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kyle89
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February 10, 2020 11:55 am  

Been an ostomate since 5/2018 as a result of severe UC. First procedure yielded an end ileo which I did just fine with, no real issues of which to speak (this site and forum made it so much easier). Had lots of back and forth trying to decide if I wanted to proceed with J-pouch as suggested by my surgeon, but eventually caved and decided to continue. Had surgery 2 of 3 on 11/22/19, which was a disaster (unrelated to this post, however). I now have a loop ileo which has been a bit trickier than my end. The main issue I am having is really strong odor that is seemingly uncontrollable. I use a Hollister New Image 2-pc (I have filtered and filterless bags), and find that typically by the end of the day on which I place a new flange and pouch I can already smell the output (especially under my shirt/jacket and under the sheets at night). This was essentially never an issue with my end ileo. My diet has not changed, nor has any of the supplies I use. I have tried (not all at the same time!) m9, Na'Scent, Devrom, essential oils, hydrogen peroxide, probiotics, and of course switching from filtered to filterless bags. The m9 seems to make the biggest difference, but even still I smell the combination of output and m9 which is not pleasant. For the record, I have not had any skin irritation or leaks which makes this even more challenging to figure out. I have also done the tape border test and have not noticed any odor on my finger afterwards. Any suggestions would be hugely appreciated!


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VeganOstomy
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February 11, 2020 4:54 pm  

Welcome to the forum, Kyle.

Ok, so can you tell whether the smell is coming from the bag, the filter, or the wafer? 

Does your stoma protrude and does the inactive hole point out (vs. Down or under the wafer)? 

 


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kyle89
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February 11, 2020 6:26 pm  

@veganostomy

Thanks so much for the warm welcome! Identifying the source of the smell has been challenging. I have tried running my finger along the tape border of the wafer and it does not smell, and I have not observed any output under the wafer when I change it. I have tried the same thing with the bag and it doesn't seem like that is the issue either; it's especially odd that I have the same issue whether I use a filtered or filterless bag. 

The stoma does indeed protrude, although not as much as my previous one did. Occasionally I will notice it go somewhat flush with the surrounding skin, but that doesn't happen all too often. As for the inactive hole, I am not entirely sure where it is; at least to me it is not visibly obvious. I think it might be under the wafer, but I'd have to ask the surgeon to confirm. Since I did not mention it before, I do not currently use a wafer with any sort of convexity.


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SqueakyandLiza
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February 11, 2020 7:25 pm  

@veganostomy

Eric, I was reading your response here. You mentioned the inactive hole. Is that something that is only on a loop ileostomy?  Would that be the same thing as the mucus fistula. That is what my stoma nurse refers to my second hole as. I know the surgeon put it there. 

My problems are: 1-the second hole is below skin level from the side of the stoma (opposite side as primary opening) and 2-it is not inactive. It gets output coming out of it fairly frequently. And that is the side where I get most of my leaks. 

So, does an end ileostomy not have a second hole?  I think that wouldn’t make my life much easier. 


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LK
 LK
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February 11, 2020 7:52 pm  

Kyle89...welcome to VO! Eric has done a fabulous job here! Thank you again Eric! 

If you don't  mind, in order to  save me writing a bunch of stuff that won't be of use to you,   I'm going to ask you a few questions first.  

Have you tried eliminating veggies that are known to cause odors? Ex: brocolli, cauliflower, asparagus, beans...anything that gave you bad gas before your surgery,  can give you extra stinky output now.  Why?   Because the break down in the  digestion period is not as long after surgery as before, therefore causing a stronger odor and and for lack of  better words, the rotting process is more ripe. 

Are you counting out your M9 drops or giving it an approximate squirt or two? The bottle says 4 to 12 drops. I use 20 in the day and 22 at bedtime. I get 1 month per big bottle, counting out every single drop. 

Have you tried the Adapt, lubricating deoderant from Holister? Or in combo with the M9, I will at times, it's fine. Rub the pouch shides together and spread it thru to the top avoiding a vent if you have one. 

How are you using the hydrogen peroxide and what  strength?

Are you rinseing your  pouch between emptying? Are you on well water or an artisean well? Are you scrubbing the inside pouch sides together between your hands from the outside?

Please let me know when you have time okay. 

Linda


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kyle89
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February 11, 2020 8:12 pm  

@dlkfiretruck

Hi Linda, thank you for the kind welcome and thoughtful response! 

 To answer your first question, I haven’t eaten any vegetables or legumes in quite a while (even before my second surgery) due to issues with excess gas. I miss them quite a lot!

 For the m9 I always count out 20 drops each time I add it to the pouch. Funny you should mention the Adapt lubricating deodorant, I used it frequently after my first surgery since the output was very formed and I had issues with pancaking. While it did help with that, unfortunately I never noticed that it helped with odor. Now the output is so thin that I don’t need any help with it, if you know what I mean!

One thing I have not tried is rinsing the pouch. To answer your other question, I am on a city water supply and not a well. I have to empty it pretty frequently and I can almost never predict when the stoma will be active (it seems like it’s going all the time). I have attempted combining hydrogen peroxide and water 50/50 and pouring that into the bag while I’m still wearing that but it only kind of helps. 

Cheers,
Kyle


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Dona
 Dona
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February 11, 2020 9:00 pm  

Hello Kyle89 and welcome,

I use exactly the same gear you do ( except I use a convex wafer) . I also switched to filterless bags also, as the filters never worked. Since you detect no leakage, I'm at a loss as to where the smell is coming from. I can see it would be worrisome.

I detect no odors unless I have a leak or vent gas thru the Osto EZ vents I use. 

As to where your oder is coming from, I think Liza has made a great point. What is the inactive hole??? Maybe if we knew more about it someone could help you with this problem.

Keep posting, and once again, welcome.


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kyle89
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February 11, 2020 9:28 pm  

@dona

Hi Dona and thanks for the welcome! The inactive stoma lumen is a feature of the loop ileostomy. I would do a terrible job explaining it, so here is a blurb from the NHS website that is a little clearer:

To form a loop ileostomy, a loop of small intestine is pulled out through a cut in your abdomen.

This section of intestine is then opened up and stitched to the skin to form a stoma.

In these cases, the stoma will have 2 openings, although they'll be close together and you may not be able to see both.

One of the openings is connected to the functioning part of your bowel. This is where waste products leave your body after the operation.

The other opening is connected to the "inactive" part of your bowel that leads down to your rectum.

The loop ileostomy is usually temporary and may be reversed during a second operation at a later date.

So the above is fairly accurate except I have no colon or rectum and instead have a J-pouch that will “take the place” of both, but is in the process of healing, therefore requiring diversion of output through a stoma. So the inactive lumen leads to the J-pouch while the active one is what actually outputs into the bag. I hope this all makes sense (and that I am explaining it correctly)! 

Best wishes,
Kyle


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Dona
 Dona
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February 11, 2020 9:35 pm  

Kyle,

Thanks for the explanation. From what I understand, both the lumen and the stoma opening are covered by the wafer and the output goes into the bag. Right? It seems if thats the case, then it wouldn't be the source of the odor. I hope someone here at VO can give you some more useful ideas. Good luck with the healing, and further surgery.

 

Just a thought: If you are in a fairly close relationship with one of our canine friends, can he or she smell anything around the bag?  If a dog can't smell it then nothing can. Its been said ( by Eric maybe,dog owner...) that if your dog seems too interested its time to change.


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kyle89
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February 11, 2020 9:42 pm  

@dona

Dona,

I believe you are exactly correct, and I was thinking the same thing - wondering how that could be the source of the issue. But who knows, stranger things have happened! I have a wonderful black lab pup with a great sniffer and he has yet to show interest in the area around the pouch. Mostly just focused on licking my face. So let’s hope the theory holds true that if he can’t smell it neither can anyone else ;-) 

Thank you for your kind thoughts and well wishes!


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VeganOstomy
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February 11, 2020 10:02 pm  
Posted by: @dona

Just a thought: If you are in a fairly close relationship with one of our canine friends, can he or she smell anything around the bag?

I came here to suggest something similar. It may sound crazy, but sometimes we think there's a smell when there isn't to anyone else. 

Since all of the possible sources of smell seem to be eliminated, I wonder if this is a placebo-like situation.  

Do you have any volunteers who can take a sniff and confirm whether or not there's something going on? Even your stoma nurse or surgeon might be better at helping you out if you'd rather not get family or friends involved. :) 

@squeakyandliza I'll try to give you a visualization of Kyle's description hasn't helped. 

Imagine our intestines being like a garden hose: you have a source of water on one end and an exit hole (your anus, normally) on the other. Unlike an end ileostomy, where this hose would be cut in half and essentially shortened, a loop ileostomy would end up with the hose having slit made in it and folded so you have two holes in the middle: one that water still passes through (the active stoma) and a hole that goes to the exit of the hose (the inactive stoma). 

I don't believe the inactive hole would qualify as a mucus fistula, but it may still produce fluids and mucus that sometimes interferes with the wafer. 

 


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kyle89
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February 11, 2020 10:13 pm  

@veganostomy

I think this is a great suggestion and have sought the olfactory assistance of both my significant other as well as my parents. Two say they can smell something, the third claims to “have a bad sense of smell” which I take to mean they are potentially sparing my feelings. I have yet to ask my stoma nurse to take the smell test, but it is a good idea. My surgeon is in and out so fast I doubt she would take a second to smell the roses.

Also, thank you for taking the time to describe my setup in relatable terms. It has actually helped me imagine how it all comes together much better!

 


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SqueakyandLiza
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February 12, 2020 3:01 am  

Welcome Kyle. It is always nice having new people join this group and start posting. 😀

 

Eric, I wonder if I have misunderstood or someone used different terminology. I definitely only have 1 stoma and I’m almost positive it is a loop ileostomy. There is definitely the main opening toward my right side and another little opening toward my belly button. The majority of activity seems to be the right opening, but I do get some output from the other hole. I wonder if it was meant to be an inactive hole?  Hmm?? 🤷🏻‍♀️


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VeganOstomy
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February 12, 2020 12:01 pm  

@squeakyandliza

This website has some fantastic illustrations and photos showing the difference between the two: http://www.ainscorp.com.au/ileostomy.html

It's entirely possible for the inactive opening to produce mucus, which is maybe why it's been referred to you as a mucus fistula perhaps. 


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SqueakyandLiza
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February 12, 2020 2:59 pm  

@veganostomy

Thanks Eric!! Now I’m even more confused. I definitely only have one stoma. The second opening is just a little hole. You can’t even really find it by looking, but I can see stool coming out of it sometimes when changing  my appliance. I always, in my mind, sort of compared it to a little vent. Like if you make an opening in a can to pour the contents out, it works much better if you have another  little hole to let air in. 

The thing that makes it different from all the examples I’ve seen online both of a mucous fistula and the inactive hole, is that it is definitely stool, and not mucous, coming out of it. 

Just another thing to make me different. AKA a weirdo. Lol. 🤣


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dogtalkerer
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February 17, 2020 1:07 pm  

kyle,   I have no doubt you smell what you do, no need to find a dog, plus you can't ask them exactly what they smell, could be food on your shirt.   plastics are porous and in time,  stink migrates.  sometimes I go 5 days, sometimes only 3 days.

if you can manage, after rinsing with water, quickly remove bag and flush with straight peroxide, then put back on.  try this morning and evening.  you could switch between 2 bags , so the peroxide could stay for 5minutes or so to soak a bit. then go back and forth between the two.

with the loop, you are probably getting more acidic output than with the end ileo.  that might be the reason you are having smell problems, sometimes its just the material as well, a bad batch of weak plastics.


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glenn.giroir
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February 17, 2020 3:40 pm  

I had this problem a while back - could smell my bag under the sheets at night.  I'm not certain, but think it was due to a bad batch of flanges.  I was using Hollister 2 piece, and on one of them, I noticed that the flange, where it hooks to the bag, had a small crack in the plastic.  I've moved on to another box of bags, and haven't noticed any smell since.  


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kyle89
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February 18, 2020 11:22 am  

@dogtalkerer

It's good to know I'm (probably) not crazy! Amazingly enough, I start noticing the smells within the day of changing everything which has to be a record. Previously I could go 7 days, sometimes 8, and not have an issue. Having said that, I will give the peroxide soak a try as I don't think I can not have a bag on for more than a few seconds. Switching back and forth between two seems to make the most sense. I also have been highly suspicious of the sudden issues and it wouldn't surprise me if it was something specific to the loop ileo. Unfortunately I think the intestine below it is now toast since it's full of staples, so might be dealing with the odor for a long time to come. Even if they convert it to a permanent end ileo I think I'd have the same problems.

@glenn-giroir

It's interesting you should say that, I have been using what I think are bags and flanges from the same batches as I was with my end ileo, but did not have issues then. However, no way to know for sure since I recently reorganized and moved all of my supplies. I am going to try a brand new set that's supposed to arrive in the next few days to see if it has the same issues. If it does, I might have a lot of bags and flanges on hand that I can no longer use. I ordered a couple 1-piece samples from Hollister and will probably do the same from Coloplast, even though I don't like their products as much from a comfort perspective. Hopefully something will end up working!


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LLNorth
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February 18, 2020 12:42 pm  

Kyle, my situation sounds similar to yours, and my theory is it’s the bags, a combination of manufacture and deterioration of the plastic. I don’t fault the manufacturer; they put great effort into consistent quality. However,  I experience this occasionally and when I do I get another day’s use by 1) wearing a StomaCloak at night or 2) washing the outside of the  bag, very lightly, with antibacterial soap in the shower.


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kyle89
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February 18, 2020 12:55 pm  

@llholiday

Thanks for the suggestions! I have not heard of the StomaCloak before so I will have to check that out. Also, I had not thought of trying to wash the outside of the bag, but it makes sense if the material is breaking down as could possibly be the case. I actually called Hollister and asked if there was anything else I could do and they suggested trying all of the products I already have, and then insisted it was an issue with how I am applying the flange to my skin despite the fact that I have not had any skin irritation or leaks to date. They also said sometimes loop ileostomies require a convex flange so they're sending me some of those, but I don't think they'll help if it's the bag that's allowing odor through.


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