Growing old with your stoma

[DMac]

Hi

So I do appreciate this will only be applicable to a few of us here (those of us with permanent stomas) but I would like to hear from anyone who has a stoma, if they ever think about how their stoma will impact upon their life, when they're a lot older.

As a nurse, I come across a number of elderly patients with stomas, who for a whole host of reasons, are not able to care for themselves and consequently their stomas. And so they're completely reliant upon care givers to help manage their stoma needs. I turn forty in January and I do, on occasion, find myself contemplating my later life with a stoma. I guess being a nurse makes me more aware of the care and assistance I would hope to receive.

So, I'm wondering how you guys feel about your future with a stoma. Do you not really give it much thought, and are you more focused on today? Do you even think about how your life will play out, in the later years with a stoma? Are you concerned about it? How do you feel?

Thanks : )

 

[GutlessWonder86]

greetings DMac,

I'm a crohnie who got her ileostomy at the age of 17. It was life or death so it saved my life.

I've been very active in the ostomy support group where I live and I see some elderly patients who have issues with caring for their ostomies too. Some are lucky to have a spouse or family member help change and others are not so lucky then they are in a nursing home where the care sucks.

I did a nursing home visitation once to a gentleman who was with it but just hated his stoma because the RNS really screwed him over in caring for the appliance. I even showed the RNS what was needed as he was leaking big time and they were like, oh we have the supplies don't worry we'll get it for him. Then they call me at home, could you bring some supplies for him as we don't carry them. WTHELL? you are a medical facility right?

So I talked to his daughter as she was so upset. Then I told her I'd be able to show her on me with my clothes on what to do as legally I couldn't touch her dad due toe HIPPA laws. Then I sat down and had a nice long talk with how to deal with things and for him to express his emotions. I then gave him some stuff I had and told him to give me a call anytime day or night because that is what I do for patients.

The next day I get a call from his daughter and she was so happy that her dad finally took care of his ostomy himself because of my visit and he was no longer depressed!! That made my day. I even got a beautiful thank you card from her.

I think about getting older myself as I will NOT let anybody but my GI and GI surgeon touch "BOB" because I've had many incompitant aides who were "supposedly" trained on ostomy care (like for 3 weeks--sorry RNS are well versed not some joe from the parking lot) so the RNS wouldn't have to do it. BS!!! They don't even know how to empty a bag and when this twit tried to empty I was like, YOU EMPTY FROM THE BOTTOM!! That is why there is a clip on it. Don't remove it from my abdomen or you will have crap to clean up.

Then I was like, I will do it with 1 hand (IV in the other hand) go away. So I am overly protective of who touches me. Dear hubby will have to do it if I am ever not able.

heck, when I had a stroke and my right side was paralyzed, I had to change the entire thing with my left hand (I'm right handed) and had no help in the ICU. I amazed myself that i was even able to get the bag on with it falling off. I even used my toes to pick up stuff I dropped.

Oh yeah, RNS RULE!!! My rule of thumb when it comes for ostomy care, ALWAYS ASK FOR A REAL NURSE. (RN).

 

[KazT17]

Hi DMac,

I don't think it is worth a worrying about. It is like someone without a stoma wondering how they will manage to go to the bathroom when they get old. I have been hospitalised several times and watched as elderly patients struggle with incontinence and losing their dignity in a hospital bed!

I think it will be less embarassing to have help with a stoma than help the other way. (Well you know what I mean lol)

Gutless, you are an angel doing that for the elderly gentleman. Kindness costs nothing but, as you have proved, can mean so much.

Kaz xxx

 

[DMac]

Thanks GutlessWonder86 (fantastic name by the way)

You make some great points. I am especially amazed at the fact you were able to change your stoma with one hand, and not even your good hand. I have often wondered if I would be able to change my bag if I lost use of my right hand. I know I would struggle, so kudos to you for being able to adapt.

You're right about elderly patients being fortunate to have loved ones who can seek help and then subsequently assist with the changing of the appliance. If you don't have that help, or worst still, you're in a residential setting where due care is not a priority, it can be incredibly upsetting for both patient and family. I have come across only a couple of horror stories re elderly patients and their stomas, so I am confident that the NHS does deliver a good level of care for elderly ostomates.

It is something I do think about. Thanks for your post, very insightful

 

[DMac]

[KazT17]
I have been hospitalised several times and watched as elderly patients struggle with incontinence and losing their dignity in a hospital bed!

Very true.

Don't get me wrong, I'm not preoccupied with thinking about it. I just pondered as to how I will adapt and be treated. You're absolutely right though, what will be, will be and for many of us just dealing with it in the here and now is challenging enough.

Thanks for your input, much appreciated

 

[Misty-Eyed]

I've always thought the same as Kat. My grandad was recently in hospital and wasn't allowed to walk to the hospital so had to have a bed pan. I told him that he was probably jealous of my bag, which he was!

Are a lot of elderly patients that you see newish to having a stoma?

 

[glum chump]

I have MS and my hands are often quite shaky. This has meant that when I'm not having a good day, it takes me quite a few tries to get my flange over my stoma. Getting the bag on is a bit easier since it's larger proportioned. I don't put the barrier ring around my stoma; instead, I put it around the flange before taking my old appliance off and have it prepped and ready to go before I take the old stuff off. When I lose feeling in my hands, things are much harder, but what it requires most of all is patience and a lot of little gauze squares to help with the clean up (I lay in bed and put my appliance on---I can't do it standing up!).

What I find most difficult is cutting my flange to fit my somewhat oval-shaped stoma. My partner cuts up 10 at a time for me based on the ET nurse's template, which is so helpful.

I think if I had got my stoma when I was frail, much older or when my MS was particularly bad, working out the appliance would be far more of a challenge. Since I've learned how to do it while my body is 'stronger,' I can figure out ways to adapt when my body isn't well.

Kismet

 

[DMac]

[glum chump]I have MS and my hands are often quite shaky. This has meant that when I'm not having a good day, it takes me quite a few tries to get my flange over my stoma. Getting the bag on is a bit easier since it's larger proportioned. I don't put the barrier ring around my stoma; instead, I put it around the flange before taking my old appliance off and have it prepped and ready to go before I take the old stuff off. When I lose feeling in my hands, things are much harder, but what it requires most of all is patience and a lot of little gauze squares to help with the clean up (I lay in bed and put my appliance on---I can't do it standing up!).

What I find most difficult is cutting my flange to fit my somewhat oval-shaped stoma. My partner cuts up 10 at a time for me based on the ET nurse's template, which is so helpful.

I think if I had got my stoma when I was frail, much older or when my MS was particularly bad, working out the appliance would be far more of a challenge. Since I've learned how to do it while my body is 'stronger,' I can figure out ways to adapt when my body isn't well.

Kismet

Thanks for responding

I too prep my bag prior to taking off the used one. It makes life so much easier for me to do it that way. It has become a routine, that I will always use. Again, I genuinely admire your determination to continue to change the bag yourself, given your MS.

Thinking about it, I have come across many elderly patients, in sound mind, who have handled their new stoma with such a degree of ease. They have seemed to take the change in their stride. I appreciate that is not always the case, but in my experience, many have handled it remarkably well.

On the other hand, you will come across patients who are relatively young, but cannot bring themselves to even empty the bag. We all learn to cope differently and I have nothing but the upmost respect for those who continue to overcome, especially when faced with other health issues. Or even people who have issues relating to their stomas like hernias, fistulas etc...

I wish you all the best for the future. Appreciate your input : )

 

[RFarmer]

Oh god. I can't even contemplate allowing someone to take care of me like that.

I'm going to be like the japanese man who lives naked on his island, eating rice cakes until he dies.

 

[Terriernut]

I saw alot of elderly patients while in hospital with stomas. For the most part, they thought the bag was great! Only a few were unable to take care of themselves. I do often wonder about them and how they get on at home. For those of us with crohns, it's a possiblility that we have to think about. Mine may be reversible this time. But the next time may be permanent. I would hope that I have a good carer, because I've no family.

 

[Susan2]

I'm 70 next year and, although I have no problems with it at the moment, I do sometimes worry how I am going to cope with my ostomy bag as I get older. Even worse is the concern about cleaning up if I have an "accident". I live on my own and have no family near and, if I have an "accident", it needs to be dealt with immediately.

I try not to let these issues prey on my mind but, in the dark times, it's sometimes difficult not to think about them.

Still, I'm off to Mauritius and Botswana in August - so the thing is to live life in the moment and appreciate what I have now.

 

[DMac]

[Susan2]
Still, I'm off to Mauritius and Botswana in August - so the thing is to live life in the moment and appreciate what I have now.

Absolutely. Thanks for your input and have a wonderful time

 

[Hayleymariex]

My boyfriend may be fitted with a stoma, and he's 17. He's still in hospital at the minute and so he's asked me to get answers on whether or not he'll be able to have children in future, and how stoma's affect peoples sex lives? Obviously at 17 this is still quite a big deal, and he was nervous to ask his doctor because of his mother being present, but he does understand that he won't be able to do anything like that for quite some time. Thank you in advance!

 

[Terriernut]

I am sorry to hear your boyfriend is so ill ! Having a stoma will not affect his ability to have children, sex, or lead a very full and rewarding life whatsoever. So you can tell him as far as that goes, he should be more than fine!

If you have a chance to browse through the stoma subforum, you will see we manage for the most part to have very full and rewarding lives. We have marathon runners, sky divers, etc!