Silly stoma questions

[persephone300]

Sorry, I'm not sure what to call them - as everyone seems to call things differently on here, but...

Do people find that "accidents" happen quite a lot with a new or otherwise stoma/hole/colostomy bag?

Is it right that they come with some sort of cover - so you can't see in them, and then the plastic doesn't stick to your skin?

Does the bag just get emptied a lot, or changed, I know this would vary from person to person, but roughly, how does it work?

Just trying to get more information to inform me re the surgery plunge!

 

[skippy111]

well the bags come either one or two piece depending on what you choose, I use the two piece.

I was operated on a thursday and it took a few days for the bag to start working. at first it was really liquidy as I was on an all liquid diet... I will admit, the first week or so you will need to keep a close eye on the bag as it will fill up quickly and changing it/emptying it can be a bit of a mess but after a few days or so once you get to where you can eat solid foods, you will get the knack for emptying and changing it.

The first time my stoma and bag started to work it caught me completely off guard.. I was still in the hospital and had taken a shower. I had taken off the flange and bag... had new flange and bag on the bed with supplies etc and once I got out of the shower and went to the chair next to the bed, BAM!! Stool came shooting out of the stoma and was all over the chair and floor...

I cleaned myself up first... put on clean flange and bag, then had the nurse have housekeeping clean the mess on the floor ...

once I got home, after a week or so, I was able to empty and change the bag with no fuss no mess...

Good luck and keep us posted!

by the way, in the stoma subforum is a thread with videos showing you a bit about how to change your bag and the different types there are. they are very helpfull.

 

[persephone300]

so it sounds like after a couple of weeks, "accidents" are less normal, so I should just expect some to begin with and then when I'm used to it, hopefully shouldn't have to ever worry about needing the toilet again!

 

[2thFairy]

I only had one accident, and that was while I was still in the hospital and the nurse didn't put the bag on correctly. A lot of people have a couple of blowouts at night, where gas builds out and literally blows the seal loose on part of the bag, but that hasn't happened to me either. I have woken up with some close calls, but no leaks or accidents in bed.

I have a bag cover that I will use when I go out of the house. I does help keep the bag separate from skin and therefore it doesn't stick to your skin, but I use mine because I don't like to tuck the bag into my pants. I leave the bag hanging outside of my pants and wear long shirts to cover it up. I use the bag cover just in case the wind were to blow my shirt up exposing my clear bag with green poo.

You can buy bags that are not clear in the front, but I like the clear ones so I can see what is going on.

More about accidents.... the first few months your body will be readjusting A LOT and changing from day to day. Your whole sleep routine will change too. After relatively short period, however, you develop a routine and start to have a sense of when to empty, when to change the bag before before a problem develops, and even when to wake up to avoid a blowout from gas. It's really pretty cool!

 

[Samboi]

No real accidents so far (knock on wood!)
My bags are not see through and are covered with - hmm - not sure how to describe it! It's like a fake fabric kinda feel. It feels ok to touch and against my skin. It's plastic underneath - with the good old trusty crinkle sound I have grown accustomed to.

For about three months after my surgery - I had to empty my bag a lot. Also had to get up once or twice during the night to empty. Now - it has settled a lot. No more night empties (the occasional night bag burping is required). Only empty my bag 2-3 times per day. Very easy to look after.

I use a two piece. Change the base plate every few days. Change the bag every morning after my shower.

Some people adjust really well post surgery - I did not. I'm absolutely a-ok with my squeaky little Stoma now - but it has taken a long time. And I wanted the surgery!!
Good luck with yours - I hope it all goes well for you and you adjust well.

 

[persephone300]

Thanks for all this, it's always best to get as much information as possible. Want to go into things with my eyes wide open!

 

[2thFairy]

I just posted 2 new pictures in my profile album...one before surgery and one after surgery. I use a clear Coloplast bag one-piece and it has a carbon filter in the very top. You can see what that looks like.

Be prepared to see what a stoma looks like before viewing my picture, because you can see that too. It was shocking to me to see what they look like before I had surgery. Now, its no big deal!

 

[persephone300]

do you feel that you've had body image problems?

I've put on so much weight, undoubtedly through lack of walking anywhere - I'm not even sure it would "sit" right on my body, or I'd be able to see it through the folds of fat!

I just always assumed when I was feeling better, and lost weight, that I could finally look in the mirror and accept what I saw for not being perfect - never would be - but being slimmer and better than now - but having a stoma would render that surely impossible.

 

[2thFairy]

I expected to have major body image problems, but I really haven't. I guess for me the fact that I feel SO MUCH better now just sort of took over all other concerns.

A stoma nurse will look at your tummy when you are sitting down in order to determine the most natural place to position the stoma. Because I am very short-waisted, it was a bit of a trick, but she got it positioned perfectly. The stoma nurses are typically really good at what they do and I bet there will be no issue finding the right place for yours!

 

[persephone300]

Thank you! I just keep thinking of all the things I can do afterwards - go for a long walk after lunch maybe, have an outside picnic, wildlife parks - all outside stuff that I've avoided for so long - but all involving exercise - hopefully the weight will pour off anyway

 

[skippy111]

The Bags with the filters on the top are great! They vent out the air and help avoid Blowing a gasket, as I call it, lol

 

[PsychoJane]

Do people find that "accidents" happen quite a lot with a new or otherwise stoma/hole/colostomy bag?

Hmmm for that part it really depends of the way your stoma will be "made". Some people are more lucky than other depending of the surgeon and techniques I guess. Depending if the stoma is protuding or not, depending is you have some sort of depression around the stoma site, all these things will make it more or less favorable to accident. It's always a bit worse at first, both because the stoma heals and everything adapts, but also because we are not as skilled with the appliance. In 13 years I've only had a few serious accident that were ackward and wayyyyyy less since I changed to another type of appliance (that makes a HUGE difference!). I think since I've changed with the one I am using now, I haven't had one in two years.

Is it right that they come with some sort of cover - so you can't see in them, and then the plastic doesn't stick to your skin?

My bags are opaque. I've always had them except when I got the surgeries done because they need to keep an eye on them. I feel better when I don't see the content and as Samboi said, it's ok against the skin. I never had skin irritation caused by the bag itself.

Does the bag just get emptied a lot, or changed, I know this would vary from person to person, but roughly, how does it work?

If you eat lot's of fiber, you will be stuck changing your bag numerous time. Like, I avoid eating much after 8h let say, and I prefer stuff that does not bulk when I eat in the evening. Sometimes I just don't care but that implies I'll have to get up and empty my bag around 3-5:00 ish. So heavy eater = lots of output which is quite coherent. I'm not a big eater so I would say I empty my bag roughly... 5-6 times during the day (to be honest, I don't really pay attention to it when I am in my things). At first it's a bit hard to gage as your small intestine is not adapted to absorb the water. Once it's adapt, you learn how much time it will be until your food gets to the other end. I'm usually able to time my food intake and any need to empty through the day if I have events or place that I know I won't feel comfortable emptying let say.

 

[Terriernut]

Accidents do happen occasionally. I will hold my hand up and say I've only had one that wasnt MY fault! The bag was dodgy and it leaked at the side. Nothing I did. The other few times, I left it too long between changing my flange/wafer. I use a two piece system.

When you first get started after surgery, generally you will be on a one piece system. (frankly I think its so the stoma nurses lives are easier) After surgery, once things have calmed down (your output will be more liquid for a few months after surgery, and your stoma will shrink) you may wish to try a two piece system.

Have a good read through this subforum. It's full of info, and humour!

Good luck on your upcoming surgery. I think most of will tell you, life is LIFE again now. As for body issues, I'm not going there. I have a parastomal hernia, and honey...I belong in a circus. But that is only me! My body can be fixed as soon as come up with about £8000. Yeah, right. But...I had a general surgeon in an emergency surgery. My suggestion is NOT to do that. You need a specialist!

 

[PsychoJane]

I agree with Misty there. It worth taking the time to find the best surgeon (based on reference) to get your surgery done. I might try to put a picture of mine at some point but yeah, mine was reknown for his precise work when it comes to stoma. It's my second by this specific surgeon and both are all tiny and perfectly round. I mean, it's not a purely aesthetic matter, it's more that it can make a difference with having issues or not afterward.

 

[skippy111]

That wouldn't be a bad Idea Jane, I will post a pic of mine if you post yours ...

we can create a thread in the protected members only area?

It would give pre-op members a chance to see what they can expect and also show the different types of surgeon's styles, mine is not perfectly round but it is round and easy to clean.:strawberry:

 

[CrohnsHobo]

In the first 7 weeks I have had 1 accident. The very first time I changed the the bag and gasket at home after the surgery with the home nurse. Super embarrassing. I didn't have it totally locked into place on the bottom where the bag clicks to the gasket and I was showing my GF my fancy new supplies and gear and I dropped poop out the bottom onto the kitchen floor. Luckily my output was pretty thick at that time from the low residue diet. Last time I made that mistake.

I use a holister two piece bag that has a cloth cover so you cannot see in, and feels better against the skin with the warm weather we have, the tail where you empty folds up and seals with velcro, there is a little carbon filter at the top to vent gas.

I imagine how many supplies you get dictates how often you can change it all out. I get enough through my insurance to change everything out every other day. I usually wear them 2-3 days and then change it all out. I always take it off and then get right in the shower and let it get nice and clean and really clean the skin around it.

I don't like the way it feels after it gets about 1/3 full so if I go to the bathroom I just empty it. Every morning and every night I rinse out the inside of the bag with luke warm water and a little soap in a squeeze bottle.

I am paranoid about keeping it clean. I want it flat and clean all the time, just makes me feel more comfortable with it.