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08-11-2011, 04:47 AM   #1
lotte26
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Stinky bag!

Hey guys! Sorry it's been a while since I last posted!
I was just wondering if any of you have had problems with smell around your bag? I use a convex hollister bag I was on 2 piece but now a 1 piece drainable. Then I started wearing a belt, as I was leaking a few times. I have recently started to notice it has been smelling quite bad around the bag, I can't think what is making it smell so bad as before the bags were fine. I wonder if there is a problem with the filters or something... So tonight I put a plaster over it to see if that would stop the smell... Nope still stinky? It's so gross as i an only use 2 bags a WEEK ! (I know this majorly sucks... But the govt are so stingey) so I can't change it every time I stink! I feel so discusting... Anyway... Does anyone have any ideas why it might be suddenly starting to smell bad? Shit... I just had a revelation ... I started taking the pill (brevinor) like a day or so before I started to notice the stink... Do you think this has anything to do with it? I don't see how that would leech thru tho.. What the heck?!
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-Charlotte


Crohn's disease since 2002, with multiple fistulae

25 May '11 : colostomy formed, 70cm bowel removed + 50cm ileum removed.

16 October 2015 - open parastomal hernia surgery to be performed

Past Failed Meds: Pentasa, azathioprine, methotrexate, Humira.

Current Meds: Humira, azathioprine, fluoxetine, Brevinor, Fish oil, melatonin
08-11-2011, 08:07 AM   #2
poolside
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First off: Surely the foods I consumed had an immediate impact on the "stink factor" lol. As for the pill, I was not on it at that time so I can't chime in.

Secondly: I had major problems with being aware of my odour and great anxiety over it. The thing that really helped me was what some fine people on this forum suggested, use tegaderm to seal the edges around your flange to your skin. It worked immediately. The tiniest wrinkle lets odour escape in a big way.
I got a perscription for it from my doctor so my insurance would cover the cost, but a kindly stoma nurse may also take pity on you and give you some to use as well.
Giver a shot, see if it works.
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Poolside

Making Crohn's sexy since 1995

Remi: 6 years, the love affair is over now :-(
Hysterectomy
Ovarian cancer : treated

Resection/Colostomy 2011
Cancer recurrence

Colostomy Reversal 2011
08-11-2011, 11:39 AM   #3
Terriernut
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Charlotte, I know the government are being stingy with you, but have you gotten the suppliers to send you samples of other products?? Just in my own personal experience, the hollister bags were a bit flimsy and the filters didnt work so good for me.

Convatec
Dansac
Coloplast

Have you tried alot of other products? I'm not sure a one piece is ideal if you have stinky bags. Have you tried the mouthwash? Do you you use the wet toilet paper wipes to clean the opening after you empty? If you do stay with the once piece system, I had good luck with the Dansac drainable. It doesnt have a filter, however, there are products you can put in the bad to reduce gas and smell.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
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08-11-2011, 03:16 PM   #4
Gav
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I agree with Terriernut here. I'd try a few samples of other bags if you can to see if you get the same thing. Eliminate things one by one starting with the bag.

Hope something helps quick and your confidence can then return.
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UC diagnosed 2003. Sub total Colectomy resulting in ileostomy July 2007. Proctectomy February 2008. Late 2008...finally back in business!
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08-11-2011, 03:20 PM   #5
Terriernut
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First off: Surely the foods I consumed had an immediate impact on the "stink factor" lol. As for the pill, I was not on it at that time so I can't chime in.

Secondly: I had major problems with being aware of my odour and great anxiety over it. The thing that really helped me was what some fine people on this forum suggested, use tegaderm to seal the edges around your flange to your skin. It worked immediately. The tiniest wrinkle lets odour escape in a big way.
I got a perscription for it from my doctor so my insurance would cover the cost, but a kindly stoma nurse may also take pity on you and give you some to use as well.
Giver a shot, see if it works.
This tape sounds wonderful, and I asked Alphamed my suppliers about it, but they didnt have it. They are going to send me some samples of other stuff to see if it works. But yeah, if I smell, it's a wrinkle in my appliance. With my HONKING hernia, it's a given I have wrinkles. Never mind my neck waddles peoples! No jokes about us old dears!!!
08-11-2011, 09:05 PM   #6
CDDad
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My guess is there is a leak under your wafer. Sometimes when my wafer is starting to get old, there will be some leakage under the wafer and when this hits the cloth of my Hollsiter wafer, it can start to smell.

When you change your wafer, do you see any output under there? There should be none in a perfect world.
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Crohns since 1989
3 Surgeries - Hemicolectomy '08, Sm Bowel Resection '09, Proctocolectomy '10. Lets hope I'm done now!
On Protonix and Humira.
08-12-2011, 08:01 AM   #7
Jeff D.
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Have you cleaned your skin off lately? I noticed I used to smell occasionally and then I would clean off my skin under my skin during my next change and voila no more smell. I also use a blow dryer to dry off the bag completely after my showers and that has also helped. Good luck
08-13-2011, 07:12 AM   #8
lotte26
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Hey guys. I have tried pretty much everything (except the tegaderm which sounds like a good one!). Yeah I am not the biggest fan of hollister they are uglier and not as good quality as the others but the glue seems to work better on me. I had two major accidents with coloplast so not going there again, and dansac hurts my skin! Those are the only ones I am allowed to use... As the other brands aren't on the approved list or something lol.

Anyway I went off the pill again to see if that was it? and two days later and I have no smell anymore. Plus I was still on the same bags... I am guessing the pill just makes your poo so potent it slips thru plastic!? Lol.

I have also been hvaing no leaks recently under my wafer, so that def wasn't it. Plus I have been washing the skin in the shower every second time I change my bag .

Anyway thanks heaps you guys for the advice and everything! Your awesome
08-13-2011, 09:30 AM   #9
Jeff D.
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I'm glad you figured out what worked!
08-13-2011, 11:55 AM   #10
Terriernut
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Yeah!!! (erm...does that mean no naughties now?)
08-15-2011, 05:13 AM   #11
kekemonster101
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They also have this liquid you can put inside your bag that is supposed to control odor. Any odor leakage might smell a little better too.
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Diagnosed Crohn's 2001
7 Compression Fractures in spine due to long-term steroids
Adrenal Insufficiency
Extreme malabsorption
Previous ileostomy - currently have colostomy
PEG Tube
Several surgeries incl. Fistulas, Abscesses, Resection
2 Deep Vein Thrombosis
Completely bedbound as of 2010

Currently on:
Tysabri (first dose 6/2011)
Hydrocortisone
Probiotics Align+Acidophilus
Iron/Multivitamin/Zinc/Calcium/Vitamin D
Oxycodone
Testosterone
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08-21-2011, 04:45 AM   #12
lotte26
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Poops! So I thought that was the end of it. It's been smelly a bit again. Not as bad but still the weird sickly smell... I have tried that nodor stuff but that doesn't do much. Anyway I am wondering if the reason it's starting to smell is because I've been starting to feel sick again (not even 3 months post op! Let's hope it's just a bug or something...). Do your bags smell worse when your in a flare? Not that you should smell them from the outside anyway...

Xx
08-21-2011, 11:57 AM   #13
Terriernut
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Oh Charlotte, I sure do hope you ARENT flaring again so soon! I also hope you can try some new products that may suit you better! I did notice my poo smelled worse during a flare. But I'm currently having one as we speak, and so far only blood and the big D, but no worse smell. (except when I eat mexican food, but hey!) Dansac has bags that dont have filters, and maybe you should try that? I noticed they really stuck on me as well, and I never had a smell, even after a couple/few days with the same bag. Could you try them?

What maintenance meds do they have you on now if I may ask?
08-21-2011, 06:58 PM   #14
lotte26
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Hey. I'm on azathioprine and LDN been on them for a month. oh that sucks your in a flare too I've had no blood tho which is a good sign. I've also had no firm/normal poop since the op like they said I would as I have a colostomy. It's just been runny like normal. I should ask to try more bags but my stoma nurses are already sick of me! Plus they just ordered me 3 months of hollister bags so that's fun.... I may just email convatec myself and see if they can send a sample. The dansac ones i tried hurt my skin. Do you think sticking something over the filter in the mean time would help?
11-02-2011, 09:42 PM   #15
CrohnsGA
 
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Location: Georgia
Poops! So I thought that was the end of it. It's been smelly a bit again. Not as bad but still the weird sickly smell... I have tried that nodor stuff but that doesn't do much. Anyway I am wondering if the reason it's starting to smell is because I've been starting to feel sick again (not even 3 months post op! Let's hope it's just a bug or something...). Do your bags smell worse when your in a flare? Not that you should smell them from the outside anyway...

Xx


Sorry you are having such problems with odor. Have you tried "OstoFresh?" It works GREAT for me. Also, Adapt lubricator and order neutralizer works for me too. Hope this helps.
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CrohnsGA (Gwen)

Diagnosed: 1989 w/Crohn's Disease @ age of 27
Married with 2 children
Current Meds: Remicade, 6MP, Flagyl, Vit B12 injections,
Phenergan (prn)

Numerous fissurectomies, fistulae, abcesses drained ......
anal stricture.
Loop Ileostomy placed: Aug 19, 2011
11-03-2011, 05:22 PM   #16
hopeful
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I had the same issue with Hollister - after one day, there was odor - when I rubbed my finger on the flange and smelled it - it came from there.

Since switching to Convatec moldable and also adding in the Eakin ring, i have not experienced any odor. I am VERY senstitive to odors and was miserable with the Hollister.

Hollister is nicer aesthetically, but I prefer to be and feel clean.
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