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That Awful Smell....

Posted by Franicaa, on Sat Jul 03, 2010 7:28 am
I have an ileostomy, so other people that have one will know exactly what I'm talking about when I say "that awful smell!" I'm not saying that people with colostomies don't get a stink, but I am yet to smell anything as bad as what comes out of bag! The main culprits of "The worst smelling output"-for me, are; fish, too many iron tablets, sausages, eggs, and other things like garlic and onions (as well as producing vast amount of wind!)

I've tried so many deodorisers and mint drops eating less of these foods and even drinking peppermint water after eating these foods, the only problem is, I can never shift the smell! I've even tried the output thickeners but they just made it worse! Everyone here will know exactly what I'm talking about! Especially people with ileostomies, I get teased by my family for stinking out the whole house when I use the toilet!

I would love people to give me any more ideas whether it's stuff I should eat or stuff that I can put in my bag when I change it, I'm open to any ideas just to help mask the awful smell, I'm hopefully going to Uni this time next year, and I don't want to have to pay extra for my own bathroom, but obviously I don't want to stink people out all the time! Please give me any ideas or things that have worked for you!!
Reply by Roch!!, on Sat Jul 03, 2010 9:05 am
Hi ya, i also have an ileostomy and like you have the same problem, so your not alone here! Your right in saying that its worse with certain foods! The only thing i can suggest is do what i do...   keep a spray of impulse in the bathroom!  "into glamour" is a nice one.  Take care. Roch. X
Past Member
Reply by Past Member, on Sat Jul 03, 2010 9:23 am
So with your family teasing you, is that like they're saying their sh#* don't stink!

Personally mine don't smell half as bad as when it did when I had a bowel!  It is also the location of your new bum too!  Basically not far from your nose, naturally you will notice the smell more than where your bum used to be!

My stoma nurse actually told me that the colostomy is far more of a stench than the ileostomy because the colostomy is the large bowel so you could be worse off!

Of course any smelly food that even makes people with intact bowels stink will no doubt make us ileos more so, I find that with all the foods you mention, yes a tad smelly, but have definitely smelt far worse when my bowel-intact brother leaves the toilet!  

I notice that if I have indulged in chocolate or sweets, the output is just a funkier version of same.  And I have been told that marshmallows not only slow the output but sweeten the stench!  Also have heard some people put tic tacs or mints in the bag itself so perhaps give that a try.  The ostomy supply companies all have deodorisers you actually put in the bag too.

Family and friends have never mentioned to me that I smell but then they may just be polite!  But then I probably wouldn't care anyway because like your own family I no doubt think "my sh#* don't stink"!

Hope you find a solution Franicaa!

Jo x  
Reply by panther, on Sat Jul 03, 2010 11:23 am
You can put a few drops of peppermint oil in your bag when you change or empty it.  I work with someone who still has a fully working large bowel, I try to avoid going too the loo for as long as I can after him, trust me the smell is far worst than mine.
Reply by jayski, on Sat Jul 03, 2010 12:18 pm
I use many, many bottles of M9 (made by Hollister). It works really well for every food except fish, which is always nasty! I use much more than the instructions specify (yeah, 9 drops, right!). I keep mine in a squeeze bottle. In fact, if you really want to splurge (it's not cheap), you can even use enough that it'll work on fish. I've tried cheaper alternatives, but none of them worked.
Reply by Franicaa, on Sat Jul 03, 2010 1:07 pm
Thanks for all the help, I'll definitely try the marshmallows, although I'm not really a fan, nut also fruit has seemed to work slightly, pineapple, banana (though I wouldn't advise this because sometimes is can make it worse!)

And Jayski, thank you I will look, luckily enough in the UK we get everything free so I'll try and track the deodoriser down!

And oust doesn't work at all!!!
Reply by Pinky, on Sat Jul 03, 2010 7:58 pm
fish, too many iron tablets, sausages, eggs, and other things like garlic and onions (as well as producing vast amount of wind!)

True for colostomies too!
I read this in the Phoenix magazine and this is what I do: place a eucalyptus cough drop or two in the pouch.  It kills off just about any odor (I don't know about iron tablets).  
Also, if you have it in the UK - a product called "Beano" works wonders for gas.  Take two tablets before eating a meal with the offenders in it.
I also noticed the longer I had my colostomy (18 months now) the less bad the contents smell (usually) - except I had a really bad episode about 2 months ago with Mexican refried beans from a restaurant - never, never again.   Very Happy
Be careful with fresh pineapple - it once blocked my ostomy.  
Good luck in your university!
Reply by mooza, on Sat Jul 03, 2010 8:16 pm
Use the Hollister gel it gives out no smell at all if u can get it in your country or any of the many nodor or pills for the pouch we get all this from our ostomy association get in touch with me if u can we have sooo much we get for free .. Maybe not too much onions etc cheers mooza australia xxxxxxxxxxxxxxxx
Reply by gutenberg, on Sat Jul 03, 2010 9:08 pm
HI there Franicaa, I too have an ileostomy and it was not so much my wife or daughter in for a visit and kept quiet about the smell but it sure bothered me so I set out to do something about it, namely, put a high powered exhaust fan in the bathroom, now this might not sound like much but I had gone through 4 operations, had three heart attacks and decided I could do this myself. This was in July and the heat in the attic, and up and down the ladder, trying to figure out the wiring, sweat running into my eyes and just lucky I didn't electrocute myself in the process, anyway I got the job done, right proud of myself until the next day when I tried to get out of bed, Whooooh, what the hell, every bone in my body hurt so much I had to roll out of bed for the next four days and still in pain but now after using the bathroom I leave the fan running for a while, then I added a room deodorizer which helped somewhat, then I read on one of the forums about a Hollister deodorizer and made a beeline to the drug store and sure enough they had some in stock which I found a really big help, it would have been nice if I heard about this stuff before going through all that trouble, but my wife is happy and when my daughter drops in she doesn't have to ask if its safe to use the bathroom, live and learn, I also have a exhaust fan in my computer room and if nobody is home I can expel air and in a few seconds the smell is gone, before I used to use a fan in the window which I could put in reverse and that worked pretty well.
Oh, the trials and tribulations of being an ostimate, wot. Ed
Reply by bikerboy, on Sun Jul 04, 2010 10:51 am
Personaly Im glad to still be alive.So the smell isnt any worse than being around a bunch of toilet sitters.Of course I live alone and like to think my smell is unique,and its mine.But I also agree that an exhaust fan in a window orceiling keeps the smell down.In these warmer months I spend more time outside.The smell is a small price to pay for getting the upperhand on cancer.
bikerboy greg
Reply by gutenberg, on Sun Jul 04, 2010 12:15 pm
Bikerboy: your first seven words says it all. Sometimes I think people think we had a choice, I remember one guy saying "I'D rather be dead than having to wear one of those bags", Oh yeah, I'm damn sure if the time ever came and he had to make that decision he would be singing a new tune, our lives may be complicated at times but it sure beats the hell out of the alternative, right? Ed.
Reply by lexus1, on Sun Jul 04, 2010 12:31 pm
NA`SCENT !!! I just found this. They have website (Google Na`Scent) get a bottle for about $16/120z)and change your life. It works for fish, broccoli, and espescially shrimp. It is an odor and bacteria eliminator.you squirt a bit into pouch and move on. Much better than M9. Not a deodorant, but it overoxygenates the stuff and so it kills the bacteria (and then the odors) I'm taking a lil 2 ouncer with me everywhere. They will send a sample (2 oz) so SAVE that bottle! Hope this helps you hon. I have had my ileo for under 3 years and I'm still learning. lex
Reply by three, on Sun Jul 04, 2010 2:41 pm
Thanks lexus1,
It's always fun learning new things.
Here's the link to the free ($1.99 shipping and handling) sample page:
http://www.nascent4u.com/samples.htm
Reply by Roch!!, on Sun Jul 04, 2010 4:07 pm
Thankyou for the info, i have just ordered the sample! Cheers... gona give it a go! Roch. X
Reply by lottagelady, on Sun Jul 04, 2010 4:56 pm
Hi Roch,

Did you find a UK supplier or did you order from the US?

Rach xx
Reply by Roch!!, on Sun Jul 04, 2010 7:46 pm
Hi ya Rach,
I ordered it from the US. It does seem to sound like good stuff! So thought i would give it a go... you dont know until you try ay! Take care, Roch. X
Reply by Scott Chance, on Mon Jul 05, 2010 5:40 am
Hi Franciaa,

I don't know about stopping the contents from smelling (I've only been "with bag" for 10 weeks or so?) but if you need something to get rid of the smell after you've emptied, the range of room sprays from Heathcote & Ivory work much better than any air freshener I've tried. I don't know why a room spray works better than actual air freshener, but the Heatchcote & Ivory sprays are made with essential oils (or so I understand) so perhaps that is a factor.

They cost £5.99 a bottle but worth every penny.
Reply by Lobster, on Mon Jul 05, 2010 9:38 am
I find that lighting a couple of matches and straightway blowing them out is a pretty effective odour eliminator.
Reply by joe shenton, on Mon Jul 05, 2010 2:47 pm
Hi Franicaa
Had the same problem now I use ( No-Roma ) two drops in the bag before use code 833021
From Salts, when changing your pouch spray the room with Auricare odour eliminator
Good gear
                     good luck
Eli
Reply by Eli, on Mon Jul 05, 2010 8:06 pm
I haven't found a way to get rid of the smell, but I can give you some advice if you think University will be a problem. Before you register, take a walk around and look for public buildings/restrooms in the neighborhood. I'm jewish, and I found a synagogue with a bathroom on a separate floor a few blocks away from my college that I use to change sometimes. Also, don't eat for a couple of hours before classes. Not that convenient but more convenient that the alternative.
Reply by bikerboy, on Mon Jul 05, 2010 8:44 pm
Im glad you think like I do.In my brief 23 months with my bag buddy Ive had many folks say the same thing " Id shoot myself if I had to wear that".And of course I tell them they dont know how much fun it is,and how much better it is to have one.I give them the 15 reasons why I like my buddy.And I always add  that its not like I asked for it but its what I woke up with.Its funny how many folks Ive met have gone in to see their doc and get a check-up.
bikerboy greg
Reply by soulful, on Mon Jul 05, 2010 9:42 pm
Hi Franicaa,

My friend has an ileostomy for 30 years and she chews a few Devrom tablests every day.  She says they are great.  When she is going out on a date, she just takes a few more.  You can ask them to send you a sample at :
www.devrom.com.  



Good luck.  I hope it helps.



Sincerely,

Aileen
Reply by hambone, on Mon Jul 05, 2010 10:05 pm
I do not have a big smell problem, but are so impressed with the idea, of putting a few drops of peppermint into the bag. Nice to get feedback with every day living.
Reply by zoe54, on Tue Jul 06, 2010 12:58 am
what are unis?
Reply by zoe54, on Tue Jul 06, 2010 1:00 am
I agree with you totally about the cancer thing!  I look at things so differently now.
Reply by spartan, on Tue Jul 06, 2010 11:31 pm
Hi. I use a Hollister product called M9. I use about 18 drops. It works pretty well. When I know I am going to have fish or other odor causing foods, I use more drop. It works well for me. I hope this helps
Lin
Reply by Lin, on Sat Jul 10, 2010 12:58 pm
i just have to say a big THANK YOU  to Pinky for the idea about the Eucalptus cough drops in the pouch,  IT WORKS-- I just had to give it a try,I find the pouch deodrants just have a different terrable smell of there own, so I don't really use them much, but this really work.Once again thankyou for the idea.
Reply by Teddi Bear, on Sun Jul 11, 2010 7:56 am
Hi All.

I have read all your comments and I am pleased to advise that I know an absolute resolution for this problem!!

If you are in the U.K. you can get this!!! - Not sure about other countries though.

I have had my Ileostomy for 35 years - and I found this product YEARS ago.  It is called:

NO ROMA and it is made by SALTS UK.  

http://www.salts.co.uk/

Contact Salts if you can't find it on the site.

It is available on Prescription in a larger bottle and also comes in "handbag or pocked-sized" small squeezy bottles that are very discreet and perfectly sized for a weekend away supply.  I keep one of these small bottles in each handbag, one in the bathroom, etc - so it's always avaible for me when I need it.  The liquid itself has NO SMELL - so you don't leave the loo smelling like someone has been peeling a bag of lemons in there!  lol.  I am devastated if I go out and have "forgot" to put a squirt in a newly applied bag!!

The instructions are to place a couple of drops in the bag, but I put a small squirt in.  I ALWAYS use this when I am going out - especially when staying at friend's houses.  I should HATE to leave a bad smell in their bathroom!!  Make sure you squirt the liquid (about 7-8 drops equivalent I would say) it in the BOTTOM opening of the bag, as its not a good idea to get these deodorising liquids on the skin.

When you first open your bag to empty it, there IS a smell, but as soon as it has hit the air, the smell disappears -- and you can leave the toilet confident that you are not leaving any nasty smells behind - just no smell at all!!  Much better than the obvious spraying (obvious to all) of perfumed ostomy sprays to "cover up"!!!

The only "downside" of NO ROMA is that you need to place another squirt in the bag EACH TIME you empty, as it only lasts the one application.  I find it well worth the effort when going out, especially to pubs and clubs.  I don't bother to use it when there's just me in the house and I'm staying in.

It's amazing stuff!!  Do try it.  I'd like to hear from you when you have.
Reply by beatrice, on Mon Jul 12, 2010 1:28 pm
Poo is poo - it all has smell (but ileo less than colostomy from what I've been told - I have ileo). I'm just not that concerned; certainly not anymore than when I had my colon and years of UC, pooed the 'normal' way and had to deal with that odour.

Think about going into a bathroom after a 'normal' pooer has been in? Why do we think ours is worse? Is it really?

I don't use any drops or such. But if you are using products, be careful about it touching the stoma ... apparently some can irritate.
Reply by Dixiechick, on Mon Sep 06, 2010 9:07 am
I have had an ileostomy for 30 years, and love Devrom tablets. You chew 1-2 when you are eating something that will cause an offensive odor, and that usually takes care of the problem. They do not taste bad, and I find that easier than using drops in the pouch. Hope this helps!
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