do any of you drink beer?
I hate beer (and I'm an Aussie - go figure lol) but I love Baileys yumm. I know that doesn't have bubbles but Pepsi and other soft drinks do and I drink those without a problem. It might give me some extra gas but hey, I either just burp or empty it, no problem really.
And how does one "burp their bag"?
Usually those with a two piece bag, separate the bag from the wafer at the top and let the gas out. Those of us with a one piece bag just open the tail end to let the gas out. Warning: DO NOT do this in company - the odourous results can be lethal!
Did you have to try many different types before finding one that suits you?
Some do, some don't. A lot of people are lucky enough to find a system that works for them straight away, for others it can sometimes take a bit longer.
And when you take a shower, do you leave the bag on?
Again, some do and some don't. I leave my bag on most days during my shower except when I change - then I take it all off and shower with a naked stoma. If my stoma 'works' during my shower it all goes down the drain anyway. Some don't like the idea of pooping in the shower however and never shower without their bag on. It's personal preference.
If I leave my bag on, I just towel dry it after I hop out. Body heat usually gets rid of any excess moisture pretty quickly.
How often do you change the actual bag, once a week or so?
Like everything else regarding stoma care, this is sooooo individual. Average weartime is about 3 - 4 days. Some people can't go that long but others can go longer. You'll work out what the optimum weartime is for you.
And the wafer stays on longer, or is it the other way around?
If you wear a one piece bag, the whole thing must come off since the wafer is attached to the bag part.
If you wear a two piece bag, you can leave the wafer on if it's still viable and simply change to a new bag.
What about the smell- I've heard of using benzoyl peroxide, or those drops that manufacturers sell?
I LOVE 3% Hydrogen Peroxide. Ostomy odour can be lethal (as mentioned above) but since using HP I've had no odour at all. There are various ostomy deodorisers available from manufacturers but since they are aimed solely at the ostomy market, they're a lot more expensive than HP.
And how long did it take before you were %100 comfortable with the bag- changing it, emptying it, etc?
I was changing my bag by myself once I got home from hospital - but I was 10 years old and kids are a lot more resiliant than adults and just do it (I was also in the pool swimming 1 month after surgery - something a lot of adults wouldn't even contemplate!) That very first time you change by yourself, you'll probably be nervous but you'll be so proud of yourself. It's the first step towards becoming independent again :)
Do you open the bag from the bottom to empty it?
Yep, bag usually have either a clip or a velcro closure at the bottom of the bag for ileostomates so we can drain poop into the loo. For colostomates, they have the option of using closed end bags which means they just change the entire bag rather than drain since their stool can be a lot more solid than ileostomy output and doesn't drain as easily. Of course, ileostomates have the option of using the closed end bags too (I know of at least one who prefers it) but to my mind it's a lot easier draining it than changing the bag all the time.
And are all of you happy with the choice you made- do any of you wish you had gotten a j-pouch, or for the ones with a j-pouch, do you ever wish you had a permanent bag?
When I had surgery 31 years ago, the j pouch was still very new and my rectum and anus had to be removed a year after my ileo surgery (nowadays they would probably have just scraped the rectal lining out and left everything intact so j pouch surgery would have been a possibility for me, but back then the technique was unknown). However, I am completely happy with my ileo and wouldn't trade it back for UC for all the money in the world.
Would I have j pouch surgery if I could? Probably not. I really don't want more surgery to trade something that isn't broken for something that will probably work out well but mightn't lol
And speaking of nuts, were you eating mushy bland foods for a while?
You will probably eat bland foods for the first couple of weeks or so but once you have healed, you can start introducing new foods into your diet, one at a time. I can eat anything I want without a problem (and it shows!).
Hope this helps :)
I have had an ileostomy for 31 years now due to UC.
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I'm not a complete idiot - some parts of me are missing!