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Where is your ileostomy bag thing?

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Posted 1/14/2010 1:49 PM (GMT 0)
So I'm getting mine in just over two weeks. I'm meant to be seeing my stoma nurse before hand to organise where it's going to go, haven't made the appointment yet as she's been on holidays. But the question is where does the bag generally go?

Like is it on your stomach level with your belly button? Or a tad lower? How low? Would it be covered mostly by my shirt? Or by my pants too? I generally wear belts as I'm way too skinny for most of my pants, so is my belt going to go over the bag? (I usually have them tight too, so that might cause problems, right?).

The other thing is, what do you's do when you go for a swim? I love the beach, I live near some of the best beaches in Australia! I usually go there in just board shorts and take my shirt off when I go in for a swim. But will I not be able to do that after I get the bag? What do you's do? Do you's wear rash shirts? Or is the bag low enough that your board shorts actually cover it up? Because I'm swimming, does that generally weaken the sticky stuff that glues the bag to me? If so, do you need to change it straight away (as in in the toilets on the beach?) or can you wait till you get home hours later (after the fish, chips and ice cream cones! :p ).

Thanks in advance for any help you can offer!
Posted 1/14/2010 2:58 PM (GMT 0)
Usually your ileostomy will be on the left side of your abdomen and a bit lower than your belly button. I wish that I could help you with your questions, but I'm a special case, kind of.

I had ileostomy surgery last May, but my stoma did not start producing poo, so I had emergency surgery 12 days later. When my surgeon did emergency surgery, he found that my small intestine was very tangled and inflamed. Anyhow, because of this, he sewed up my stoma and put a tube on my right side where my small intestine is pulled a bit out and the tube is attached to a velcroed leg bag. I have obstructions easily, but hopefully not for long. I've got a string of tests to do, but I see Dr. Wexner at Cleveland Clinic in March, and hopefully will schedule surgery for true ileostomy in June (1 year past emergency surgery) and hopefully time enough for my small intestine to have healed.

I can tell you that my surgeon had said that after an ileostomy, I would also be in the hospital 4-5 days, and a 6 week recovery period. Usually, if you have an ileostomy, it starts working immediately after surgery. I just happened to be unlucky and ended up staying for 52 days in the hospital. You'll do much better than that.

Your ileostomy will give you your life back. It has helped for me. I've just taken the long way around to having it.

butterfly
Posted 1/14/2010 4:31 PM (GMT 0)
it depends as to where your stoma is placed. This is very important wear your clothes you usually wear to the placement day! Dont go in with comfy sweatpants or shorts or whatever, wear your everyday clothes, the things you like to wear most! The nurse will have you sit stand lay down all kinds of stuff and mark accordingly. Wearing tight clothes isnt a problem for me i just have to empty a little more often, i never wear a belt though, i hate them, lol. But i guess you could.
As for swimming, i dont knwo what a rash shirt is, so i dont know about that.
It depends on where its placed as to whether your shorts will cover. But what you could do is if it shows a little at the top, just place a little piece of guaze and say its you got a cut. Noone woudl notice.
You dont need to change the minute you get out of the water! there is actualy a guy who is like a pro surfer who has one. It may shorten your wear time some, but in the summer i go swimming and it hasnt bothered me, and i get in our hottub.
Do be sure you take a change, you shoudl take one everywhere!
You can get these things called sureseals that will help with the weartime, and keep the wafer dry.
Posted 1/15/2010 10:08 AM (GMT 0)
Hi there,

My ileostomy is just a little lower than my belly button and on my right side. I see lasbutterfly has said they are all on the left side but mine isnt and I always thought ileostomys were on the right side. But as summerstorm said they will get u to sit, and check out clothes etc to make sure they put it in a spot which best suits your needs. I also live in Australia right beside some of the best beaches in the world on the beautiful sunshine coast yeah , I have only had my ileostomy for about 10 months and havent tried swimming yet but intend to very soon. There are lots of different products you can use to ensure your appliance stays on. Ask your stoma nurse to show you some hydroframes to put around your appliance for added security while swimming, but I don't think u need to change it immediately after swimming but I would once I got home as the sand may irritate around the base plate. Hope it all goes well please keep us posted and ask any question at all If u are in Queensland perhaps I can help out a bit more as I also go to a stoma support group and found I get lots of handy little hints from them. Take care

Doreen

Posted 1/15/2010 12:23 PM (GMT 0)
Ileostomies are usually right side (but can be found on the left in special situations) and Colostomies are usually on the lower left. Everyone has given good advice about what to wear when your stoma is being placed. Your WOCN will find the best spot on you based on your body...It is amazing how they can 'see' the spot by just watching your move!

You shouldn't have any problem swimming. Just remember that people who are more physically active have to change their appliance more frequently especially during the warming months.
Posted 1/17/2010 6:06 PM (GMT 0)
Mine is on the right, when i go swimming i wear a mini pouch and just change back to my normal one when i get home. Bev x
Posted 1/17/2010 8:25 PM (GMT 0)
My first was below the belly button on the right side. This one is on the left side and very high--above the belly button. It's annoyingly high. if I'm not wearing a bra, by boobs touch it.
Posted 1/18/2010 4:10 AM (GMT 0)
hello ozchronie,

Hope ur well. I too would like to say that i ahave an ileostomy and they are always on the right side of ur abdomen and a colostomie is on the left hand side. When you see ur stomal nurse ask him/her to mark the spot on ur abdomen where you want it not where they say as it doesn't alway's work out too well. When i had mine marked over 9 yrs ago now i went in that day to have my op and when the stoma nurse started to mark me it was to high up so i kindly asked her to check me in every possible way before i agreed to the spot. Anyway mine is on the right hand side and about 11/2 centimetre down from belly button and is about 3 centimeters across and this is a perfect spot for me as i can still wear my tight jeans and hipster's and also i used to wear long top's but now am able to wear short tops but have to empty the bag more frequently which is not a problem for me. The only thing i do hate is leakage and i have had a very large parastomal hernia which was operated on in march last year but it has since returned so due to having a big lump around the stoma again is causing leakage,not fun but is part of having the ileo!!!!! So when you see ur nurse you tell her/him excactly where you want it. Even before you go in get a marker pen and try different places on ur tummy with different clothing and it will give you an idea as to where it should be. Hope this helps u some. look after urself and after the op take it very very easy as u can do damage to it and end up back in again. Look after it as it's gonna be a part of YOU for ur life!!!!!!!! Also board shorts and surf top would be fine as ive seen other's with them and u cant even tell. good luck for ur surgery.

sincerley,

beverley. c.

 

Posted 1/18/2010 11:56 AM (GMT 0)
I'm probably one of the few on this forum who has had both a colostomy and an ileostomy.  My colostomy (decending sigmoid colostomy) was on my left side, and my ileostomy is on my right side.  It took a little while getting used to (I had my colostomy for 15 years) having a pouch on my right, though.

It's not exactly like changing brands of shampoo. It certainly was an adjustment for me!

Post Edited (vette guy) : 1/18/2010 5:02:19 AM (GMT-7)

Posted 1/25/2010 1:00 PM (GMT 0)
Hi all thanks for the help!
I went and saw the stoma nurse today and I now have a big black dot on my stomach ready for my surgery in 7 days. It's basically 2.5-3cm below and 4.5 cm to the right of the centre of my bellybutton. During my appointment she pulled out a bag and basically said she's already figured out the perfect bag for me! I was kinda shocked even though everyone on here did say they seem to have the ability to figure these things out (like a sixth sense). It was a pretty small bag compared to some of the others she had and I had the bag up against my stomach (where it would be based on my permanent market dot) and the bottom of it barely went past my belt line. Which was pretty good I thought. She said I could have it over based on my shirt or have it under my belt (ie in my pants) and it'd just decrease the carrying capacity of the bag a bit...

I don't think I'd feel comfortable walking around with out a shirt on the beach so probably will end up wearing a rash shirt. Although when you get out of the water I often find that the shirts stick to your body pretty tight, so I'm hoping it wont show through too much, I'll just have to make sure it's empty or something... :s

Oh and summerstorm a rashshirt is a shirt that bodyboarders wear to prevent themselves from getting rashes on there stomachs... although people also wear them on the beach to protect themselves from the sun... You've probably seen them before but know them by a different name: http://en.wikipedia.org/wiki/Swim_shirt
Posted 1/25/2010 3:21 PM (GMT 0)
It sounds as though she's marked it above your belt line then? Please ask her to reconsider if at all possible. If you have it above or on your belt line, your belt and pants will cause problems for you as it will mean you either will have to wear your bag over your pants (meaning you can't tuck shirts in) or else the stool won't fall into the bottom of the bag as designed because the pressure from the waist and belt will stop it if you place your pants over the bag.

It's so much easier to hide if you can contain it all beneath the belt line.
Posted 1/26/2010 1:50 AM (GMT 0)
hello ozchronie,

 

Hope ur well. I too would agree with shazo42 about the stomas being up so high on ur stomach as it will cause u terrible prob's in that spot as i know another guy that had his around that area and he has nothing but prob's with leakage,hernia ect!!!! And also the poo wont fall proberly into ur bag being so high up. If i were u and it's not to late ask for it to be re-checked as you want to have it in the best possible place and u have to be comfortable with it too. As i said in my last post you tell them where you want it as that's what i did and it's in the best possible place for me and i dont think it makes a difference wethere ur male or female???? I truly hope this works for you and ur still so young so it need's to be done right the very first time!!!! You are in my thought's and hope it all goes really well for you my friend.

 

sincerley,

 

damagedgoods.......  yeah turn yeah turn

Posted 1/26/2010 6:36 AM (GMT 0)
Ok so now I'm just even more confused! :(

I've looked at heaps of photos on the net of people with stomas and they are basically in a pretty similar spot in relation to the belly button. I have a DANSAC book (http://www.dansac.com.au/) about stoma care and the photo's in that have people with the stoma in a pretty similar spot too!

The way I see it I can't have it below my beltline. My belt line is that low that there's no where to really have it below the belt (don't get me wrong I don't wear my pants below my knees :p ). When you stand up you have your hip bone then there is a gap and then another bone sticking out, i have my belt just above that bone. To put it a different way, the bone is a part of my leg which sticks out the furthest, when you walk you can actually feel this bone move (the outermost part of the thigh bone). Does that make sense? Should I upload a photo? but yer, thats where my belt is.


But yer, I'm pretty sure I can't have it below my belt-line as my belt-line is way too low! I COULD wear my pants higher to give myself a higher belt line) which would then allow me to have it below the belt line, but considering current fashion trends that would really result in me becoming more of a social outcast then I would by just having a bag :p

Out of curiosity, Do most people here have the stoma below or above the belt line? And where are everyones belt lines?

I actually don't usually tuck my shirt in anyway, only if I'm going somewhere really formal (wedding etc) which is hardly ever, so my shirts will be left out. The nurse did say it can go under my belt which will cut off that section of the bag but the impact will be minimal as it was only a small section that would be cut off.

Another question, damagedgoods41 you mentioned the poo wont fall properly if its that high up, why is that? I didn't think height would make a difference? And when you said before that your stoma is "about 11/2 centimetre down from belly button", I took that as 1.5cm (one and a half centimetres) below your belly button, while mine is going 2.5-3cm below my bellybutton, making yours higher and mine lower... hence my confusion when you say mine is too high...


Wow I'm so confused right now!! confused x a lot!
Posted 1/26/2010 7:09 AM (GMT 0)
The reason the poo wont fall properly is because it will hit your pants and kind of jam up like.

I wear regular lowrise pants, they sit pretty much on my stoma, or a little higher.

Your pants being on it wont really make that big of a difference, not as much as them cutting it off mid stream
Like my pants go right below the top of the bag, so the very top sticks out. I just tape thatto my skin so it doesnt flop over. Then the poo can go on down.
With men the stoma is placed higher than with women, or at least from what i have read on here. Im not sure its supposed to be that way. I htink what you need to do, is have the ET give you a bag, attach it where she has you marked, fill it with applesauce and try it. See how it works!
you dont want one in the wrong place, that will make it really hard.
Posted 1/26/2010 7:33 AM (GMT 0)
Ahh ok, so it basically wont be able to get to the bottom of the bag, I think this is ok, I tried walking around with the bag she showed me on and only a small part of the bag was covered by my belt...

So with guys the stoma is often placed higher up, so its not that unusual to have it above the belt line then? And your personal opinion is that it doesn't really matter that much if it is above the belt line?

Hmm, I wonder, given that my belt-line is level with the outermost part of my thigh bone, I doubt it's even possible to actually have a stoma level with or below my belt line :p

yep, I'm convinced, if I had my stoma level with or lower then my belt line the bag'd be waaay too close to my groin, and that'd be even weirder during sex! Even if it was a pretty small bag....

<Insert Happier Emoticon Here :p >
Posted 1/26/2010 7:45 AM (GMT 0)
hello ozchronie im sorry if im confusing you so much?? You mentioned about ur hip bone which is what sticks out when ur lying flat and or walking if ur slimmer,as ur hip bone will protrude. Anyway what im trying to say is the best place to have ur stoma is about the same spot as ur hip bone and about 3cms going in towards ur belly button, but about 1.5 to 2cms down from ur button. Basically you need just the very top of ur bag to show above ur belt line and that way the poo will fall into ur bag so much better. If it is high up and sit's way above ur belt line ur going to have alot of trouble even having the bag inside ur jeans ect!!! Then you will have to wear ur bag stting out of ur clothing and that will be very hard for you. It's so bloody hard to explaine but im trying my hardest for you ok. Ask ur stomal thearapist to re-check the spot and make sure you put a bag at the spot she has marked then put some jeans on or whatever you would normally wear and all you should see at the belt line is just the very top of the bag,as in just the top filter part and if it's alot higher it will be very hard to manage. It also cant be to close to ur belly button as this can also cause poor adhesion on ur abdomen which is also very important. I also agree with the other ostomate that said put it at ur abdomen and fill it with apple sauce or something heavy and this will give you a very good idea about how it's going to work for you. I know we are all different shapes and sizes but you really do need it to be under ur belt line,basically you shouldn't even be able t see ur bag at all. gosh i hope this help's you as i hope they put it in the right spot. Also ask ur stomal thearapist if she can show you other bag's,baseplates ect!!!! Even try HOLLISTER PRODUCTS as they are the most popular from what ive been told. I have been using them for a couple of years now and my leakage is nearly nil and other people that i know that have then also use HOLLISTER 2 PEICE as they last much longer than the one piece. Just try,try and keep trying and go with what ur comfortable with and not ur stomas nurse s they are not alway's correct as it's on our body not there's.

All i can say is good luck and if you ever need to chat just call on me my friend. Look after YOU only!!!!!  Best Wishes for ur surgery and dont over do thing's after it ok.

sincerley,

Beverley.c. 

((((((((((((((((((((((((((((((hugs to you)))))))))))))))))))))))))))))))))

Posted 1/26/2010 9:29 AM (GMT 0)
OzChronie, have a look at the pic at the very bottom of www.ostomates.org/ostomies.html It's a very crude drawing but it illustrates what we're trying to say (hopefully!)
Posted 1/26/2010 9:45 AM (GMT 0)
hey Ozchronie i also wanted to say that the bag will usually sit near ur groin area anyway if they put it in the correct place, so mo matter what it will hang loose ok. Sorry not being to rude i hope?? haha There are also mini bags that you can use when being intimate so dont let that bother you ok. Also the last thing you will be thinking about is having sex for some time im afraid!!!!!!!!!! :) :) see ya!!!!!!!!! Take care......
sincerley,

beverley.c.
Posted 1/26/2010 1:17 PM (GMT 0)
Here's a post on another board by someone who has the problem of a stoma overlapping the belt line:

"my stoma is a bit above my waist line, and if i wear anything across the stoma, i also have the problem that stool won't drop into the bag, and pancakes all up around my stoma. i wore jeans today for the first time, but wore the top snap undone, the waist band folded under, and a shirt not tucked in, covering it all. i am hating the clothing problem, with my stoma so high."
Posted 1/26/2010 4:50 PM (GMT 0)
I tuck my bag up undermy underwear so it doesnt hang down my leg. i cant stand it flopping like that.
And i have a belly band thing i put aroundmy waist to hold it up for sex. That way it wont be in the way there either.

If you tried it with pants on though and it didnt bother you, then i guess its wher eyou want it,but i would still want to make sure mine was below my belly button.
Posted 1/27/2010 6:51 AM (GMT 0)
Heeeeyyyyy!

It's ok about me being confused, it is hard to explain some things over the net... and no you're not being rude :p I really do appreciate all the comments as you's are all on here in your own time helping me out! Which I truly truly do appreciate! I just feel bad bothering everyone with these questions!

In short: I'm going in to see my Stoma Therapy Nurse on Friday again to rediscuss the stoma location and everything else... I basically just don't want to go in to the surgery doubting my decision so want to make sure I make the right decision. I spoke to her (the nurse) on the phone and she said that she doesn't generally have the stoma under the belt line due to rubbing, and based on where I have it located, while she can't say it won't decrease the bags capacity, she is thinking it will be ok. She said another alternative would be for me to have it above the belly button, that way it wouldn't be anywhere near my belt. I think that's way too high and probably would feel more (socially) uncomfortable with it there then if it was below my bellybutton. But anyway, she's guna discuss it with me on Friday.

____


So damagedgoods, you said that "the best place to have ur stoma is about the same spot as ur hip bone and about 3cms going in towards ur belly button, but about 1.5 to 2cms down from ur button. Basically you need just the very top of ur bag to show above ur belt line and that way the poo will fall into ur bag so much better."


Maybe I have a weird shaped body or something (disproportionate? :p ), but my stoma (or should I say black permanent marker dot) is basically inline with my hipbone. If I drew a line from the outermost part of my hipbones across my stomach it would go through the top part of my black dot. But the problem as you said is the whole being too high in comparison to where my belt is. Is it possible that my stoma is in the 'normal' spot but its just that I wear my belt way too low??


Thanks for the drawing Shaz, it actually did help explain what you's were saying! Was the small dot on the stomach the belly button? As in to show the stoma and bag in relation to the belly button?

NASCARon, does the bottom of your bag go near your belt line? If so do you have any problems with it being there too? (I was assuming it must be near the belt line or end before the belt line as it's only 1.3cm (ish) below your bellybutton (compared to my 2.5-3cm below my bellybutton).

I wonder how low the surgeon can physically put the stoma… hmmm
Posted 1/27/2010 8:51 AM (GMT 0)
lol, yep the small dot is the belly button - I'm not taking up drawing and art as a career any time soon rofl
Posted 1/27/2010 9:36 PM (GMT 0)
Just a thought but why don't you try wearing a pouch for a few days on the spot that your nurse has marked for you and see how it works. Try wearing your normal clothes and add some weight in the pouch for a 'feel" of how things will be,remembering too that it will feel strange at first but you will get use to it in time. That way if you like the spot great, if not move the pouch to where you think it might feel more comfortable at for you. Like I said just a thought.
Posted 2/2/2010 8:29 PM (GMT 0)
My stoma is parallel with my belly button on my right side. I wear dress pants with a belt every day, and don't have a problem at all. I put the bag between my underwear and my pants so it isn't pressed against my thigh, and I don't notice it until it fills up. My belt line is also pretty low because I am skinny, but other than adjusting its position every now and then, I don't have any problems with it.

Frank

Nashville, TN
Posted 2/3/2010 3:42 AM (GMT 0)
My ileo is on my Right side a little below my belly button. I have found that I worried far too much about it until I got used to it and now I don't think about it all the time whew....finally.
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