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Colostomy bag operation

Woodytele
Posts: 163
Joined: Apr 2017

i am possibly facing surgery to get a colostomy bag. Can some of you give insight on living with "the bag".  I obviously don't want it, but I need to continue my chemo, and want to survive as long as i can. 

 

Thanks all. 

JanJan63's picture
JanJan63
Posts: 2482
Joined: Sep 2014

I wish I could help but I have an illeostomy bag and I don't know the difference. For what it's worth, I have no problem living with my bag. I'm glad to have it and never worry about where a bathroom is because I never get the diarrhea that used to be such a burden on my life. I hope if you do get one it is something you're okay with, some people have a hard time accepting it.

Jan 

betula's picture
betula
Posts: 86
Joined: Mar 2017

Welcome,

My husband is 47 and is new to the colostomy world.  While it is not ideal, it is something he is adjusting too.  He has continued to be active doing the things he likes when he feels good (still going through chemo) so it has not slowed him down.  He has come so far with his adjustment to it.  Right after surgery when the nurses would come in to check out his stoma he would look away...could not bring himself to look at it.  It also helps to have a good sense of humor about it. 

Getting information about the different ostomy products was very helpful to us.  The best thing was that he had a certified ostomy home health nurse after surgery and she was awesome.  The ones in the hosptial were good too but the home health nurse just had more time to help with training, give info about different bag options.  My husband is using closed end pouch that is just taken off and then puts on a new one.  He started out with the ones that are open ended and had to be emptied in to the toliet.  They were bulkier and the process of emptying grossed him out.  He also had to get down on one knee in front of the toliet to empty it.  Not very convienent.  Down sides for him with having a bag is still ordor when changing it and gas noises.  You cannot control when they happen.  The odor is only when when changing it.  He hopes to be able to move to irrigating his stoma which is something you should research too. 

Here is a link to the national ostomy site that also has a discussion board which I found very helpful: www.ostomy.org.  Another good site is: https://colonclub.com/  You can also see reviews of bags and other ostomy information on youtube. 

Best of luck

 

 

 

Kazenmax's picture
Kazenmax
Posts: 447
Joined: Feb 2016

Hi,

Well I would not say I'm an expert but I've had my colostomy for a little over a year now and I've learned a few things.

1. Get as many samples online as you can. I've tried 4 different systems and I've found the coloplast mio sensura to be the best for me. It has a flexible wafer and the bag attaches via sticky glue. The result is the system is soft and very comfortable. I also tried the drainable and since I have a lot of colon left, the ouput is fairly solid so the closed bag system works better for me. Very convenient to just throw the bag away and get a new one rather than try to drain.

2. Get some essential oils. I use lavender. Whenever I change to a new bag, I put a drop of oil right on the outisde of the new bag. It keeps it scented and controls the odor a little. You can use spearmint, peppermint, anything.

3. The gas noises get a little more under control the longer you have a colostomy. That's because you learn what you should eat and what you should avoid. So far I've learned that broccoli is not too too bad but forget cauliflower. That makes my bag gas up! I go outside to "burp" the bag when it fills up but the sensura filter seems to work the best for me.

4. My home nurse was the best. She made me realize that it was just me... my body, my stuff. You don't worry about how other people go to the toilet, most don't worry about you. AND it's your stuff. Not like you have to clean up after anyone else. 

5. At first I had some trouble with the bag leaking and "pancaking" at the top. I cut the hole in my wafer myself (the wafer attaches to your body, the bag attaches to the wafer). The more I used the bags, the more I realized that the secret is getting the hole in the wafer the right size. I wanted to keep the wafer right up against my stoma and as a result "stuff" would accumulate underneath the edges. I found that if I cut the hole so that the stoma is not right against the wafer, the system works better.

Well anyway... I'm sure this is more information than anyone would want about colostomy systems but I remember when I was waiting for surgery and wondering how I would ever get used to it. Believe me... a I've said before... I hate that I have to have this bag. AND I'm still learning what I can eat and what I should not but all in all, it's better than having cancer. I'm still here and I plan on being here as long as I can be.

Good luck.

k

Tunadog's picture
Tunadog
Posts: 235
Joined: Mar 2017

I've had mine since 12/30/2015 and do not have any issues. I use the SenSura Mio and cut my own hole. I use about 2 a week.

It was pretty easy to get used to (no choice)

vtspa6
Posts: 172
Joined: Aug 2015

I would say also try as many samples as you can.  One thing I didn't like is you have to have a prescription for everything.  Keep in mind your 'hole' should get a little smaller over time so you can change the size of the appliance later.  I do all the removing, cleaning and reapplying for my husband and after 2 years have it down pat.  Just part of our routine along with the chemo!

lp1964's picture
lp1964
Posts: 1240
Joined: Jun 2013

Initially just let the nurse take care of you. Later you can fine tune things on your own. 

For preliminary info you can go to UOAA.org

I'm here every day and you are welcome to email me, I'll get back to you asap.

It's annoying, but not the end of the world. I can honestly tell you that I live a full live with colostomy. 

All the best.

Laz

Woodytele
Posts: 163
Joined: Apr 2017

Thank you all for the help, it's appreciated. 

Annabelle41415's picture
Annabelle41415
Posts: 6692
Joined: Feb 2009

Although an ostomy can seem like a deadly friend it can save your life.  If you need one then your doctor determines that this is the best route for you, but you can also ask for a second opinion.  Mine was an ileostomy, the smaller intestine and then it was reversed months later(think like 6 or so).  You will get an ostomy nurse for a while to get your adjusted to it and they will come to your home.  If something isn't working right they can adjust your prescription and order new.  Like someone above said, ask companies to send you sample after sample and you will find one that will work for you.  There are also products like skin barriers and adhesives that can help.  Make sure your home health care nurse is aware of your concerns.  Good luck and believe me there are a lot of people out there wearing them that you would never know they have.  Also it wouldn't hurt to join a message board for ostomy users. 

Kim

plsletitrain
Posts: 253
Joined: Jul 2017

And I'm so fine with it I'm not considering having it reversed.  It is very convenient for me because I don't have to run for the nearest bathroom when my diarrhea bugs me.  And I swear I've had my share of embarrassing stories on diarrhea that I'm loving my ileostomy bag now.  

Ucimpark
Posts: 23
Joined: Jun 2017

Hi woodytele,

My husband been with colostomy/ostomy about a year know. 

First, you need to found the right product that will fit you, we used hollister brand. In the beginning he lost his confidence when we are in public. After a while he get use to it and going to the pool too.. they sale the cover for colostomy bag (etsy.com). 

Take care thr skin around the stoma is very important, you can get rash easily. Use the stomy powder is the best. And regular ivory soap is recommend to clean up the stoma area.. good luck!

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