How will I learn how to choose all these products and choices I see on the web for the bags, pastes, accessories etc.
By experimenting :) I'm a 'less is more' type of girl, the less I use, the less chance I have of getting skin irritation, being allergic to products, etc. Some people use heaps of ostomy products, some use the bare minimum. You will learn which ones you need to use (and which ones you can ditch) by experimenting after surgery.
When I come home from the hospital I will have to take care of myself - and someone will have to teach me.
You can do it! Your ostomy nurse will teach you, hopefully while you're in hospital. In Australia and I think, the UK, we're not allowed home until we can prove we can change our bags all by ourselves (I was in hospital for two weeks), although in the USA I don't think this is the case and they tend to send you home sooner.
From what I can gather, if you're in the US, you'll have a visiting nurse at home for a few weeks after. My parents have only seen my stoma once and that was while I was in hospital right after surgery. After I got home, I did all my stoma care by myself. I was 10 years old at the time.
Perhaps I should then teach my wife - she is much more formidable than I give her credit for after putting up with me for 16 years and my health issues for the last 10. What do you show/teach your spouses - or am I being chauvanistic here?
You're not being chauvenistic. A lot of ostomates show other family members how to change their bag but, in my opinion, it should ONLY be in case the situation arises in the future that you're unable to do it by yourself, eg you break an arm or similar. Otherwise you should be able to do it for yourself (barring any obvious disabilities). It's the first step to independence after surgery.
I've had people tell me their spouse always changes their bag for them and that it's their 'bonding' time. To me, there's heaps better ways to bond lol. I always ask 'did their spouse wipe their backside before surgery?'. It's much the same thing. If the answer is 'yes', then obviously, there's a reason, eg disability, for their spouse to change their bag for them, otherwise, it's your responsibility.
I have heard and read on this site and others the term "wafer" - but when I went to the holister web pasges for one and 2 piece systems they are not using the term wafer. Obviously I am missing something pretty obvious here - Can you help undo me?
Wafer = flange = base plate.
When you rinse and clean your bag, how do I do that in a mensroom stall - Do you march up to sinks and just scrub up? I think I am missing something here too.
Most nurses do teach you to rinse when emptying. If you are having an ileostomy, you'll soon learn that rinsing and cleaning when you empty is pretty useless. Two minutes later, it's dirty again. However, having said that, I know of many people who won't go without rinsing. It's personal preference and either way is fine.
I just empty my bag (by squeezing everything out the tail end), then wipe the tail over with toilet paper and then do up my bag.
With a colostomy, stool is a bit thicker and rinsing may be necessary to help get rid of the stool. A small 'squirt bottle' full of water will do the trick while you're in the stall.
Also, What do you do with the bag (and the cleaning supplies like tissue-they must have feces on them-right?) when you dispose of it? Like what do you put it in? Another really stupid question. I am sure you will just say the trash - but how I dispose of my insulin needles is a concern for me - are there concerns for the bag?
I use scented nappy (diaper) bags. Very cheap! Remember, stool is manure. Lots of people put manure in their garbage :)
When I went to the site I really got confused with all the options - most being one piece and two piece systems. What are the differences and pros/cons of each? I know another stupid question.
This is entirely personal preference.
A one piece bag (which I use) means that the wafer (flange, base plate) and bag are all in one piece. You can't separate them. With a two piece you can.
Advantages of one piece:
Quicker change, I only have to worry about putting one piece of equipment on.
I don't get paranoid and keep checking to make sure the two pieces are joined together properly.
If you have to pay for your supplies (as in the US), one piece are cheaper.
Advantages of two piece:
You can interchange bags between large and smaller ones (which you may want to use for intimacy, swimming, etc).
When applying the flange you can line it up over your stoma without a bag in the way.
Some people prefer the one piece and others prefer to use a two piece. You'll work out which one is best for you by experimenting (I'm sure I've used that word before lol - a lot of stoma care is experimentation because what works for one person probably won't work for another).
What do they mean ny bags with filters and without? Why would you ever want a bag without a filter - unless it is something I am thinking incorrectly about - filters help with odor right?
They're supposed to let gas out odourlessly and stop the bag ballooning. In theory, it's a great idea. In practice, normally, after the first night, with an ileostomy, the filter gets clogged up from stool and becomes useless and won't let any gas out at all.
When they say to release gas from the bag - how is that done and how many times will I have to do that a day/night in addition to emptying my bag.
Hmmm... there is a term we use called 'burping the bag'. This basically means, we open the bag to release the excess gas so we can postpone going to the loo to empty (it gives more room in the bag for stool). One piecers burp the bag from the tail end (I can do this while lieing down in bed at night) and two piecers burp the bag from the neck end by carefully separating the bag from the wafer (I tried this once when experimenting with a two piece and ended up in a mess lol but I obviously wasn't doing it right cos the experts say it works just fine). Usually, you will only 'burp' your bag if you're by yourself, otherwise the smell can be lethal and strip the paint off walls!
I have heard of mattress pads being a necessity here - Why, if the bag is on? Do they leak - then what about my clothes? In bed what about my wife? Do I need a separate bedroom?
They're not a necessity, just an extra precaution for some people's peace of mind. I've never used a mattress pad but some people like to in case they have leakage whilst asleep. However, I DO use a mattress protector which is a material protector(available in grocery and variety stores here in Australia), rather than a plastic pad (which makes me sweat excessively, even in winter) and I find makes things softer and more comfortable, I'd probably be tempted to use one even if I didn't have an ostomy. If I do happen to leak, the mattress protector gets it and I can wash that.
At first, I won't lie, you probably WILL have some leaks, esp while you're asleep. As you experiment (there's that word again) and find the best products for your skin type, leaks should become a rarity and you'll gain confidence in your system to work properly for you. You won't need a separate bedroom. If you DO have a leak at night, politely wake your wife with a 'wakey wakey dear, don't roll over, but do get out of bed so I can change the sheets'. It won't happen too often (maybe never), usually only until you find the right system for you.
Leakages can, and will, occur, for various reason, eg you haven't put your bag on properly, your bag has become too full to contain everything, etc. Once you work out the right pouching system for you, leakages should become few and far between. Nowadays, I usually get leaks approx 2 - 3 times a year but they're all my fault, ie I've pushed my weartime too far. I've been too lazy to change my bag when I know I should and have tried to push weartime just one more day... and it hasn't worked out the way I wanted it to.
After a while, most ostomates develop a 'sixth' sense and wake up automatically when their bag is full before any damage is done so they can empty. about 50% need to wake up at night and empty (some like to set their alarm clock so they can get up and empty before their bag gets too full). The other 50% are able to sleep through the night without a problem before they have to empty.
In 33 years I've had 3 'major' public leaks, 1 while at school, 2 at work (but no one ever knew but me) cos school bags, handbags, jackets, etc can cover it while I go home to change. If I do find I've developed a leak whilst out, it's usually before it's done any major damage to clothes, etc so I just go to the nearest loo and change.
As a wise friend said to me once: "no one has ACTUALLY died of embarrassment (no matter how much we'd like to)." You do live to get through another day :)
How many times should I empty my bag - how will I know when - if it swells up like a balloon where I have read in another post - will not the entire world know? If nothing I am discreet by nature. Perhaps this is something I will have to get over.
Ileostomates usually empty between 4 - 6 times a day, depending on what they have or haven't eaten. Some do empty more, some empty less, it's individual. They do say to empty when your bag is between 1/3 - 1/2 full though I've been known to go longer more than a few times. Loose shirts cover a multitude of sins :) If your bag does balloon under your clothes, so what (I'm still a rock star, got my rock moves, AND I DON'T NEED YOU - sorry, I have that song in my head today for some reason lol)? Most people won't have a clue what they're looking at anyway and will presume it's just the way your clothing is lieing at the time. You will probably find you develop the habit of checking with your hand with a quick 'feel' over your clothes, to find out how full your bag is. No one will know what you're doing.
Since I go by chewbacca, you can guess that I am a furball. Can I use an electric razor for my stoma area? The thought of using a blade down there just sends me up a tree.
Put an empty toilet roll holder (the cardboard part) over your stoma. That way you can avoid any accidental knicks :)
For the gentlemen in the room, I am thinking that romantic ideas are now probably out of the question - I know - more stupidity as I have read that it does not intefere with romance - how can it not? I mean from a pure physics perspective. The gentlemen may want to post a separate response addressing gentlemen so that the ladies not be offended by such a tender topic.
You'll be more 'able' in that department since you won't be running to the loo all the time :) Just make sure you empty your bag before hand. Oh, and no first thing in the morning before you empty :)
Most partners don't care you have a bag. They just care that you're well and able to be with them. If a bag does put them off, then you don't want someone that shallow anyway. You will probably worry more about your bag during intimacy than your wife will (most ostomates do). You can try either taping it down (so it doesn't flop about), wear a woman's tube top around your waist to cover the bag to keep it in place, or just let it be. Others will be able to give you other suggestions as to what they do to keep it all in place. Besides which, when you get down to it, I'm betting you're not really concentrating on your bag at the time anyway.
I will tell you one thing. From talking with ostomates over the past 10 or so years I've found that if your current partner DOES leave you because you've had ostomy surgery, there's usually deeper underlying reasons why they're leaving and your ostomy is just a convenient excuse. Usually, there's been problems before the surgery that are the REAL reasons why they leave.
If it's the impotence issue you're thinking about, rest assured, that ileostomies for UC usually only bring about temporary impotence (if any). It's usually with cancer, that they cut deeper and may knick some nerve endings. In both cases, viagra and similar can and do help.
Well thats all the stupid questions for tonight - I am sure I will fret, toss and turn and dream up more for you tomorrow.
Actually you wouldn't believe some of the stupid questions I've been asked. One of the classics was 'instead of taking a headache tablet orally, can I now put it in my stoma instead?' Now, THAT's what I call a 'stupid question'. Yours are actually common concerns most ostomates to be have :)
I have had an ileostomy for 33 years now due to UC.
Moderator of the Ostomy Forum
I'm not a complete idiot - some parts of me are missing!
Post Edited (Shaz032) : 1/9/2009 7:13:49 AM (GMT-7)