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2b ColonFree
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Date Joined Nov 2008
Total Posts : 2603
   Posted 4/4/2011 7:05 AM (GMT -7)   
hi all,
 
i don't know what's gotten wrong with my stoma/appliance lately. i've had my loop ileo for 9 mons now and i never had problems with it smelling. but in the last 2-3 weeks it ALWAYS smells! well 80% of the time to be precise. it's aweful.... smells to high heaven.
 
first time it happened i thought it's a leak and changed everything. when i changed, i saw there was no leak, but it helped (tho for only 1 day, the next day it smelled again sad )  so i thought maybe there's a need to only change the bag, so i did, but it didn't help, the smell was still there. and it's pretty strong and i have no idea what causes this to happen all of a sudden, i didn't have any kind of smell problem up untill now, what went wrong now????
 
does anyone have any idea what it could be? i use coloplast sensura 2 peace for the last 6 mons or so and been very happy with it untill now....

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/4/2011 7:18 AM (GMT -7)   
Do you use the m9 drops? Is it the output that you are talking about? Or that your bag all closed up, smells?
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/4/2011 7:24 AM (GMT -7)   
we don't have the M9 here, tho i can ask my sister to send them to me. it smells even when the bag is closed up, but i think it's worse when the bag is full. i'm now sitting here and choking from the smell. i know its not a leakage. and i changed my bag only yesterday. i have no idea what this smell is all about. could it be the filter?
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

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/4/2011 9:16 AM (GMT -7)   
Hodaya, do you have a different batch of wafers and bags that you can try? Maybe the filter is defective, maybe the wafer is leaking a teeny tiny bit and you can't see it, or maybe the bag has a hole in it? Either you have on a defective product or you are leaking and you can't see it????

If I was you, I would open a new box of wafers and a new box of bags and put on an entire new set up. Then see if you can smell with this one.

There was one time, me and husband both could smell my output. I changed everything, and again, we could smell the stench again. So, I tried a new batch and no problems. I threw away the old batch so that I never used them again. They were leaking from somewhere or else the filter was defective, but we never figured it out.
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

answers4me2
Veteran Member


Date Joined Dec 2008
Total Posts : 1325
   Posted 4/4/2011 9:26 AM (GMT -7)   
Have your sister send you some m9 drops. I use them religiously now when I am at home, especially at night when my output tends to stink more. YUCK Now, I have no odor from the bag when I empty. My husband can even be in the bathroom with me while I empty.

OMG, I can't believe I actually empty my bag in front of my husband! HEEHEE But I do and it is no big deal. My stoma also farts at the WORST times, like during sex. WOE, talk about embarrassing.

How are you doing? I am considering having the surgery to have the hernia repaired, total colectomy, possible tummy tuck, and having the temporary loop ileo turned into an end ileo. I see my doctor on the 21st to discuss this. I was contemplating waiting a year or two, but I doubt I will do this because I am not getting any younger.

Didn't you say you had a web cam, like Skype? Because my kids have an account with tiny chat, oovoo, and skype? We could talk for free. WOOHOO, let me know. I am off work all week for spring break,
Diagnosed w/colonic inertia, obstructive defecation syndrome, anismus, rectocele, and intussusecption
2005-hysterectomy w/pelvic prolapse repairs
2006-sacralcolopopexy
2010-subtotal colectomy, rectopexy, and temporary diverting loop ileostomy. Parastomal hernia discovered in November, so more surgery, probably end ileostomy with relocation of stoma.

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/4/2011 10:00 AM (GMT -7)   
crap..... i wrote a whole post and poof, it was gone! now i had to write it again.

yeah i know we can talk for free on skype! i don't have it, but i should, just have to figure out how to do it...??? do you know how? it should be awesome!

i know you're having surgery on May, right? oh hope all goes well for you hon!

meantime, i changed my bag and it helped. but i used to be able to wear a bag for 3 days and it never smelled. and even after 3 days it didn't smell, but i changed it anyway. now it smells few hrs - day after i change :(( don't know why.

the thought of maybe the whole batch of wafers and bags are defected did cross my mind and maybe i should try a new box of wafers and bags. right now i don't have new boxes. i'm supposed to receive my supply tomorrow.

could it be b/c i started taking fish oil daily..??? but even so, it shouldn't matter, should it? no one is supposed to smell anything as long as the bag is closed, no matter what we eat/drink. so i don't know. but i decided to quit taking the oil fish for a while and see if it solves the problem. but if it doesn't, i'll ask my sister to send me the M9. or maybe i could try peroxide too. i just never had any smell issues and this really bumms me :(

i'll let you know when i have skype, if i manage to figure it out.
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

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/4/2011 10:35 AM (GMT -7)   
Tracy, i've got the skype. what's your name there so i can find you?
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

Blueheron
Veteran Member


Date Joined Feb 2010
Total Posts : 720
   Posted 4/4/2011 11:58 AM (GMT -7)   
It could be a bad batch of bags. I had some Coloplast Assura standard wear one-pieces that leaked around the filter. Not through the filter itself, but through the seam where the filter was fused into the bag. It was smelly and took me a day or two to figure out since it was just the slightest amount leaking out. Not enough to make a mess, but enough for odor. I put waterproof tape over the seam and it did the trick. I was discontinuing the use of those pouches anyway as I was only using them for a short time when I had a wound vac and was changing my pouch every other day. The adhesive on that one was really easy on my skin. However, because I didn't order another box, I never knew if this was a bad batch or a common problem with that pouch style. It has never happened with any of my other Coloplast products. I would examine your pouch closely and see if there might be a teeny tiny defect somewhere. And I mean small-- the leaky seam on mine was the size of the top of a pin but boy did it smell.
-Officially diagnosed with UC in 2006, though had symptoms since 1999.
-Had mild/moderate symptoms continuously until severe flare in autumn 2010 which required 2-week hospital stay
-Took Asacol, Rowasa, Canasa and Prednisone to manage flares but meds stopped working
-Tried 1 infusion of Remicade but had excruciating joint pain and discontinued
-Had permanent ileostomy surgery 11/8/2010

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 4/4/2011 2:38 PM (GMT -7)   
IF you don't have M9 you can try hydrogen peroxide in the meantime.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 4/4/2011 3:08 PM (GMT -7)   
I hate to tell you...but it's the fish oil devil I was going to mention that it could be the filter but once you said you started with those darn pills...

If you can get the Devrom pills they help a little, but there's something about that fish oil...I didn't have much luck with them and the M-9 drops...just the Devrom pills.
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

villager
Regular Member


Date Joined Aug 2010
Total Posts : 130
   Posted 4/4/2011 3:19 PM (GMT -7)   
Hi - I agree that it is probably the fish oil --- i used to eat a lot of fish prior to my ileo but now because of the resulting odor i dont touch it - even omega 3/6 capsules based on fish oil cause a problem. I wouldnt get the smell except when emptying but its just not worth the hassle so fish is out for me. The smell when the bag is closed may well be coming from the filter . ?? how much fish oil would you be taking - maybe cut down a little - the smell might go with the use of m9 or peroxide & you would still be getting the benefiting.

?? keepus posted on how you get on

cheers
UC since 1990, not a lot of fun
Qualified as ileostomate May 2010, a much happier boy now
panproctocolectomy, abdomino perineal resection, perm ileostomy
my colon may not be, but my heart is in the right place !!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/4/2011 4:59 PM (GMT -7)   
Interesting..... I've been eating a lot of fish for protein in my recovery, and I don't notice a problem with it (since I started using the M9 drops, before that, everything was a problem)
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 4/4/2011 6:58 PM (GMT -7)   
i think the fish oil, because when i used to work at the fish camp, i changed my bag on thursdays, then had fish friday night, brought it home from work, and without fail, every saturday i could smell fish that morning and friday night. It's just cause the smell is so freaking strong i think!
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!

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/4/2011 7:36 PM (GMT -7)   
thanks so much for your replies everyone! i'll have to check the filter as well as not taking the fish oil for a while. lol the fish oil was just a thought, never imagined you'd all support it like that :o fish oil is nasty stuff! i took 3 capsules (big ones) daily. i'm gonna quit them completely for a while, then take them again, see what happens.
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

pelztier86
Regular Member


Date Joined Apr 2009
Total Posts : 401
   Posted 4/4/2011 10:36 PM (GMT -7)   
smelling is something quite common to me. in fact, i have a ugly-smelling output most of time.
In my case, its from bacterial overgrowth secondary to deranged motility. Anyway, the smelling does not come out the appliance, so I only have to endure the smell when changing the appliance.

frostyboy
Regular Member


Date Joined Mar 2011
Total Posts : 272
   Posted 4/5/2011 4:05 AM (GMT -7)   
Hoodya,
hope you get it figured out!  I remember one time I tried fish oil for constipation.  Like I have mentioned before, I have tried all sort of crazy things in the past to help.  It said something like it helps because it has the good type of fat to slide things along.  I thought they were nasty, stinky, and very big pills!  Anyways, good luck!  You have been very supportive to me!!!!!
 

Post Edited (hurtboy) : 4/5/2011 5:21:36 AM (GMT-6)


blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 4/5/2011 5:26 AM (GMT -7)   
Just fyi, a lot of vegetarians take flax oil instead of fish oil, maybe that would smell lest but give some of the same benefits?
48 years old, female.
2004 dx indeterminate colitis. Many drugs, minimal success.
2010-11 Official dx Crohn's colitis. Crazy complications -- cutaneous Crohn's, Erythema Nodosum, marginal keratitis, high fevers. Out of good drug options, tired of scary drugs.
Feb 2011 -- proctocolectomy with permanent ileolostomy; abscess, blood clot. Still healing, still glad for the surgery

andorable
Veteran Member


Date Joined Jun 2005
Total Posts : 981
   Posted 4/5/2011 7:58 AM (GMT -7)   
Hi Hodaya,
I also use the coloplast sensura 2 piece click system and have found the same problems. I use hydrogen peroxide in my pouch and it still smells. Mine is like a disgusting charcoal smell and I contacted coloplast about it and they said they had never had a problem like this before but did suggest I try putting a pin prick in the filter and see how that goes , I will try it with my next change and let you know how that goes cause besides that I do like the product. Oh and the smell goes onto my clothes and on the base plate, I really do believe its coming from the filter, my output isn't overly smelly either since I use the peroxide, so perhaps it is some fault with a bad batch of those particular appliances.
Take care and if you find any solution I would love to hear about it too. Will also do the same
Doreen

2b ColonFree
Veteran Member


Date Joined Nov 2008
Total Posts : 2603
   Posted 4/5/2011 10:01 AM (GMT -7)   
hey Sarah, good to hear from you! glad the smelling is only when you change the appliance.

thanks hurtboy ;) that's exactly the reason why i started taking the fish oil lately, b/c my small intestine is soooo slow, so i thought maybe it lacks the moister the instestines need and fish oil can help with that. i've taken the fish oil for the last 3 weeks or so, but havn't noticed a difference with motility. so only for the last 2 days i started to increase it to 4 pills/day, that's why the stench was starting to get to me even more. it was bad enough with 3 pills/day. i think it may be true the fish oil helps greeze the system, but not with CI it's not. with CI NOTHING can work. but you already know that, don't you..

blueglass, thanks! i'll check out the flax oil. great idea!

hey Doreen, thanks so much. i don't know how to define the smell, just that it stincks to high heaven. the thing is that i've been using this appliance for the last 6 mons at least and never had any odor problems. actually, i do remember sometimes sensing some tiny bit odor, but wasn't certain, cuz it was coming like on waves and not definite, so i thought maybe i'm just psychologically too conscious about the bag etc. so i usually didn't give it much thought.

but with the fish oil it was so obvious that i had no doubts. after i thought abuot it again yest, i realized that the smell started about 3 weeks ago, which is the same time i started taking the fish oil, so that makes a lot of sense. i quit the fish oil yesterday, also put on a new bag and it seems no smell so far, but i'll see if tomorrow it's still ok. i hope it doesn't start to stink again tomorrow :( but i wonder why you have problems? you don't take fish oil? how long have you been using coloplast sensura? will keep you posted.
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
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