Things I Wish My Ostomy Nurse Told Me

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Regular Member

Date Joined Jan 2007
Total Posts : 184
   Posted 3/10/2007 10:56 PM (GMT -6)   
Hi All!
I bumped into my ostomy nurse and we got to talking about people who will soon have ostomies.  She expressed that she wants to put together a  pamplet for future patients about ostomy care and living with an ostomy.  So she asked me to assist with the patient's view.  I told her about taping my ostomy up with athletic tape prior to intercourse, using glad press and seal for showers, and I want to through this out to the forum: what tip would you give a new ostomate?

New Member

Date Joined Mar 2005
Total Posts : 19
   Posted 3/27/2007 9:48 AM (GMT -6)   
Not been too impressed with my ostomy nurse. have to say, got most of my advice from other ostomists on crohns zone. i would say use Lift off or similar spray to remove base plate especially in the early days and especially as in my case if base plate placed over staples. (mine tore out as i wasn't told and it was very painful) also more advice with cutting out a template would have been appreciated and it would have been nice to hear how if its the wrong size the peristomal area can get really sore. Hearing about cavilon sticks to give a good barrier would have been useful and using orahesive powders to stop the soress. Also info on sites like this would have been good. i've spent hours hunting for support groups on line. Felt really isolated before i found some.
Advice about clothing would have been useful as i lived in a dressing gown for six weeks as stoma was so sore. only just wearing clothes again now. This is a good idea so hope the leaflet helps new ostomates.
chip girl x

New Member

Date Joined Jun 2006
Total Posts : 16
   Posted 4/6/2007 10:49 PM (GMT -6)   
I wish I had known about using regular peroxide in your bag to get rid of the smell when you empty it!!  I had been embarassed and self conscious since I had my surgery in 1990 about going somewhere and having to use the bathroom and having that awful smell, it does not smell like a regular bowel movement.  Especially when you first get up or also depending on what you eat.  I only learned of the peroxide remedy last year by reading this forum!!  It is only like 50 cents a bottle at Wal Mart and all you do is put a few drops or just pour a tiny bit in your bag and it eliminates that smell, that is one of the best tips I ever got.  For years I did not want to travel or stay somewhere other than my own home because of the fear of the smell when going to the bathroom. 

Regular Member

Date Joined Nov 2006
Total Posts : 127
   Posted 4/8/2007 7:01 PM (GMT -6)   

LFW, Do you keep a small bottle of peroxide with you at all times?  My husband is going to have surgery in June and I'm trying to gather as much information for him as possible.  He is concern about "smell" and your advice about peroxide makes sense. 

Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 4/10/2007 3:04 PM (GMT -6)   

Hi, I sure wish my nurse would have told me about odor drops.  In the hospital the room reaked and at home it was bad. I have an ileo and my nurse said it shouldn't have an odor.  But it did and still does.  But thankfully I found out about the odor drops and that was after 3 weeks of stink!  This made my room and bathroom smell so much better. 



Regular Member

Date Joined Jun 2004
Total Posts : 231
   Posted 4/12/2007 12:26 PM (GMT -6)   
I found pictures of ostomies at Shaz's Ostomy Pages site. Before my ileostomy I wanted to learn everything. And there is no way as good as talking to folks in the same boat. You soon realize that each one of us has their own routine, and so forth, but a lot of it is trial and error. My tip is never to open your bag to expell air while laying down in bed.

Regular Member

Date Joined Feb 2007
Total Posts : 430
   Posted 4/13/2007 4:13 PM (GMT -6)   
Chip: I can't believe how little information you received before your surgery! That's really upsetting. Everything you mentioned that you weren't told, I WAS told by a terrific ostomy nurse. My ostomy was not over the wound so that's something I have no experience with but it can't have been fun trying to get the plate off without tearing out every staple in the incision!

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 4/17/2007 9:53 AM (GMT -6)   
SJ30, Oh yes, there are days when the odour can strip paint off the walls (depending on what I've eaten - garlic, fish and onions are esp good at making really bad odour for me though that doesn't stop me from eating them)! It really can be that bad lol.

The good news is that there are special deodorisers for ostomates you can buy to help stop the odour. However, if you invest in a bottle of 3% hydrogen peroxide, a squirt into your bag every time you empty it does the job just as well (if not better in my opinion) at a quarter of the cost of the deodorisers aimed esp at ostomates.

What your doctors and nurses are probably referring to is that you won't smell whilst going about your normal day to day living - the bags are odourproof. It's only when you empty there's an odour - but then, even 'bowel intact' people smell when they poop.
I have had an ileostomy for 31 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Glad Bag
Veteran Member

Date Joined Mar 2007
Total Posts : 699
   Posted 4/28/2007 11:28 AM (GMT -6)   
i've only had mine for a week and so far, not once has the smell been bad. just lucky I guess!

Veteran Member

Date Joined Dec 2006
Total Posts : 1986
   Posted 4/28/2007 11:50 AM (GMT -6)   
If you're on antibiotics, it tends to help the smell. When you stop taking them, you'll really need some drops. I swear by the M9 drops.
25+years diagnosed with CD. 
Numerous surgeries, permanent ostomy, adverse reactions to Remicade, currently retesting, trying to figure out a new medication protocol.

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