Struggling with Stoma Care - Needing Motivation

There are times when I am just not in the mood to change my whole system, but I am in my fourth day and I know I must do it before I create skin issues, then I will really be very sorry. This is an instance when I start to regret this surgery. I just don't want to be bothered. Especially after 4 whole days of running around not thinking about my stoma. The way life was before, so happy and glorious. Then I wake up to the fact I do have a stoma that needs attention now.

I fall into a pit and have to waste a day to get out. Does anyone else also lose it after doing so well? Thanks, Arlen

Are you kidding? If I could go 4 days without changing my barrier, I'd be dancin' in the streets!! You're making it sound like it takes hours to change your barrier. My change is quite complicated, but I'm good to go in less than 30 minutes, and that allows for a bit of unexpected output either slowing me down or making me start over. Me thinks you're overthinking it. If changing your barrier is the worst thing you do every couple of days........I want to be you! You're a lot luckier than many on here.........I'd just go with it and enjoy your good fortune!

;O)

I look at stoma maintenance like this.... It's a necessity and the outcome for not doing the maintenance is way worse than just doing it. I'd much rather change my bag than change crappy sheets because I didn't change my bag. Or, I'd rather change my bag and take care of my skin rather than have the burning irritated skin to deal with.

How long since your surgery, and do you have depression or anxiety?

Keep on fighting. It gets easier in time.

I've got a few health problems. When I'm feeling ill and the pain is bad, it's more of a chore to change and I can put changing off for a few days longer than I should. I can change a bag in 1 minute when it needs it (after living with a high output stoma a few years ago, you learn to change bags fast), but no, I never regret my surgery. I've been close to death a few times, so I know how lucky I am to be here. My life's just the same, if not even better than it was before having a stoma.

I just change as part of my shower routine. But, I have a urostomy so it might be different. I have my wafer cut and ready, all my supplies on the bench by the shower. I remove the bag and wafer, clean it up pretty good and hop in the shower. This is always a nice relaxing long shower. I've started with the Head and Shoulders Classic trick I read on here for my skin. (Which fortunately except for an irritation from the very first bag has always been good). I think the shower with no appliance makes me look forward to change days. I am on a 3-day schedule (I do shower on off days, well that's my story) so it's only twice a week. Granted, I've only been it for the 6 weeks I've been home from the hospital.

The thing that worries me about the bag routine is if we go out, or have a party here, and I get shitfaced I still have to get ready for bed. I gotta rotate my pouch, hook up the night bag, get in bed and make sure it's not twisted. I used to just fall in bed. But, I used to get up 4 times to pee so I think I'll accept the bed prep.

My Ostomy Journey: Ryan | Hollister

I change 2 of them and do it in less than 15 to twenty minutes. Or less or more, you need to get on with life. This is all you have. Enjoy.

It was a pain in the ass (LOL) at first but after almost a year, I find the clean and fresh feeling is pretty wonderful. I would change every day just for that feeling, but 10 bags a month makes that a no-go. Rinsing with warm water after every dump helps a lot.

Hi Arlen

You said "This is an instance when I start to regret this surgery." I assume that means you had a choice? I didn't have a choice. My stoma saved my life and I am grateful. But I do understand how you feel. It is another chore added to our day/week. A chore that we would rather not think about. I used to "fall into a pit" when I first had surgery... It was all so overwhelming at times... all this newness to adjust to. Things would never be the same again. I'm ok now (coming up on 3 years)... I'm ok with my 'new normal'. I still get 'down' sometimes but I don't stay there long. You will be just fine. Hugs

Yes, Arlencohen, I do get aggravated and upset sometimes when I have to change my bag (especially after a breakage), but I have told myself many, many times... I can cry about it, take a fit about it, but I still have to change it and clean up! I'd rather change it, clean up, and get on with life than waste time complaining about it!! As far as regretting getting it... never!! I was "tied" to a toilet every day and everywhere I went! I feel free and I am very happy!!

Arlen, this life we have is definitely not easy! But I think about how much worse it could be. I'm grateful to change every other day, otherwise I leak. I also have to keep in the forefront of my thoughts that my other options were far worse. It makes my constant bag changing not so bad.

Hugs

Hugs

Thanks, Bob. I used to change every day until I spoke to the care team at Coloplast. There is no charge; they will help you get a system to work for you for at least 3 days. It takes me about an hour to change because I like to air out my skin and just let it breathe for 30 minutes. This helps to clear up any skin issues. Everyone is different, but I found not all stoma powder is the same. Other ostomates seem to do better with Adept stoma powders, including myself. If I were you, I would definitely try different systems until you get one that works for you for a minimum of 3 days. Manufacturers will send you free samples and follow up. All you need to do is call the suppliers. It's all trial and error. It's worth the effort.

Hello Arlen.

Thank you for posting about your feelings on such matters and I am pleased that you have received lots of useful replies to your post.
Being someone who always believed that their lifespan would be much shorter than it has actually been, I have an acute aversion to ‘wasting’ time. 
There was a period when I was spending a couple of hours every night sorting out my stoma and, after a while, I was beginning to resent having to do that. Fortunately, I thought about it, and decided that if I multi-tasked during that period, the tending of the stoma and what seemed like a waste of time would not be quite so onerous. 
Hence, I began composing rhymes whilst doing this chore, and my attention was diverted away from resentment and on to something which I considered positive and productive. 
We all deal with these occasional negative thoughts in different ways, but positive diversions are often an effective strategy for dealing with wayward thoughts and emotions.
I have found one such rhyme which was probably written at the time when I was getting fed up with my resentment towards the stomas chores.

Best wishes

Bill  

DEALING WITH ’STUFF’.

There are times that all my ‘stuff’
just seems like a load of guff.
Problems that are always there
forcing me to stop and stare.

I focus on the negatives
and veer away from positives.
‘Stuff’ is like a problem-fest
sent to put me to the test.

It comes back time and time again
to twist my mind and tease my brain.
‘Stuff’s ’, like a vortex I have found
it sucks me in and spins me round.

It seems that with this ‘stuff’ of mine
triggers are set at very-fine.
‘Stuff’ winds me up like tightened spring
To be set off by anything.

I know it doesn’t take a lot
for ‘stuff’ to make me lose the plot.
Then I will start to feel some guilt
that in my mind this ‘stuff’ has built.

But now I think I’ve had enough
of all that nasty, toxic ‘stuff’.
I’d like to get my life arranged
so I can get that ‘stuff’ all changed.

I want to get so I can live
with ‘stuff’ that is more positive.
Out with the old, in with the new
I’ll change the things I think and do.

I’ll try to be more introspect
and get myself some self-respect.
If I can only stay this way
more of my ‘stuff’ will be okay.

                                 B. Withers 2012
(In: ‘My Ostomy World’:Book1 2012)

 

Hi A,

I hear you, but I've been at this now for almost ten years. I've tried most, but not all, ostomy products and dealt with all the suppliers. I've expanded my change interval from daily to up to 4 days or more with a lot of trial and error and tips from folks on here. I usually change on day 3 because the skin under my barrier isn't happy if I let it go longer than that, rather than springing a leak.......and the best way to deal with skin irritation problems is to not let them happen in the first place.

But for a lot of folks on here, getting a barrier to last more than a day or two would be a dream come true. In my case, I only really have one time each day that I can change my barrier, due to my high output. So every morning, I have to decide if it's worth saving 20-30 minutes to risk getting another day out of my barrier. 20 minutes of that is the application of a 10-minute aluminum acetate and 10-minute vinegar soaks to keep my skin happy. In my case, if I spring a leak before the next morning, it's basically tape her up and wait until then to change. I exaggerate a bit, as I have successfully changed my barrier during the day, but the amount of supplies I have to burn through to do it isn't logistically supportable......so it's usually just wait and sleep over a bucket, despite the skin irritation that causes.

The point of my reply wasn't to denigrate you or criticize your decision, it was just to point out that you may have it a bit better than you know. For everyone on here that can go 6 or 7 days without changing their barrier, and there are many who can barely make it a day.......and some who can't even do that. People tend to generalize about ostomates based on their situation. You can have an ostomy for a variety of reasons, which means vast differences in output type and frequency, as well as have a whole host of skin problems to complicate wear time.

So you're mid-pack at 4 days, which is a pretty good place to be. I'm only suggesting you enjoy the freedom that affords you, as many others are not so lucky. As the saying goes..........there's always someone worse off than you.........until there isn't. I'm glad to hear you can go 4 days..........but there's a lot of ostomates who would love to be in your shoes.

;O)

Hi Arlen,

I am about 3 months post-op and still deal with getting anxious when I have to change my bag. It does take time and I know I still need more to be 100% confident. I am dealing with output sneaking onto skin below my stoma so I tend to get overwhelmed. But it has gotten better as time goes on and I'm sure it will continue to. Good luck.

Yup..........it gets better, and easier, as time goes on. Before you know it, you'll be talking to it........and there's even a few on here that gave theirs a name! It gets to be part of the family pretty quickly.........but definitely a bit overwhelming......and damn ugly......at the beginning!

;O)

Hi, thanks for your input, but I feel you are not getting the proper guidance. Your system should work for you at least 3 days, maybe 4. If you are not reaching this goal, it pays to experiment with trial and error and try a different system. Call Hollister and Coloplast and talk to a care team member. They can assess you over the phone or Zoom and see what product will work for you. It takes me about an hour to change, which includes 1/2 hour for drying time. I used to change every day, until my daughter who is a doctor looked into this and discovered the hospital sends you home with the systems that are sold to them from the manufacturer but not the best system, the cheapest system that they can make a deal on. It was life-changing for me when I went from 1 day to 3/4 days. It's up to you to take the initiative and talk to a care team who could assess what you have and make recommendations. Good luck

I must be lucky. I change every Monday and Friday, and after a shower, I can have the old bag Hollister 2 piece off and the new one back on in 5 minutes. I only ever clean around the stoma with warm water and nothing else, then dry it and fit my pre-cut washer by Welland then my pre-cut bag by Hollister and pop on my bag. All done and feeling good.

I change my ileostomy bag every other day but still have a sore skin area around my stoma. I feel like I’ve tried everything to stop the burning. I keep going back to the NYU hospital ostomy team for new products but still unsuccessful. 
However, my life with pain was so bad before the ileostomy I wouldn’t reverse again. 
So, some of us have to accept our situation and remind ourselves we still have it better than most and there was a solution to keep us going. It’s not elegant but works most of the time.