How much time do ostomates spend on daily care?

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iMacG5
Jun 13, 2017 11:02 pm

Between emptying, changing, prepping our supplies and attending to other ostomy related stuff, I wonder how much time we spend each day or week. Before our ostomies some of us spent the day in the bathroom and we’ve gotten back a lot of time since then. Maybe some of us are spending more time than we really need to and might learn some shortcuts. Irrigation, butt mucous attention, applying EZ vents and other things take time. Of course reading the papers on the pot took time also.
Just wondering.
Mike

Immarsh
Jun 14, 2017 2:04 am

Hey Mike,

It's an interesting post.

My ostomy caused me little or no concern over the last 50 or so years, not counting the "very olden days" with torture devices that were called "supplies".

So let's say for the last forty.....I've been a "slap it on, and gone" type of gal.

Boy was I spoiled. Like other body parts, my stoma is aging....is deflated (like old boobs) and wants to contract when it spurts, rather than stand out and spurt. That has caused some concern. I have to take more time to prepare....maybe 10 or 15 minutes, instead of 5, and then I have to make sure the wafer is secure, another 15 minutes, of standing or laying down......but definitely not sitting. It really does "cramp" my style. But I think back to the 4 years of UC, before ostomy and the hours spent in the bathroom....the countless accidents, treatments, drugs, and I'm grateful to be here, where I am now, with my soon to be 54-year-old stoma. May we live together in peace..... Best regards to all... Marsha

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Bill
Jun 14, 2017 5:45 am

iHello Mike.

Thanks for another thought provoking post!

In my own case, I weighed up the for's and against's regarding what I was doing, when and how long I was doing it for and decided that by irrigating I could bring all the small time slots of stoma attention into one long period. This way I could sit on the loo for an hour or two and more or less let the process  take care of itself, while I focussed on my writing.

The stoma stuff takes up very little of my thinking time, which allows me to feel productive in other ways. Creative writing may seem like a waste of time to some folks and with some of the 'crap' that I turn out, it can seem like that to me at times. However, the main benefit is that it is, in the main,  a positive distraction from the potentially negative emotions that might well arise if I had to focus my attention on the physical crap rather than the more positive distraction of exercising my mind creatively.

Just a thought

Best wishes

Bill 

iMacG5
Jun 14, 2017 6:55 pm

Hey Marsha, the information you just shared is priceless.  You mention the aging process and I know the dexterity I'm blessed with today won't be there down the road so that will slow me down.  You mention other things for us to "look forward" to that we might not have been aware of.  Congratulations for your perseverance and a wonderful attitude.

Sincere thanks,

Mike

iMacG5
Jun 14, 2017 7:17 pm

Bill, to whomever creative writing seems like a waste of time I offer my empathy.  If all humans shared that philosophy we'd still be living in caves.  The worst of your writings have been enjoyable and often inspirational to me.  The positive distraction to which you allude is something I became aware of after I got my new digestive system.  The more I think about other things, including what I'm writing to you guys, the less emotional attention the "new me" gets.  That's a big reason why I cherish this site and folks like you and Marsha.  I run out of time feeling sorry for myself and, instead, you guys force or at least encourage me to recognize how fortunate I am.

Than ks so much,

Mike.  

PS:  I cut way back on my use of commas.  Hope this doesn't affect my grade too much.  Or     would it affect it?  Does anyone really care?

 

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NotDeadYet
Jun 15, 2017 3:55 am

I dunno, iMac, I miss my old mornings. Spending 10 minutes defecating and reading.

Then the new me, with 8 inches of colon above rectum, had the monthly pleasure of reading a book while passing my monthly mucus blob.

Now I'm on the pot 8 times a day passing... human flesh? Only way I can recognize it as that is from horror movies... Actually, it mostly looks like a large version of the DNA extracted from strawberries. (And any mom of a 10-year-old should be doing that easy, fun experiment that does not require a microscope, just vinegar and a coffee filter, this summer with their kids for sure). Yup, I'm stuck in the land of pooping out the science experiments that I once had children do.

Anyway, now I'm doing radiation therapy to make my unattached 8 inches of colon start acting normal again. If I can have just one clear mucus poo, I'll be happy! Well, I'm actually already pretty happy, but you know what I mean.

So I just read at times when I would have read if I was sitting in the loo...

Bill
Jun 15, 2017 5:23 am

Hello again Mike. 

I was interested in your comment on commas as I only started using them a year or so ago when I began writing in prose. Before that I used to use dashes to signify a pause in the flow of writing and I still think they a lot more useful than commas -  because you can put one - for a short pause --two for a longer pause ---and so on. Also, there are no rules as to where they should be ---so you can put them anywhere you want!

That's the beauty of writing in the poetic form -- you literally don't have any rules to follow!

Best wishes

Bill

iMacG5
Jun 15, 2017 10:47 pm

Well NDY, once again I'm fascinated by your perception of things. I thought I knew a little about the mucus issue but you offered a whole new dimension. I know nothing about the radiation concept but I hope it works for you and definitely would like to know more about it. I continue to wonder why the rectum thinks it needs to manufacture all that mucus. Why does it think about anything? I guess it tries to make up for the deficiencies from upstairs.
Stay pretty happy, at least.
Mike

iMacG5
Jun 15, 2017 10:50 pm

Bill, your idea makes so much more sense than the stupid comma and all its confusing rules. We need to recommend that to Shrunk and White.

Mike

medic361
Jun 22, 2017 6:11 pm

I have most of my large intestine still, so I irrigate. I can go anywhere from 24-48 hours between irrigation sessions, depending on what I eat and drink. I usually get 6 days of use out of my wafers and change my stoma caps daily for hygiene and to prevent odor. Irrigation takes about one hour, and I use that time to read emails and watch the news. I use precut wafers, so that takes minimal time. I would guess that on a weekly basis, I spend 3.5-4 hours dealing with my front butt. So not too bad of a commitment. I am, however, saving a ton on toilet paper! LOL

iMacG5
Jul 03, 2017 12:55 am

I try to prep stuff in advance where possible.  Given that, I affix the EZ vents to 5 pouches and cut and shape 5 Eaken or Hollister seals.  Everything else has to be done when it has to be done. Usually the pouch needs to be MT'd and rinsed out once a day and that takes about 15 minutes.  Mine is a colostomy so I'm able to go a full week between changes.  Then there's the butt mucous which takes about 10 minutes, twice a day.  It averages to about 2 hours a week but I'm using way more TP than Medic361.

Best to all. 

Mrs.A
Jul 08, 2017 8:07 pm

Time is something I'm sure I'm saving on now rather than when I had that tumor blocking my colon, but the pressure and anxiety I lost when getting my colostomy is what I cherish the most. It was extremely stressful when I had to venture outside the house, always feeling like I had to go to the bathroom or I was going to have an accident. At work, I would go to the restroom countless times until I finally made that doctor appointment.

Changing the pouch, rinsing the bag between emptying, prepping my supplies, I can take as long or little as I need. I'm sure I use more TP than before or close to the same amount. I do, however, take out the trash more often and use doggie bags for my used supplies along with the nice blue bags they add with my order.

iMacG5
Jul 09, 2017 9:23 pm

Hey Mrs.A, thanks for sharing.  Lots of folks think an ostomy is the worst thing to happen to a human.  I cetainly had those thoughts.  Reading stuff like you wrote can diminish fears and encourage optimism to the newbies or the going-to-be-bies.  

Mike

Angelicamarie
Aug 01, 2017 10:49 am

G'morning Mike, I do irrigate trying a different way, my stoma wasn't confirming. And I refuse to give up. So because psychologically didn't want to accept it!! I had a ceremony for the first name and renamed my stoma Angelina and it is now starting to conform. U see I love Angelina because she saved my life!! I had a name that was an enemy because in my mind it had to be an enemy that wouldn't conform and go against me!! The mind is most powerful but I'm on track now spend less time doing her, because she's my lifeline and I try to help others!!! Best wishes, Angel

iMacG5
Aug 01, 2017 7:52 pm

Hi Angel.  Great job!  Your understanding of the relationships between our minds and bodies, friends and enemies, etc. could suggest how some kindness might get some not so pleasant folks to conform with the lovelier aspects of life.

Sincerely,

Mike