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10-04-2011, 02:20 PM   #1
hopeful
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Ileostomates - Stoma Length?

I am trying to figure out how much I will gain from stoma revision surgery. So, a few questions for fellow ileostomates:

How far out does your stoma extend (approximately)?

How often do you need to change your appliance? (and which appliance do you use)

Thanks everyone

Hopeful

Last edited by hopeful; 10-04-2011 at 07:29 PM. Reason: Additional question
10-04-2011, 02:57 PM   #2
Terriernut
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I'm lucky...I have a proper peni!!! (sorry ya'll) Mine is about an inch and a half long. (unless he hides when he gets cold...yeah...like a boy!) And Stan has a proper dripper on him...yeah, like a teapot.

I change every 4 days usually. Could go more, but why chance it.
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10-04-2011, 02:58 PM   #3
ameslouise
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Hi Hopeful - My stoma barely sticks out - maybe 1/4" at max. I think the temp stoma I had years ago stuck out more. I use a convex wafer to push it out a little more and make sure the output doesn't run under the wafer. I change my appliance every 3-4 days.

Good luck! - Amy
10-04-2011, 05:40 PM   #4
Nyx
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I don't have an ileostomy, but my colostomy sticks out about an inch and a half...maybe two inches. And I change my appliance every 6 - 8 days.
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10-04-2011, 07:02 PM   #5
littlefreebird
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my ileostomy is about 3cm long and i change my bag every 2-3 days but could leave it longer if i really wanted to.
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10-04-2011, 07:26 PM   #6
glum chump
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Mine's a teensy bit bigger than an inch and is oval and leans to the right. I change my appliance every 4 days, but know I can leave it for about 6 days without a problem.

Kismet
10-04-2011, 07:30 PM   #7
hopeful
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Thanks Kismet. Which appliance do you use?
10-04-2011, 07:43 PM   #8
glum chump
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I'm using the Coloplast SenSura Flex 2-piece and loving it! I started off on the Hollister 2-piece, but I still have an open wound from my incision site and I needed to cut some of the appliance tape around the wound area. Sometimes I cut too much and it resulted in leaks, so the ET nurse switched me to Coloplast.

I wish you lots of wellness with your upcoming surgery!

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10-05-2011, 08:39 AM   #9
LOSTnut
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Hi Hopeful - My stoma barely sticks out - maybe 1/4" at max. I use a convex wafer to push it out a little more and make sure the output doesn't run under the wafer. I change my appliance every 3-4 days.
Ditto for me.
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10-10-2011, 08:55 AM   #10
robbo87
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I'd say mine sticks out about an inch or so. I use the Dansac Bags with a seal and i usually change every 3 days. Although when i've been lazy on the odd occasion they have lasted 5 days but I certainly wouldn't leave it any longer than that. I do change more often if say ive been for a swim or something though.
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10-10-2011, 09:38 AM   #11
vonfunk
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mine's about an inch and a half two inches. so far My preferred brand is Hollister, I generally last about a week with the appliance.
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10-10-2011, 11:48 AM   #12
Rob.G
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Mine sticks out about an inch. I use the Hollister Conform 2 Two-Piece with FlexWear Floating Flange, change it every 4 days in general but will go a day longer if I need to for any reason. Though with a Fixed Flange I was able to go a whole week (changed it every Saturday)
10-10-2011, 12:30 PM   #13
KazT17
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Does anyone else change their bag every day? I was told to do that and so I do. I am terrified of missing a small leak and causing a problem with my skin. I am amazed that you all leave it about 4 days before changing.

Thanks,

Kaz xxx
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10-10-2011, 12:40 PM   #14
Terriernut
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Kaz, it depends on what you are using. If you are using a one piece, yes every day or every other day isnt unusual. If you are using a two piece system, you just change the bag and not the actual appliance.
HTH.
10-10-2011, 12:51 PM   #15
Rob.G
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Does anyone else change their bag every day? I was told to do that and so I do. I am terrified of missing a small leak and causing a problem with my skin. I am amazed that you all leave it about 4 days before changing.

Thanks,

Kaz xxx
It depends on the Bags/Wafers you use, what you get given and shown in Hospital are Bog Standard Bags designed for 1 - 2 days wear time but companies tend to do an 'Extended Wear' range, for example the Hollister ones I use are called 'FlexWear'.

This is their little description of it: "FlexWear is a cross-linked hydrocolloid skin barrier that provides aggressive adherence and is designed for more than one day weartime. It is more resistant to breakdown than SoftFlex. FlexWear is a good general choice of skin barrier for colostomies and ileostomies where greater than one day wear time is desired."
10-10-2011, 12:58 PM   #16
KazT17
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Thanks for the information guys. I use the chloroplast sensura, I haven't tried anything else. Do you prefer the 2 piece?

Kaz xx
10-10-2011, 01:02 PM   #17
Terriernut
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Coloplast Sensura Flex two piece system for me. Although I may change again.

Two piece suits my lifestyle perfectly. I fit my bag to what I need....day or night...or tiny for a night out. And I dont have to change my appliance.
LOVE THAT!
10-10-2011, 01:05 PM   #18
KazT17
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I had no idea I could do that thanks. Lol at my spelling - unless mine are green !!!

Kaz xxx
10-10-2011, 01:22 PM   #19
KazT17
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Just had a look at the 2 piece on-line Misty, how do you get the baseplate to the right size for your stoma? My stoma is not round and I usually cut the bags myself.

Thanks,

Kaz xxx
10-10-2011, 01:34 PM   #20
Terriernut
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I order mine precut to 35mm. As stomas still have changes in sizes as I go thru the day, or flare as I am now, I use the salts seals. It prevents leaking and makes a nice little turtleneck for Stan.

Most suppliers will precut to certain sizes and you can make adjustments as needed.
10-10-2011, 01:48 PM   #21
KazT17
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Thank you. I have just ordered some samples xxx
10-10-2011, 01:53 PM   #22
Terriernut
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What did you order?? Oh do tell...we like samples!
10-10-2011, 02:28 PM   #23
hopeful
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Just had a look at the 2 piece on-line Misty, how do you get the baseplate to the right size for your stoma? My stoma is not round and I usually cut the bags myself.

Thanks,

Kaz xxx

Kaz,

My stoma is not perfectly round either, it has some extensions here and there. I now use the Convatec Moldable - you roll it back, put it on, and it molds to the shape of your stoma. No more cutting needed.
10-10-2011, 02:38 PM   #24
KazT17
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Lol. I ordered the coloplast sensura flex baseplate and a couple of different size bags. I then watched a Coloplast user guide, which I didn't know existed, and learned how to use the 1 piece bags I have already and the 2 piece ones. I didn't even know how to cut the bag correctly or use the filters! My stoma nurse made me feel like a nusiance and I have only seen her a couple of times, so I had no-one to ask. She said she didn't have to see me on a regular basis and to only contact her if there is a problem. Is that the case for you guys too?

Those moldable sound great too, thanks Hopeful.

Kaz xxx
10-10-2011, 02:45 PM   #25
Terriernut
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The suppliers and manufacurers are a GREAT help if you dont have a stoma nurse that is helpful.

You can ring ALL of them...tell them what your issues are...and they will send you samples. Tell them you need a good supply to try...because you are new, and have no good stoma nurse. Most of the folks on the phone lines at the manufactures are ostmates themselves! You can give them a good whinge and they are very helpful.

We arent stoma nurses but we try to help too.
10-10-2011, 02:58 PM   #26
steph38
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I use the Hollister 2 piece and I change it every 3 days, but wash it out twice a day!!!!
10-10-2011, 03:01 PM   #27
steph38
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I use the Hollister 2 piece and I change it every 3 days, but wash the bag out every morning before work and every night before I go to bed. Does your look like you have a bubble in your clothes?
10-11-2011, 02:06 AM   #28
Gav
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My stoma length is around 1-1.5 inches depending on its mood. I use Coloplast Assura convex bags. I change every morning for work, that's mainly so I get the effect of a fresh filter at work.

At the weekend I tend to let it go the whole weekend and change again for work on Monday.
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10-11-2011, 05:14 AM   #29
robbo87
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Lol. I ordered the coloplast sensura flex baseplate and a couple of different size bags. I then watched a Coloplast user guide, which I didn't know existed, and learned how to use the 1 piece bags I have already and the 2 piece ones. I didn't even know how to cut the bag correctly or use the filters! My stoma nurse made me feel like a nusiance and I have only seen her a couple of times, so I had no-one to ask. She said she didn't have to see me on a regular basis and to only contact her if there is a problem. Is that the case for you guys too?

Those moldable sound great too, thanks Hopeful.

Kaz xxx
Just out of interest can i ask you which hospital your stoma nurse is based? i currently see the ones in salford but when i first came home It was the nurse from wigan who made home visits and i thought she was horrible. Like you say i was made to feel like a nuisance and she contradicted everything id ever been told. I rang them and told them not to bother coming out anymore. However in contrast the stoma care team at salford are absolutely amazing and more than helpful.
10-11-2011, 08:09 AM   #30
LOSTnut
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I use the Convatec Moldable.

Never had a stoma nurse and muddled through it all by myself which was pretty trying at times. Finally managed with the help of the Stoma Gang here on the forum.

PS to ALL: Thanks again to everybody who helped me get my life back and not feeling like a complete moron
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