Can others really smell an odor from your ileostomy pouch?

  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

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).

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.

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

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!

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.

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

Hi ShinyCD,

Did you ever have the takedown surgery (it was scheduled for August?)?  How do you feel now?

Gilda

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!

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.

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.