Can others really smell an odor from your ileostomy pouch?

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Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 10/31/2010 9:55 AM (GMT -6)   
  Hi Everyone,  I know I have asked a zillion questions about Ostomies but I am getting so close to making my final decision I have to know as much as possible.  When I tell family or friends I may have to have an Ileostomy they look and act absolutely horrified!  Most of them won't tell me why they think my life will be ruined but a couple of them said that others can detect a bad odor coming from someone with an Ostomy.  I am taking a big chance even having an Ileostomy in that numerous doctors have told me they still (after tons of tests), don't even know exactly what is wrong with me.  So, I am at the point where I cannot continue to live the way I do (either in bed with extreme fatigue or in the bathroom) and I think I will go for the loop ileostomy to see if it helps.  I am very concerned about the odor problem though!  What can those of you with Ileostomies tell me about this?
I do have a couple of other questions also:
 
1. Is it difficult to plan and always have the right supplies with you?  What happens if you end up someplace where you can't access your supplies and your bag breaks or something leaks?  does this happen also?
 
 
2. How often has it happened that you all of a sudden notice that you have a bulging bag that is obvious to others?
 
3. Do you ever worry that your insurance co. will stop covering the costs of your supplies? 
 
Thanks again for everyone's help!
 
Gilda
Thanks,
Gilda

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/31/2010 10:18 AM (GMT -6)   
Gilda
I have a permanent leostomy. As for smell, the first thing I did when I came home from the hospital is get my dog on the couch next to me. She never tried to smell my pouch and never has. If a dog doesn't detect an odor there is none.

I had several "accidents" before my surgery. None since. Others have, so it can happen.

Bulging bag? go in the restroom and fix it......

Read my topic "support" and go to the site that I menton.

Dan

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 10/31/2010 10:28 AM (GMT -6)   
I've been around tons of people since my operation and no one as ever told me I smell. I started using M9 (ostomy bag deodorizer) last month because sometimes in the morning the smell would be awful. This is the only thing my fiancee complains about is the smell in the bathroom in the morning. Lysol Neutra Air Citrus will make the smell go completely away. I don't smell, although I do use cologne just in case.

When I went in for my stoma placement they gave me a whole bunch of stuff including a travel bag. I normally have my travel bag in my car which I carry about one or two replacement bags, one or two wafers, ostomy scissors, stoma powder.
I've only had a bag break on me one and that was at work and I was very lucky that nothing got on me. It was my belt that cause the bag to separate from the wafer ring. All I did is went out to my car and changed the bag. Everyone at my workplace knows I have a bag so they don't really care for me going to the restroom as much or anything.

When I'm out in public I tend to go to the restroom more than the others just because of the bag. Although I've never had anyone say anything about it even when full. I never let it get completely full though.

I have individual insurance and I thought they would drop me once I started the Remicade, but surprisingly they called me up personally and told me that all I would have to pay is the $50 copay for the office visit and they would cover the Remicade infusion without me paying my deductible ($5000). I'm switching to my company's health insurance policy next month though so I won't have to worry about them dropping me (and it is a $500 deductible thank god).
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Temp Ileostomy and colon removal surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Takedown surgery - 8/?/2010

Christine1946
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Date Joined Aug 2008
Total Posts : 5962
   Posted 10/31/2010 12:24 PM (GMT -6)   
     My bag burst during a show and I didn't even know it.  That was the first and only time something like that happened.  My husband was sitting right next to me too.  No odor at all...could be the fact that I ate a lot of wintergreen mints prior to the show and that is exactly what it smelled like tongue .  Good thing I didn't eat fish.  Anyway, I switched from the Hollister to Coloplast bags and the Coloplast are much better, never had one break.  No odor whatsoever.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 10/31/2010 1:00 PM (GMT -6)   
Gilda,

it doesn't smell at all.

accidents rarely happen, but when they do, you just take care of it, just like you change a baby's diaper - it's looks the same to me.

if i have a bulge, then i go to the b/r and empty. before i got my ileostomy, i used to think - OMG it's probably so imbarrasing if it shows, but now i realize it's not that big of a deal. first of all, ppl don't really notice. second, although right now ppl at my new job don't know anything about my bag, i don't mind if they found out. i'm not ashamed of it at all. and if i'm on the street, then i find a b/r, but if th bulge is too big, then till i find a b/r, i cover the bulge with my bag (the bag i take with me that is lol).

about insurance - our government in israel set a new law just couple yrs ago that ostomates don't have to pay anything for ostomy suplies..... YAY.
Hodaya
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 10/31/2010 2:13 PM (GMT -6)   
Hi Gilda,
To answer your questions:

1. No, it doens't smell. Just when you empty. Similar to when you actually go poop. Leaks are rare. I always keep an extra pouch and wafer with me just in case in my purse, but don't often even think about that.

2. I usually empty before it is really noticeable, but even if I don't, no one EVER notices. Even when I think they should notice, they don't. Most people have MANY other things to focus on and also, most people don't realize that ostomies exist.

3. Yes, I sometimes worry about this, but not really.

As for the people who act like this is the worst thing ever, if they had to live the way you are living, they'd think twice. When I was about to have my surgery, one of my friends said, "But you'll never take a satisfying poop again!" And I laughed, becuase I don't think I'd taken a "satisfying" poop in about 10 years. I'm so happy to have my ostomy.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 10/31/2010 7:44 PM (GMT -6)   
When I first got my ileostomy I was paranoid and always thought people could smell me, but my good friends and family have all said they have never smelled a bad odor from me at all. Also the only time I ever had bag problems was twice I had leaks and that was soon after my surgery, one time was because I didn't put the bag on properly the other was because my stoma size had changed and I needed to change appliances. But before I had my ileostomy done I was having accidents every day and could not leave the house at all, I couldn't even make it from my lounge room to my bathroom without pooping myself, it was hell living like that. My life has improved big time with this and would have had it done years ago if I knew then what I know now. Take care
Doreen

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/31/2010 8:02 PM (GMT -6)   
NewShntCD
Why is your fiancee in your bathroom in the morning??

Oh, never mind.......

Dan

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 10/31/2010 8:10 PM (GMT -6)   
unless you have a leak noone will smell, or i guess if someone wiht a super super strong sense of smell stuck their head down your pants they might smell it, but probably not :D

i take extra supplies in my pocketbook, and a change of clothes in my car.

there have been times that i have forgotten i have a bag and forgotten to empty and then realized it was so full! but noone has noticed. And htink about it, as a general rule people aren't lookign at that area anyway, and if they are and they see a bulge they aren't gonna think its an ostomy, they will think it's some kleenex or something. i like to tell this story a woman told a while back, she tried on some jeans for a friend and asked if she could see the bag, the friend said, oh yes im sorry, the woman asked where she could see it and she pointed to one of the woman's pockets. but her ostomy was on the other side! what the friend saw were some kleenex the woman stuffed in her pocket!

i worry about my insurance sometimes, but even without it, ive found that the supplies aren't too bad. I could pay for them if i had too, and there are programs out there to help people who can't afford their supplies.


Bottom line, sounds like you are miserable now, so yes you might get an ostomy and you might not like it. but you KNOW you are unhappy and don't like your life right now!!! and there isnt a person on this board who regrets their surgery, most of us only regret we waited so long!
so get a bag and get your life back!
good luck!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 10/31/2010 8:18 PM (GMT -6)   
summerstorm
Your last paragraph..........very well said

Dan

pswift520
Regular Member


Date Joined Sep 2010
Total Posts : 91
   Posted 10/31/2010 9:17 PM (GMT -6)   
I use peroxide in my bag and I never have a smell, even when I empty first thing in the morning. I just add just a little bit more at night to my bag before I go to bed. My family said they could really tell the difference since I started using the peroxide.

ucfree
Regular Member


Date Joined Oct 2005
Total Posts : 291
   Posted 11/1/2010 1:28 PM (GMT -6)   
I was scared of an ostomy.
I tried the JPouch because I had that option.
Pouchitis was terrible.
I have an ileostomy now.
I have my life back and it's an amazing feeling. More energy, no bleeding, no meds.
I can keep up with my 1 yr old daughter!

It isn't the ideal situation, but it sure beats where I was before.

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 11/1/2010 2:47 PM (GMT -6)   
Thanks to all of you for your responses! It is so great that people who have "been there" will take the time to help those of us still trying to make such an important decision. I did find out today that our insurance will remain the same into the new year so I don't have to feel rushed about getting this surgery. You see, maybe 30% of the time I feel pretty good (like today) and on those days I say to myself, "maybe I am getting better, maybe I shouldn't have the surgery." The decision would actually be easier if I had UC or Crohn's because then my doctors would be in full support of me having an Ileostomy. Right now they say, "well it might help, we aren't really sure." I did see a motility specialist and he is quite certain that i have pelvic floor dysfunction; that is why I have to go the the bathroom so often; I don't empty all at once. He kind of "scooted" me out of his office without really telling me if he thought an ostomy would be helpful or not. I don't know how I let this happen; I must have been really out of it! He is the one who did a blood test (on the spot) for "gastrin" and also wants me to do a 72 hr stool collection (disgusting) to have it tested for fat content. He said he thinks that maybe my intestines aren't absorbing fats and maybe other nutrients. The thing is; he never did tell me what he would be able to do about any of these problems or if an Ostomy would help.

Anyway, I think that most of you are telling me you live quite a normal life now and that your energy level is pretty good. My doctors say my energy is probably so low because I don't eat much but food = diarrhea or else intestinal pain if I take Lomotil or Vicodin to slow things down. I am thinking, even if I had hight input into a bag . . . . as long as it wasn't uncomfortable or a real bother (having to empty too often); I would eat more and then I would probably feel much better!

I know all of you may be getting tired of all of my questions and concerns but your input does help me! I am "almost there" in making my decision; one doctor does want me to try bio-feedback first (bef. deciding on surgery) but no one seems to have success with it. ALL COMMENTS AND SUGGESTIONS ARE VERY WELCOMED!

Gilda

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 11/1/2010 3:05 PM (GMT -6)   
I thought I was getting better during the whole 9 month flareup. Now that I've had my surgery I look back at all the pictures during the flareup, especially the day of my surgery, and I was really bad off. The day of my surgery you could see all my ribs, my collar bone, and my entire spine. There was no body fat left on me went I went in.

I didn't realize how much UC and the prednisone did to me until after the surgery, and if I had to do it all over again I would.
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Temp Ileostomy and colon removal surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Takedown surgery - 8/?/2010

Gilda
Regular Member


Date Joined May 2009
Total Posts : 194
   Posted 11/1/2010 3:20 PM (GMT -6)   
Hi ShinyCD,
 
Did you ever have the takedown surgery (it was scheduled for August?)?  How do you feel now?
 
Gilda

NewShinyCD
Regular Member


Date Joined Oct 2009
Total Posts : 474
   Posted 11/1/2010 7:17 PM (GMT -6)   
I didn't have it yet. I'm going to wait until after tax season to have my second surgery.
Plus I like the fact right now I can eat very spicy food without the fear of butt burn :D
21 y/o male livin' in Georgia. Diagnosed with Left-Sided Colitis in 2002; re-diagnosed with Pancolitis in Nov. 2009.
June 2010 I beat UC by having surgery.
Drugs tried: Just about every 5ASA medicine, enemas, prednisone, turmeric, fish oil, Remicade, psyllium seed powder, Metamucil.
Unable to take 6MP.
Temp Ileostomy and colon removal surgery - 6/2/2010
Readmitted back to hospital because of blockage (my fault cause I ate Steak n Shake 3 days after being released from surgery) - 6/10/2010
Takedown surgery - 8/?/2010

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 11/1/2010 8:47 PM (GMT -6)   
gilda-beware, somehow that sneaky colon knows when you are planning on taking it out, and it starts behaving! i don't know how but alot of us have had that happen. And it's normal to second guess yourself, but like newshinycd said, alot of times you dont even realize how very sick you are, even when you feel good, until you really are better!
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

polishdan
Veteran Member


Date Joined Mar 2010
Total Posts : 1595
   Posted 11/1/2010 9:44 PM (GMT -6)   
summerstorm
What you said about the colon knowing is true. When I had UC and we were going to any kind of function (wedding, funeral) I would wear rubber underwear over my whiteys. I never had a problem. It hink my colon said "this would not be much fun to erupt now, I'll wait for another day". I really think it put my mind at ease and I could relax a little.

Dan

MMMNAVY
Veteran Member


Date Joined Jul 2006
Total Posts : 6927
   Posted 11/2/2010 9:04 PM (GMT -6)   
There is a person on the CD forum who swears by eatting papayas for removing the the poop smell when one goes to the bathroom. I do not know if it help, but it is interesting to know if I chose to think about it.
Forum Co-moderator - Crohn's Disease/Thyroid Disorders: All comments have the caveat contact your local health care provider.
I will find a way or make one. –Phillip Sidney 1554-1586
All that I am and all that I shall ever be, I owe to my Angel Mother.
The Bucket List- Have you found joy in your life? Has your life brought joy to others?
Make sure your suffering has meaning…

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1251
   Posted 11/2/2010 10:06 PM (GMT -6)   
Today's pouches are odourproof and provided it's on properly (and you haven't developed a leak) no-one will be able to smell anything.

When you empty, it's another story (but then most bowel intact people have that problem too!) There are many ostomy deodorisers out there for you to try or the cheaper version is 3% hydrogen peroxide available from the first aid section of your supermarket which takes away the odour completely.
Ileostomy for 34 years due to UC. I had my surgery at 10 years of age.

Moderator of the Ostomy and Psoriasis Forums

_______________________________________________

I'm not a complete idiot - some parts of me are missing!

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 11/3/2010 4:39 AM (GMT -6)   
Gilda,
Don't feel bad for asking questions! Most of us (unless it was emergency surgery) were there once! We understand the uncertainty. But hopefully you can see how happy we are now.

You said something about how even if you had high ostomy output at least you'd probably eat more and feel better. I thought the exact same thing. The worst part about the diarrhea for me was worrying about getting to a bathroom. This is INFINTELY better. Even if I have a day of high output or "diarrhea," I can still go about my business, and I am so thankful. SO thankful.
Stephanie, 28 years old
Diagnosed with Crohn's Colitis March 2000
Possible diagnosis of IBS-D
Total Proctocolectomy and Permanent Ileostomy 3/18/10! :)
Blockage/Ileo revision 6/8/10 :/
 
Tried: Asacol, Remicade, 6mp, Humira, Xifaxan, Apriso, Imuran, Rowasa Enemas, Colocort Enemas, Psyllium Seed Powder... Tried Probiotics: Align (with no change except bloating) and VSL #3 DS (AWFUL diarrhea).
 
Currently taking: Prenatal Vitamin, Vitamin B 12 Complex, Biotin, Vitamin D, Calcium, Flomax (for urinary retention). 

not creative
Regular Member


Date Joined Mar 2007
Total Posts : 469
   Posted 11/10/2010 1:50 PM (GMT -6)   

I have an end sigmoid colostomy.

Right after my surgery, I toted tons of supplies around with me everywhere in case of leakage issues, but as time has gone on and I am more adept at changing, I just carry one extra set of supplies. It works out and takes up little room. I have never been anywhere where I could not easily access what I needed to change and feel secure. It does take some planning, but it’s not difficult.

It has happened a few times that my bag has been fuller than I would like but no one has ever noticed. I have even asked people if they could tell and they said no. (This was honest people like my mom and husband)

I happen to have really good coverage ($0 copayment) through my job with the state so I don’t worry about it.


Laurenne, 26 Graduate from University of California, Davis. BA-Anthropology
Dx'd w/ IBS and CD in 2002. Was in flare from 2006-2010 with almost no relief from any meds I tried.
On: Cimzia, Zoloft, Abilify, 6MP
3-9-10: Total protectomy and Sigmoid colostomy installed. Haven't spent more than 2 minutes on the toilet since- it's fantastic!
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