Concerns about Grandpa's Colostomy Bag Smell - Need Advice

My grandpa has had a colostomy bag for years now, and I recently moved into his house to help him with upkeep, but to also keep an eye on him as well (he's very independent and he likes to assert his independence, also very hard-headed). He recently came to accept the fact that he is type II diabetic and has been for quite some time, many years. He was in denial up to this point and refused to seek medical attention for many years. By now, his feet/legs are in such bad shape I believe he knows that if he seeks medical attention at this point they will probably amputate both his legs and he doesn't want that to happen, so he is still refusing treatment. He has started taking cinnamon supplements and slightly changed his diet, but it is still very poor. Obviously, I know this will not be enough to reverse or stop the damage caused, however, I'm wondering if the smell that comes from his bag is normal or if I should be worried due to the smell. This is an ungodly smell. I have never smelled anything like it in my life. It doesn't smell like any stool I've ever smelled before, the only way I can describe it is that it smells like death. It smells like his insides are rotting. The smell is very strong and foul and fills the entire house up very fast and lingers for what seems like forever. Now, I have no experience with ostomy bags in any way, so for all I know, this could be normal for someone who has had a colostomy, but I just need to make sure, and if this is not normal, I would definitely like some advice on what to look for that might indicate that there may be a problem. Any and all advice or information is greatly appreciated. Thank you all.

I don't have a medical degree, but just experience and common sense tells me that your grandfather's time is very limited unless he gets immediate medical attention, voluntarily or otherwise.

Yep. My output really doesn't smell that much or at least that bad.

The smell I can't help you with. Though it doesn't sound normal to me. As a T1 diabetic, I would suggest getting him on some alpha lipoic acid. It won't fix nerve damage, nothing will as far as I know, but it will slow it down or stop it. It may also help reduce his pain. One of my doctors recommended it to me and my neuropathy has just been marching in place ever since. No progression whatsoever. Please continue to ask questions. The people here are willing, even anxious to help. Good luck to you. It sounds like you took on quite the responsibility. You should be proud of yourself for that.

Hi there, your grandfather needs professional help, at the very least get a stoma nurse out there quickly for a quick review.

There should be more people like you, be proud of yourself.

Axl

Getting Support in the Ostomy Community with LeeAnne Hayden | Hollister

As a Type 2, it's bad if he isn't seeking treatment. He could get serious infections from that. I've only been T2 for 2 years and every check-up, I get checked to see if I have nerve damage with my feet. And he really needs to be on top of his A1c. Otherwise, it's not only going to be his feet he's losing. As far as the smell, I have an ileostomy and at times it can smell like a really bad baby diaper depending on what I eat, but it's a bit different than a colostomy with how food digests. But if it's constantly smelling that bad, he needs to see a doctor to make sure things are okay before it's too late. Best of luck and I pray for the best for you both!

Hello Lissareyes.

Thank you for sharing your grandpa's and your problem and, like others have said, I am in great admiration for your willingness to try to help him.

From your description, it would seem that your grandpa has established a lifestyle for himself that he is unlikely to want to change very much. Therefore, the problems surrounding his colostomy  are complexly intertwined with his personality and it may be difficult for him to consider even minor changes to his lifestyle/diet etc. 

Sometimes, professionals can help by making suggestions as to what might be amiss and what might be done to ease the situation. However, for others, this type of intervention is a form of 'telling' them what they 'ought' to be doing and invites a negative reaction. The psychological, emotional and social dynamics often include the common dimension that the individual concerned already knows what the problems are, and often have worked out what they 'could' do about them if they wished. Thus, intervention from other parties in the form of trying to get them to 'change' becomes an unwelcome intrusion on their privacy and independence. 

This is where a site like this can sometimes come into its own, where people have been through similar physical, psychological and emotional circumstances; have 'found' their own solutions; and are willing to share them with whoever might benefit. 

One 'problem' is that we are discussing it with 'you' rather than directly with your grandpa. this indicates that the problem maybe  'yours' rather than his. If he does not view this as a 'problem', then it will be much harder for him to move towards doing something about it.

If there is some way that you could encourage him to be asking similar questions himself and engaging in conversation on here or on another site, he might be able to find his own solutions to his own problems, which will help him to maintain his independence and is more likely to lead to positive change. 

My solution to my own problems was that I converted to 'IRRIGATING' the stoma/ colon.   This process makes the 'management' of personal waste so much more convenient, in that it is dealt with regularly, all at once rather than being a constant, relentless emptying of bags. The smell and mess is much the same, but it is contained/managed in space and time, which allows me to live a relatively 'normal' life for the rest of the time. 

I do believe that diet can have an effect upon the diabolical smells and this can be altered by trial and error, of taking advice from those who are knowledgeable about such matters. 

Either way, I do hope that your grandpa can empathise with your situation and, if he cannot change for himself, might be able to modify his situation to ease yours. 

Best wishes

Bill

PS: Sorry if this is not the sort of reply that you were expecting but I have spent many years trying to 'help' various 'sufferers' and their carers, and very often my empathy and sympathy ends up with the concept of supporting the carers as best as I am able.

Also, when there is little or nothing practical I can do, I will write a rhyme to try to capture my feelings . To this end, I will share on of these rhymes with you below: 

WHO CARES FOR THE CARERS. 

Caring is a selfless task

done by one for others.

The sort of task that children ask

of fathers and of mothers.

Caring can be caring ‘for’

of that there is no doubt.

But surely it is so much more 

if carers care ‘about’.

Carers deserve a great respect 

for all the work they do.

It shouldn’t be what we would expect 

of these selfless few.

There’s many reasons people care 

and carers care a lot.

In every season they are there 

so the cared-for’s not forgot.

But who cares for the carers when 

their energy is spent?

How many people are there then 

and how many are absent?

When a carer starts to tire 

desiring a well-earned rest.

Many things will then conspire 

to put them to the test.

A carer’s work will take its toll

and it’s not for everyone.

Who is there to take that roll 

that no one else has done.

What happens to a carer’s need 

to stop just for a while.

Who steps up to do this deed

and go the extra mile?

                      B. Withers 2013

(p80 in: A Rhyming Cookbook 2013)

Hi, thank you so much for your reply. As someone with type 2, I feel you may be able to give me some help in better understanding my grandfather's situation. I don't have a premium membership here, but is there any way I can message you privately and ask a couple of questions? If you're comfortable with that, of course. If so, just let me know, please. I would really appreciate it a lot. Thank you again.

Hi Lisa, kudos to you for looking after your grandfather. I agree with the others who have said that this does not sound normal at all. I think you really need to get your grandfather immediate professional medical attention. There might be a smell issue if your grandfather is not taking the necessary care with managing his ostomy, but the kind of smell you are describing should not be occurring. The diabetes issue is something I don't know much about, except that it's serious and should require medical attention. Wishing you the best of luck.

Terry

Hunny smell can also be what he is eating - foods, spices, sauces, etc. - change mine all the time....when I'm emptying, if I eat fish, the smell is definitely there, same as some pastas, etc. In our cases, we are what we eat....sometimes it can be the bag itself if not changed or cared for often enough...me, I flush mine a few times a day with a squeeze bottle of warm water just to be safe....but when in doubt, medical advice first and foremost.... Grandpa's from the old ways are definitely set in their ways...

I don't have a premium membership either. I can only reply to public posts. If you want, you can just put "RoseBud" as the topic and I'll be more than happy to help any way I can. And if other people have it as well, you can get more feedback. Or you can just reply back to my responses.