A really stupid question at this stage I know - sorry in advance

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schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 1/8/2009 8:48 PM (GMT -7)   
Honestly, I am nervous as we start to put things in order for my surgery - so please take these questions from someone who is and old UC'er and thought I knew everything to now seemingly to know nothing.
 
How will I learn how to choose all these products and choices I see on the web for the bags, pastes, accessories etc.  When I come home from the hospital I will have to take care of myself - and someone will have to teach me.  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?  I think maybe I am - but I would much rather give her a valentine box of chocalate and flowers than an ostomy kit for the day of cupid?  Any thoughts to help a nervous man?
 
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?
 
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.
 
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?
 
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.
 
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?
 
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.
 
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?
 
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.
 
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.
 
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.
 
Well thats all the stupid questions for tonight - I am sure I will fret, toss and turn and dream up more for you tomorrow.
 
Thanks in advance - I feel so novice.
 
bob 

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 1/8/2009 10:29 PM (GMT -7)   
How will I learn how to choose all these products and choices I see on the web for the bags, pastes, accessories etc. When I come home from the hospital I will have to take care of myself - and someone will have to teach me. 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? I think maybe I am - but I would much rather give her a valentine box of chocalate and flowers than an ostomy kit for the day of cupid? Any thoughts to help a nervous man? -----You will learn by trial and error, lol. actually the thing to do is have your wife with you when the ET nurse shows you the first time. My husband changed mine for me for a while. The way to choose what you use is to get samples from each company and see what works for you! Personally, i think the 2 piece is very nice and i use the hollister new image 2 piece, i like it.

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 is the part that actually sticks to your skin, sometimes they call it flange. I was horribly confused by that at first, lol

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.----Well i am not a man, lol. But you dont' have to rinse it out each time! Just empty it out, then take some toilet paper and clean the end out. Make sure you get it all wiped out then close it back up. You may want to rinse it out at home, and then use a squeeze bottle. I bought bottles at wal-mart that are actuallly the bottles you sometimes get ketchup and mustard in, lol. Works great! But i rarely do that, only if i have eaten something that makes it sticky or thick.

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?---you just flush the toilet paper. My bags come with these brown plastic bags (or you can use ziploc bags) and you just put it in there, seal it up and put it in the trash, no different than a baby's poopy diaper. As for the needles, i would get one of those sharp boxes.

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.---the one piece means, obviously its all one piece. I didnt pick it because if you have a problem wtih the bag, or if you eat something that smells up the bag (like fish) then you would have to change the whole thing, instead of just replacing the bag.

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?-i have filters, i dont know why you would want one without filters. They dont let out odor, suprised me, lol.

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.-----at first you will have LOTS of gas, lol. Some people relase it by unsnapping the top of the bag from the flange and let the air out that way, i dont do that cause that makes a mess, lol. I just go to the barthroom like i am going to empty it and let the air out.

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?----the pads are not necessary, i am one who uses them, just makes me feel more secure. that way if i do have a leak, all i have to do is change the pad not the whole bed. You would just change your clothes, and you dont need a seperate bed. You may want to sleep in a seperate bed at first, just because you are gonna hurt and you won't be sleepign well. You probably wont have leaks that often, i think i have had 2 at night, and those were my fault.

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.----You will empty it when it is about 1/3 full. noone has ever noticed mine, and i have let it get pretty big before, lol. I stayed over at a friends house the other night and when i got up the thing was so full i was suprised it hadn't busted, but noone noticed me walking through the house with it like that, lol.

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.-i dont know about this, i don't shave mine,being a girl i dont have that problem, lol.

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.----as for me, it doesnt' interfere, i just tape it up on itself then cover it with a belly band, some people use tube tops, some men just leave their shirts on. there is no reason it would interfere, it doesn't take up that much room, lol.


DO NOT feel stupid asking these questions, they are all very valid questions andsome are ones i had myself, hopei helped!

Bennie
Veteran Member


Date Joined Nov 2006
Total Posts : 552
   Posted 1/9/2009 12:14 AM (GMT -7)   

First of all, Bob, there are no stupid questions. Everyone who has gone through this/will be going through this/helps someone going through this has had the same thoughts. I posted many, many times the first few weeks after Bratcat's surgery. Some posts were in a terrible panic.

Summerstorm answered most of the questions perfectly.

How will I learn how to choose all these products and choices I see on the web for the bags, pastes, accessories etc. When I come home from the hospital I will have to take care of myself - and someone will have to teach me. 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? I think maybe I am - but I would much rather give her a valentine box of chocalate and flowers than an ostomy kit for the day of cupid? Any thoughts to help a nervous man? -----Bratcat never did a full change of her wafer on her own. In the beginning it took us over an hour for her to peel her wafer off, shower, figure out how to put a new wafer on, etc. It definitely gets better and faster. She was able to change just her bag by herself as she got more confident. Let your wife (if she is willing) learn along with you from the ostomy nurse. We had to go back to the nurse in a panic because we couldn't figure out the whole system. She tried a different brand (Hollister New Image convex) and that made all the difference. Bratcat needed the convex because her stomach wasn't flat and her stoma didn't protrude very much.

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?----- The names are hard to figure out in the beginning. It's also somewhat confusing because there are so many different brands and products. Luckily all Bratcat's supplies were covered under insurance so we bought a bunch of stuff. In the beginning it may be trial and error. Plus your stoma will shrink over time. Don't overbuy. We chose to buy the wafers that have to be cut (as opposed to having a hole precut). Bratcat's stoma was oval so it was easier to cut it to fit.

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.----In the beginning (at home) Bratcat followed the doctor's orders and had to empty her output into a measuring container. This was to make sure she was getting and outputting enough fluids. That didn't last long. She also used a squeeze bottle with water to rinse it. That also stopped after awhile. She would empty her bag into the toilet, use toilet paper to wipe in the opening, and close up.

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?--- Toilet paper got flushed. When she did a change, we would use a plastic bag that the groceries came home in. In went the old wafer, bag, paper towels, etc. Closed it up and threw it right into the big outdoor garbage pail.

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.--- Bratcat chose a two piece system (mostly for the same reasons as summerstorm). She could change her bag and still keep her wafer if it wasn't bothering her. She preferred the clip as opposed to the velcro. She always worried about the velcro getting caught on her clothes (it never did). Many people feel the same about the clip. It's just a personal preference. Order both and try them.

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?- Bratcat tried the filters but for some reason they didn't last as long on her and it caused her too much stress. She LOVED M9 (a deoderizer) that she would squirt into her bag after she cleaned it. It worked great for her.

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.----- Like summerstorm, Bratcat would unclip her clip (over the toilet) and release some air. The first time she/we tried to empty her bag in the hospital we forgot to hold the end up. Big mistake that she/we never did again!

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?---- Bratcat never used a matress pad. She had one leak in bed. She must have turned over and it opened. It got more on her than on the bed. We just did laundry.

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.----Bratcat found it more comfortable to empty more often (1/3 full). She wore babydoll shirts that were a bit longer because she never really liked to tuck her bag in (although she did once in awhile). Maybe you could try some babydoll shirts tongue She went to friends' houses, started senior year in September, and did fine.

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.- I would think an electric razor would be fine. Probably easier on the skin that may be a bit sensitive.

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.----The closest male that Bratcat slept with was our cat, JD (Jack Daniels). And he didn't mind! Honestly you seem to have one of the most romantic relationships I have ever heard of. I think that you and your wife will learn to adjust. Give yourself time to adjust and recuperate.

Keep asking questions. I think knowing that others have felt like you do helps to make this change a bit easier. I'm just happy to see you back on the boards!




--Mom of bratcat (17 years old) and nonamejames (19 years old)--
Daughter bratcat was diagnosed with pancolitis October 2006
Flared Fall 2006, Fall 2007, Spring 2008
Asacol, Rowasa, hydrocortisone enemas, prednisone, 6-mp, Remicade
7/3/08-Step 1 j-pouch surgery and no more meds!
11/10/08-Step 2 reconnect!
 
Son nonamejames was diagnosed with Crohns in Spring 2008
Asacol, Pentasa, 6-mp


Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 1/9/2009 5:13 AM (GMT -7)   
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)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/9/2009 5:29 AM (GMT -7)   

Bob--we are here to help!!!  I'm not going to go  over all the questions since they've been answered so well already...just gonna put in my 2cents:

You will meet with an ET Nurse (please don't ask me to spell that!!) before your surgery.  They will mark the best spot on your stomach for your stoma....that was my first and only tatoo...That may be a great time to ask the nurse to see some products.  It will give you a visual to what everything is. 

After surgery they will be better able to choose the right wafer(flange)/pouch you'll need since the stoma can have some funny characteristics all its own.  Like it was said, you'll be able to get samples later on and unfortunately it is trial and error to find the one you prefer.

Filters help with the gas/air build up and are charchol so they don't smell.  I personally love the Hollister ones since they don't have to be covered up for a shower (some need a sticker or when they get wet they don't work).  It doesn't help while laying down but I empty when I wake and and it works again...technology:)  By having a filter I don't have to "release" gas during the day

I just mentioned on another post...use an empty TP roll to protect your stoma while you shave.
 
Don't worry about getting intimate...you'll forget it is there!!  I know, I know you ask "HOW" but it really isn't an issue.  You'll want to wait to get your staples out first, tho yeah Oh, and you could do a tube top if it is...
 
I could only empty 3-4 times a day (usually right after I eat and before bed)...but I do more...I just empty when I pee.  If I eat/drink something that has a quick transit time I may go just for that, but it isn't really any more than that...oh, sometimes I'll empty if I am leaving the house even if it is just a little so I won't have to go while out.  Imodium/fiber can also control your output so you wouldn't have to go as much.  I don't rinse...just clean the end with tp.
 
And don't worry about leaks...they can happen, but are not usually an issue...I can count on ONE HAND the times I've had leaks in the last 8 years...many of us do carry an extra change (wafer/pouch) in our bags/cars but you know if you have it, you won't need it tongue
 
Keep em coming...
 
 
 

Shaz032
Forum Moderator


Date Joined Feb 2003
Total Posts : 1250
   Posted 1/9/2009 6:58 AM (GMT -7)   
OHIO said...
You will meet with an ET Nurse (please don't ask me to spell that!!) before your surgery.  They will mark the best spot on your stomach for your stoma....that was my first and only tatoo...That may be a great time to ask the nurse to see some products.  It will give you a visual to what everything is. 
 
I will just add to what Ohio said. If you're able, get an appointment with your ET (Enterostomal aka ostomy) nurse a couple of weeks before surgery and ask him/her for a couple of sample bags that you can practice wearing. Unfortunately, I find that in the US, at least, most ostomates don't get to meet their ET until they're in hospital a few hours before surgery and unfortunately, for half, not until after their surgery which is a crying shame in my opinion so this may not be an option.
 
Half fill the sample bags with apple sauce (or something with similar consistency) and NEVER take them off unless they leak or cause excessive 'itchies' (cos you won't be able to after surgery). I remember as a 10 year old, having a party to go to before my surgery and asking my mum if I could take the sample bag off for the party. She nearly relented but then said 'no' because I wouldn't be able to after my surgery and I needed to learn what it was really like.
 
This accomplishes a couple of things:
 
1)  you get a feel for what it's like to wear a bag
 
2) you can determine for yourself, the best position for your stoma
 
My ostomy nurse let me do this before surgery and I think it's a great idea :)


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 7:01:18 AM (GMT-7)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 1/9/2009 10:41 AM (GMT -7)   
I guess I didn't realize that not everyone gets to meet with and ET nurse before hand...my surgeon set it up for me because an ileo was "a possibility" but I didn't think I'd end up with one--so I didn't think to check out supplies!  I like the idea of applesauce in a pouch attached to you...

UC Wife in MD
Regular Member


Date Joined Aug 2007
Total Posts : 63
   Posted 1/9/2009 12:27 PM (GMT -7)   
I guess it's obvious by my screen name that my husband is the one with the bag.  Everyone answered the questions pretty well. Just my two cents..
 
My husband was shown once how to change the ostomy and that was it so I definitely know how you feel.  He just figured it out.  I would do the research on this board and report to him and he would work out the logistics on his own.  Eventually he got it down.  Our insurance covered the supplies so we just ordered a bunch of stuff.  Alot of places, if you visit their sites will send you samples.  I would, again, figure out how everything goes together and then show him.
 
There's not much that your wife NEEDs to know.  I'm sure you guys will figure it all out together.  My husband is very sensitive about his stoma and doesn't even like to let me see the bag.  It doesn't matter to me.
 
Like everyone else said, you will have leaks.  You need to figure out how long the bag will last, depending on how often you shower and your daily activities.  The bags "breakdown" after alot of showering/wearing.  We mostly had problems at night or if he was on day 5 or 6 and the bag would start leaking at the seams.  He just sets an alarm about halfway through the night to wakeup and go empty the bag.
 
Bag disposal - Grocery bags.  He just wraps up all his stuff in old grocery bags and ties them up.  I've never noticed any kind of smell from the garbage.
 
Shaving - my husband just trims with scissors.  Anything under a 1/2 inch doesn't bother him.  He's pretty hairy too.  He uses these skin prep wipes that come with his bags before and he says it really makes a difference when removing the bag.
 
Romance?  :)  I thought the same thing as you.  "It's over. Oh my god, there's going to be a bag of feces hanging off my husband's stomach...why does this have to happen to me?"  I was so wrong in my initial panic.  I thought it was going to be gross.  It doesn't interfere with anything.  My husband wears a T-shirt and sorta twists the bottom of the shirt behind him to keep the bag up and out of the way.  He's very self conscious about the bag but it doesn't bother me in the least.  The only difference pre-bag and post-bag is I don't get to see as much of his skin. Bob - you have nothing to worry about.  I'm sure your wife will be more accepting of it than you will.  You don't need to worry for her.
 
One last thing I will add.  After the surgery his semen was red (blood) and orange tinged the first few times.  This was because of the catheter.  We were a little freaked out at first.
 
 

badbaggirl
Regular Member


Date Joined Jul 2007
Total Posts : 275
   Posted 1/9/2009 1:11 PM (GMT -7)   
I agree with Shaz - PLEASE learn to take care of this yourself as soon as possible. I am a private person myself (well ... after surgery at least). I wouldn't even THINK about having my significant other change it unless like Shaz said, I broke BOTH arms.

And some bags come with plastic disposal bags but I like these bags: http://www.bagitaway.com/ They are black zip locks, and small. I always keep an appliance and an Eakin seal in a that bag in my car or purse (or maybe for the guys in a discreet place at work) in case I have a leak. I get my supplies from Edgepark and they sell these bags there. My insurance covers it.

Good luck and keep us posted!
BadBagGirl
Crohn's Disease, Colostomy due to cancer and I make darned good dill pickles.


Pibbin
Regular Member


Date Joined Apr 2008
Total Posts : 163
   Posted 1/9/2009 4:10 PM (GMT -7)   
At the time of my discharge from the hospital following surgery, my surgeon wrote orders for Home Health. I had a Home Health RN come to my house approx 2x/week, and she helped me change my pouch, figure out the right supplies (from all the samples I had been sent), etc. This lasted for about 3 weeks, until I was comfortable enough with the process to do everything independently. My husband observed a couple of times so that he would be able to help if needed, but it was ultimately not necessary. The ET RN was also a great support prior to surgery, and also while I was an inpatient.

I remember that when I was discharged home I was still pretty grossed out by the stoma, pouch, and the entire process. Amazingly, by the end of my home health visits, I was very comfortable with everything. It's a process!
Dx Mild Proctitis 7/06 at age 33, Dx Severe Pan Colitis 5/07, Dx Crohn's Colitis 10/07
Failed Asacol, Lialda, 6-MP, Canasa, Rowasa, Proctofoam, Entocort, Remicade, Humira
10/10/08 colon removed, temporary ileostomy
11/10/08 FINALLY off prednisone after 18 months
2nd of 3 surgeries planned for Jan '09 to form j-pouch


schrek-chewbacca hunk
Veteran Member


Date Joined Jun 2005
Total Posts : 2666
   Posted 1/9/2009 8:39 PM (GMT -7)   

I do thank you all for the support.  I do really need it in that my head is spinning with all these "what-if's" and doubts. 

As I had mentioned earlier, I was a forum mod in UC a couple of years and a member for a long time - and now I am able to see once again how valuable this place is - and what a blessing you all are. 

I am not bringing my concerns up first with my wife until I learn more about them here - and I am sure with my doc.  This is so the right decision as it will give me back a measure of my life - not one I would have opted for - but one that works better than being stuck in a room in the house all day long.  I can't condemn my wife to that life -or lack thereof.  So off we march to become an ostomate.

You are giving me the courage to move forward - though as we get closer I will have my fear manifested more no doubt.  I know I can count on you all. 

 

Sincerely,

Thankyou - bob

 

 

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