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Regular Member

Date Joined Feb 2007
Total Posts : 420
   Posted 7/14/2008 3:45 PM (GMT -6)   
SO - I was thinking about how I wish I could hang out at hospitals and talk with people who have had ostomies. When I had mine, I wish I had an ostomate to talk to in person, right there in the hospital. That was when I was hte most scared a nd nervous and upset.
I thought we should compile a running list of advice, simple little hints and tips, words of wisdom, and even funny things, then people having the surgery could even print it out and bring it with them to the hospital, maybe. Here's my contributions (in no order) so far...anyone want to add? I'd be happy to cut and paste everything into one big document.
- Ostomies do not hurt once they are healed.
- Keep trying bags and systems until you find the one that works for you.
- Stomas will change size. It will most likely get smaller as it heals. You may need to change the size of the bag or cut it smaller as well.
- Add foods slowly, Keep a food log. That way you'll know if something gives you a problem. A lot of ostomates can eat most anything.
- If you experience leaks, try convex wafers, eakin seals, and/or stomas paste.
- Be careful with stoma paste. It is sticky, and WILL get tangled up in long hair, as evidenced by our very own summerstorm.
- You are not bleeding to death - you ate something red.
- Your stoma will bleed a little, however. This is okay.
- You will be able to excersize, swim, rock climb, ride bikes, ecetera again.
- People will want to date you, you will still be desireable, your love life will still exsist. You are still great looking!
- Output  will thicken up and slow down eventually. Try starches, applesauce, or pasta to thicken things up.
- A couple marshmallows may help stop things up if eaten before a bag change.
- It's okay to remove everything and take a shower, letting it all "wash away" down the drain. It's okay if you don't want to do this. Just shower and dry your bag with a hairdryer (on low).
- Glad Press 'n' Seal will stick against your skin, and you can use this to keep the bag dry in the shower as well.
- Keep a few small size garbage bags in your supply bag. If you need to change in public, you can wrap the bag in the garbage bag, and dispose of it more discreetly.
- Clothes will be comfortable again. You may wear your waistband either above or below your stoma, whichever works for you. Some wear there bags sideways, across their bellies, and some redistribute contents if they wear their waistbands below their stomas.
- Message boards such as HealingWell can help. Please ask questions.
Any more ideas? I'm sure we've got LOTS of snippets of advice.
If at first you do not succeed, then skydiving is surely not meant for you.
Jo - UC, total colectomy and ileostomy on August 24, 2008.

Veteran Member

Date Joined Dec 2007
Total Posts : 739
   Posted 7/14/2008 5:25 PM (GMT -6)   
hey jo, its a great idea
how about info on the posts about what to take to the hospital

u know the small pillow for coughing,sneezing and laughing
the eye covers for sleeping
books or crosswords
gas x

i 4get everything else, but there was a lot of helpful info when i was going in

o and of course....its no where near as bad as the idea of it seems
25 y/o female- crohns disease since 14
Ileostomy pending-very worried
Tried asacol,pentasa,prednisone,remicade,6mp,azasan, no avail
Seatons placed
Worst year ever!

"For God has not given us the spirit of fear....."
Where does mine come from?!
 Temp Ileostomy performed 1/29/08
Still Adusting
 Healingwell.com has been my Godsend...Thank you

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/14/2008 8:16 PM (GMT -6)   
Glad to see my name in there, lol

It is so funny that you started this topic, cause i was just thinking today, that i wish when i had gone to see the ET for the first time, there had been a list of random things like this. I was trying to figure out who I could talk to to get a list like this out to people. I want to be able to talk to patients and such also, but i dont' know how to go about that.
Here are a few more:

Cheap towels from wal-mart cut into squares are great for changes, just wash them alot first, to get to the lint off.

Spray breath freshner is small enough to fit in your pocket and works as a cheap air freshner for public bathrooms. Plus, since you can use it to sanatize the seat!

Output changes depending on what you eat, don't freak out if you see your dinner in your bag!

To add onto the red thing, it doesn't take much red to make it look like you are bleeding to death!

Veteran Member

Date Joined Nov 2006
Total Posts : 552
   Posted 7/14/2008 9:41 PM (GMT -6)   

I think it is a great idea. My daughter is 11 days out from her surgery. Every day there is something new we wish we could talk to someone about. Most of all, I wish we could meet another ostomate. Just to know that most of the things she is feeling--the incision hurting, the ostomy barrier itching (she hates having anything on her), how it feels in the beginning when food passes through. How to wear the bag with clothes (right now she is wearing a pair of shorts with the bag hanging out and a long shirt over it).

Also, I know it is easy to get samples from the different companies but I wish someone could come with almost every type of appliance so we could see them in person (I guess I am a visual person).

I know from reading all of the posts from the experienced ostomates that all these small issues pass and aren't so big in the long run. But at the moment, they feel monumental.

--Mom of bratcat (17 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Current meds:
Asacol - 4 pills/3Xday, 15 mg prednisone, Remicade
11/14/06 - started prednisone; 1/28/07 - finished prednisone!
3/3/07 - began to taper off hydrocortisone sloowwly! Summer 2007 - slowly began tapering Rowasa. 9/07 -- flaring? Nightly Rowasa. 9/21/07 -- added hydrocortisone enemas. 9/30/07--added prednisone. 10/31--started 6-mp, stopped the enemas. Started lowering prednisone. 3/08-another flare!  7/3/08-Step 1 j-pouch surgery

Veteran Member

Date Joined Jul 2007
Total Posts : 2765
   Posted 7/15/2008 1:37 AM (GMT -6)   

This is a great idea! Here are a few more tips to add to your list:

- hydrogen peroxide and mouthwash are inexpensive deodorizers

- shave the hair around your stoma and use an adhesive remover wipe for easy and painless wafer removal

- you can swim for hours without the wafer coming off

- you can dress stylish, and the bag does not show under your clothes

- it really doesn't hurt that much to have your rectum removed

- you don't have to remove the entire bag to empty it (I used to think that before surgery!)

- once you get used to it, you can't tell the bag is there anymore

- you will most likely be healthy, since having the surgery removed an unhealthy intestine or rectum

:-) Cecilia
Dx'd Crohn's in '99 at 28. Proctocolectomy and ileostomy in '06.
Disease-free, medicine-free, and very thankful to be healthy again :)

Veteran Member

Date Joined Feb 2003
Total Posts : 1251
   Posted 7/15/2008 5:55 AM (GMT -6)   
- Always remember to put a new bag on after taking the old one off! (don't laugh! A friend of mine was in a rush and didn't remember until she was almost out the door - she got a nasty reminder lol)

- Do talk to as many people who have had surgery as possible. Ask your surgeon if they have a list of people willing to be contacted and speak to people on forums like this one.

- Allow yourself time to grieve - it's like the process of grieving after someone you love dies, except in this instance you've lost a part of you. First comes the denial (I don't really need this surgery), then the anger (why is this happening to me?), the bargaining (maybe if I eat better/try this med/etc I won't need surgery), the depression (this one's obvious) then eventually comes acceptance.
I have had an ileostomy for 32 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!

Veteran Member

Date Joined Aug 2006
Total Posts : 6571
   Posted 7/15/2008 7:38 PM (GMT -6)   
-hydrocortisone cream on the bandaid part of the wafer will take it right off!

-it's ok to get depressed or freak out about having the bag sometimes. Especially at first. When that happens, start thinkign of all the things having the bag is letting you do.

-If you are worried about noise, a few squares of cloth placed on top of the bag will muffle the noise, and they dont' show.

-2 gas-x before leaving the house keep the gas away.

-IF i am going somewhere i know there won't be a bathroom nearby, or if i am going out and dont' want to have to empty, i take two immodium before leaving.

-Make sure the tail of your bag is closed. (yes i have done that, lol)
-Make up some sets of changes, a wafer precut, a bag, some towels, a trash bag, and keep those ready at all times, in case an emergency comes up.

-you can practice changing with a toilet paper roll and two pieces of cardboard.

Regular Member

Date Joined May 2008
Total Posts : 34
   Posted 7/16/2008 8:58 AM (GMT -6)   
One of the biggest things for me was getting used to having my intestine attached to my outer body!
It just feels so weird when you can feel every little motion that the intestine is doing!
You get used to it though and its kinda funny, once you get used to it.

I use closed end bags,, Hollister New Image models and have liner bags that slip inside,,,
I try to have 3 or so ready with liners so when I have to do a change its so quick, snap the old bag off, wipe the stoma with a alcohol free baby wipe, snap the new bag on, pull out the liner, throw in toilet, flush, carry on... :) Takes maybe a minute,,, if that!

Like others have said, keep trying different appliances till you've found what suits you best!
My Ostomy nurse was a godsend for me! :-)
a perforated Diverticlum survivor and colostomy wearer, awaiting resection

May 02/2008

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