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.