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Ostomy: Adapting to life after colostomy, ileostomy or urostomy

Posted by Colleen Young, Connect Director @colleenyoung, Sep 20, 2017

It takes time to become comfortable with an ostomy — a surgically created opening in your abdomen that allows waste or urine to leave your body.

Many questions may run through your mind as you practice good ostomy care and live your life. It can help to talk to others who have been there. Perhaps you'd like to ask others questions like: What can I eat? What about leaks? Can I go back to work after colostomy? Can I ride a bike with an ileostomy? Will everyone figure out I've had urostomy surgery just by looking at me? What about intimacy?

Welcome ostomates. Let's talk frankly about living with an ostomy. Why not start by introducing yourself? What type of ostomy do you have? How's it going?

Interested in more discussions like this? Go to the Ostomy Support Group.

engelee | @engelee | Nov 27, 2021

Adapt——recommended by ost run’s at Mayo. Made by hollister

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kenc | @kenc | Nov 28, 2021
In reply to @miriam57 "Hi Ken, I am 5 weeks out. I did try the lubricant, but didn’t matter to..." + (show)
@miriam57

Hi Ken, I am 5 weeks out. I did try the lubricant, but didn’t matter to me, my poo is still more smooth still. Odor, I have read about the bags with a filter. Otherwise, generally, I don’t have smell unless I burp it.

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I use the bags w/ filters. They help to eliminate some of the gas build up, but then the side effect is that the gas escape at not always the best time. It is really uncontrollable farting.

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katydid77 | @katydid77 | Nov 28, 2021
In reply to @colleenyoung "Good question, Ken. I wonder if @duckduck2020 @tucsonguy @miriam57 @dideon @katydid77 @pjebp @engelee may have tips..." + (show)
@colleenyoung

Good question, Ken. I wonder if @duckduck2020 @tucsonguy @miriam57 @dideon @katydid77 @pjebp @engelee may have tips about how to reduce odor and lubricate the pouch.

Ken, what are you using now to help with odor and lubrication?

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I don’t believe I could be much help on this one. My husband has a urostomy and we have not had problems with odor with his pouch. We do use Lysol spray around the bedroom due to the night bag. Wish I could be more help.

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05mick | @05mick | Nov 30, 2021

I m74and have a colostomy 39 years ago never had any issues with it. I was lucky that I didn't have cancer. I farm, drove truck and work in a grain elevator. I've had a normal life with it

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Dec 1, 2021
In reply to @05mick "I m74and have a colostomy 39 years ago never had any issues with it. I was..." + (show)
@05mick

I m74and have a colostomy 39 years ago never had any issues with it. I was lucky that I didn't have cancer. I farm, drove truck and work in a grain elevator. I've had a normal life with it

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Welcome, Mick. 39 years, wow. What has changed over the decades with colostomy pouches/devices? What improvements have been most grateful for?

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05mick | @05mick | Dec 2, 2021

I use converted wafers and pouches. The biggest change was when they went to predict for the stone Other wise there hasn't been any changes. At first I had to watch what I ate but through the years I can eat most food. All I can say is I am lucky not to have any problems. Thanks for letting me share.

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smeegle | @smeegle | Dec 4, 2021
In reply to @jimmy2248 "How do I tell if I have urinary tract infection if I have an urostomy?" + (show)
@jimmy2248

How do I tell if I have urinary tract infection if I have an urostomy?

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I have gotten several antibiotic resistant UTI's and a few regular UTI's since getting my Urostmies in May 2020. I don't get any of the typical symptoms because I had a cystectomy. I never knew I had one unit it reached my kidneys making me really, really sick ending up hospitalized. I am getting better at noticing even the slightest changes in my urine such as smell, foamy, etc. I use OTC (AZO) urinalysis sticks and/or drop by my Uro's office to drop off a be sample (so they can also run a culture). Getting a clean catch when sporting bilateral urostmies is a challenge as well. Getting a sample from a bag is simply not accurate in my mind. You just need to be very in tune with your body. It has taken me a while but I'm getting better at it.

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catelynn | @catelynn | Feb 25, 2022
In reply to @rwfliess "I see that this group isn't very active, currently. I had my ileostomy at Mayo in..." + (show)
@rwfliess

I see that this group isn't very active, currently. I had my ileostomy at Mayo in January 2013. I am very happy with it. I haven't read all the posts above yet, but maybe they'll be something new for me to learn or contribute. Fingers crossed this thread becomes more active... I will definitely participate. I'd really like to help people not be scared.

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Hi I'm Catelynn I also had an ileostomy and am seeking support in coping with issues re: same

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1 reply
catelynn | @catelynn | Feb 25, 2022

I am new to Mayo clinic support group

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Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 25, 2022
In reply to @catelynn "Hi I'm Catelynn I also had an ileostomy and am seeking support in coping with issues..." + (show)
@catelynn

Hi I'm Catelynn I also had an ileostomy and am seeking support in coping with issues re: same

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Hi Catelynn, welcome. Tell us a bit more about yourself. What led to your needing an ileostomy? What challenges are you coping with?

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