! 

You mentioned that you have a colostomy but your output is loose. Unless you're stoma has been made higher up on your colon, this might indicate that your gut bacteria aren't happy. As an example, when someone is on antibiotics, they may experience loose stools that smell very strong - that's caused by disbiosis in the gut. I'm not going to assume that's what's happening with you, but it may warrant some investigating through your doctor. Again, if your stoma is higher up then this might be totally normal, but I did want to mention that.

As for the pouch liners, it's going to be up to you to decide whether you want to use them or not. If they improve your quality of life and keeps things more affordable then that might be enough to make them worth using. 

Best of luck with everything! If you find a pouch deodorant that works well, let us know! 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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madrikh52
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16/06/2018 1:20 pm  

Thank you. The odor I'm most concerned about is what emanates from my pouch, not the odor from emptying. That said, I think I will try M9 again. I honestly can't remember how/ if it worked for me.

I intentionally keep my output loose: I use magnesium and vitamin C supplements for this (with my doctor's approval). I have a tendency to getting bowel obstructions, so it's important for me to keep things moving. I do take a high quality vegan probiotic daily, so hopefully my gut bacteria are happy campers (and eaters)! 

Thank you for your reply, for the ideas and for this site! I appreciate all of it.

Marci


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Marcie
(@shulmjs)
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16/06/2018 2:11 pm  

Hi Marci, This is Marcie... :-)    I empty a good 15 times a day.  But I find ,making sure that I change the  pouch every 3rd day.  IT is a fresh start.  I mean do u wear a panty liner for 3 days?  Nope.. Do  we clean ourselves daily? yes, Well the pouch that hold orders because of when one eats etc.  really should be changed more than some of us here.  We are in a new life, and what makes us comfortable?  We just got to use common minds and go for it.  Right?  Those deorants are expensive and can be sloppy through out our daily life. But eggs, fish cheese are rather on the smelly side.  Good luck.  But try my approach.. And I find a new fresh pouch does not make all that much noise..  As it does on the 3rd. day.. Lays flatter too..  New. Fresh is best...……..Marcie...………. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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VeganOstomy
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17/06/2018 1:13 am  
Posted by: madrikh52

Thank you. The odor I'm most concerned about is what emanates from my pouch, not the odor from emptying. 

There should be NO odor at all from the pouch unless you're emptying it. 

I see that you've tried filterless bags and still have odors. The next step would be to see if you are having any leaks. If everything still checks out and you continue to notice smells from your bag, I would contact the manufacturer and let them know - maybe there's something wrong with the bag itself. 

Now, if you're using pouch liners and notice this smell it could be that the liners are breaking the seal under your flange, which could definitely happen. Apart from making sure they are inserted perfectly, there's very little you can do about it. 

I intentionally keep my output loose: I use magnesium and vitamin C supplements for this (with my doctor's approval). I have a tendency to getting bowel obstructions, so it's important for me to keep things moving. I do take a high quality vegan probiotic daily, so hopefully my gut bacteria are happy campers (and eaters)! 

Great! So we can rule out a few things! 

Probiotics can also cause gas and smelly output (they do for me).  Have you noticed any differences with and without the probiotics? 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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LK
 LK
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17/06/2018 2:03 am  

Hi Marcie... welcome,  Linda here...I am back!  I  have  had a hard time logging in and now thanks to Eric and my son, I can take part again.  Missed you all.  Nice to meet you Marcie #2.  

I have been reading about your issues with odor and feel I should input here,  what happened to me.  My first scents of odor happened of course while in  hospital.  I was always so aware of it and I dreaded the  life I was facing.  Once home with my ileostomy in 2009,  I was still always smelling  odor.   However, I did realize that the same odor was much more evident when I changed the bag.  If it did not loosen on its own and leave me in a mess,  then I noticed small leaks and change my bag every 2 or 3 days or less.   I dealt a lot with gas also. I find that bread gave me huge gas problems.  Bread has yeast and yeast ferments.  Still to this day, if I eat bread I get extra gas issues.  Back to the odor,  have you noticed that the seal on your tummy to your pouch gets soft and changes color  around the edge of the hole your stomas goes into?  It caused  either big leaks or  little ones for me.  But, one day as I sat changing a new  bag... because it felt odd... I got brave and sniffed my seal,  the softened part.  There it was...big odor.  I have found that if I  make sure that just before I place on a new pouch I  dry my stoma and the skin around it with toilet paper as well as I can.  TP works best for this.  Now when I change my bag, I take three squares of toilet paper, fold them in half to make one and a half  double squares,  Then I fold that from one corner to the oposite upper corner,   sort of making a double triangle flag of sorts...I wrap this around my stoma when I am changing the pouch and  fold the tip under, the small weight of my stoma keeps it there, and then this contains what may come out when I am changing the pouch, I have to change that flag often during the change, helping to keep the tummy dry and clean and it also reminds me to dry everything very well.  I make several  of these ready for during the bag change, so I can change them quickly. Once the bag is on,  I concentrate on gently pressing around the edge of the hole and my stoma to make sure the seal is good and secure to my tummy, and around the hole there first.  Then I concentrate on the rest of the seal plate that sticks to my tummy. I also  measure my  stoma with that plate that comes with our bags once every two weeks when I am not well as weight changes will cause the size of the hole to vary. I have to work fast as my stoma gets wet very quickly.  But I have little to no problems with that kind of odor anymore.  I have found that making sure my stoma and the skin are as dry as I can get them has helped tremendously in this matter.   I  think because our  contents odor,  is somewhat in our faces,  we are more aware of the  odor. I still also use M9 in my bag.  I tried using the recommended 12 to 14 drops but never felt satisfied that I had controlled that problem so I raised the drops to 18-20.  I have  collected a couple  certain bottle over the years and I place the drops from the bigger bottle into a well washed out and dried smaller type drop  bottle.  I can control the drops much better with this bottle.  If you do not have one,  ask your pharmacist if they have a dropper type bottle you can beg borrow or steal from them.  Often they may charge two bucks for a new one, but it is worth it in the long run.  mine used to be a saline mist spray bottle for sinuses.  Allergies brought this bottle into my life.  I count  every drop that goes in the bag and make the bottle last one month.  At forty bucks or so a month for a bottle, this does help control the usage.  Emptying up to 18 times a day.  Active bag changes are real fun!

I also rub the deodorant around the inside of the bag in between my hands to help with remaining odor in there too.  Do you rinse your bag between emptying it?  I do this twice when I empty my bag.  when I am out and need to empty, I always carry with me a regular  empty water bottle and fill it with fresh water in the washroom to  rinse the bag there also.  An empty bottle lessens the weight of solutions you have to carry.  I use the individual lubricating deodorant,  Adapt,  for when I am away from the house just for convenience sake and again,  lighter weight to carry on me.  I am in love with zip-loc baggies for putting these things in as they are less bulky all around.

I hope this is helpful to you in some way.  Eric is awesome and full of ideas and information and knowledge.  Watch as many of his videos as you can,  you will certainly find them helpful at some point in your new journey.  Stay well.

Linda

Linda


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madrikh52
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18/06/2018 9:31 pm  

Thank you Marcie, Eric and Linda. I appreciate all of your ideas.

Eric, I don't think leaking is the cause. Usually I get burning right away when I have a leak, so I change as soon as possible.

I will take a break from my probiotics and see if that makes a difference. 

I hadn't thought of the liners interfering with the seal of my pouch but that makes sense. I'm still waiting to finish my skin allergy testing, but it looks like a different system w/o liners may be in my future.

I currently put on a new pouch daily. I tried rinsing my pouches in the past but could never get the smell out. 

Marci


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Cheryl Fardon
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20/06/2018 7:37 am  

I haven't heard of pouch liners before. I too am conscious of odour and as I wear my bag horizontal I dont like using deodorisers in case they come into contact with my Stoma. Was thinking of doing an experiment with some fragrant oils where you just add one or 2 drops.

Cheryl

 

cc

 

 


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Marcie
(@shulmjs)
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20/06/2018 12:23 pm  

Like smoking a cig.  You think if u spray lots of perfume, afterwards-it will cover the smoke smell-nope. 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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