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

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.

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

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.

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.

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

Thanks Kismet. Which appliance do you use?

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!

Kismet

ameslouise said:

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.

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Ditto for me.

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.

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.

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)

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

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.

KazT17 said:

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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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."

Thanks for the information guys. I use the chloroplast sensura, I haven't tried anything else. Do you prefer the 2 piece?

Kaz xx

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!

I had no idea I could do that thanks. Lol at my spelling - unless mine are green !!!

Kaz xxx

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

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.

Thank you. I have just ordered some samples xxx

What did you order?? Oh do tell...we like samples!

KazT17 said:

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

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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.

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

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.

I use the Hollister 2 piece and I change it every 3 days, but wash it out twice a day!!!!

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?

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.

KazT17 said:

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

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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.

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

Stoma's - A Man Is Not An Island

What a diverse bunch of answers but I am glad I stopped by to read them. My stoma is about an inch max to almost disappearing at times. I wear mine for a week; it’s a two piece snap together system from ConvaTec. Once it's in place, it usually stays put unless I do a whole bunch of bending and flexing then I usually change it before problems arise. I am sitting here in Maine reading about some of the folks changing and washing these things out sometimes every day and wondering if your stoma’s act the same way mine does? Maybe I am built different but changing mine is like watching a Key stone cops comedy movie or maybe Lucile Ball working on a conveyor belt trying to box cakes up before they fall on the floor.. . Old faithful has a mind of its own. Sometimes it begins to flow at about the time I have just cleaned my skin and dried it well so the adhesive will bond properly. I have a wonderful sense of humor but at times it gets frustrating. The problem being if output leaks down into the seal area where the two sections snap together, it acts like a wick and can’t be cleaned and has to be removed, both pieces. I have to start over again and it’s painful. I have tried to explain it to my wife but she always gets this puzzled look on face. ; ) My skin is so sensitive that unless I have worn it at least 7 days, it literally rips the top layer of skin off, very painful so you can see my dilemma. If (it) behaves itself during the change, all is well for 7 days. I guess from your different descriptions, there are many different types available. I like the system I have but hate the process when things don't go well. I have tried to figure out what time of day my body is less likely to want to start ejecting thus increasing the odds it will be a quick, clean change. Thanks for all the posts. .; ) Take care. Bob E from the foothills of Maine PS: I am really glad this forum is here, I think we all have something to add to the group.

Bob,

You may want to try Hollister Medical Adhesive remover - its a spray, and you spray it between the flange and the skin as you are removing, and it melts the glue away. You should avoid ripping the skin if you used that.

Some say that putting an ice block (covered with a tissue) on the stoma for a few seconds, shocks it into silence for duration of changing the flange. Am trying that now.

I've not tried ice, but banana works for me. Sometimes.

Mostly Stan is so happy it's like Clevon Little in Blazing Saddles...."Excuse me while I whip this out" and I scream. :rof:

I would recommend the adhesive remover, as well. I get them as 'wipes' and haven't used the spray, but I use a product called 'Remove' and it makes taking the appliance off easy-peasy.

I used to use the 2-piece Hollister, and had no complaints, but then tried the Coloplast 2-piece and prefer it because it takes less time to put on then the Hollister. With the Hollister, I was always having to start over again because crap would leak before I got the flange on. But with the quickness of getting the Coloplast on, I've been able to get everything on in one try.

Kismet

Thank you for all your suggestions, removing a fresh appliance has always been so painful. I am very much a creature of habit, sometimes I am my own worst enemy. My wife says I am predictable, I think she's right. I will check into these suggestions and most appliance makers offer a few free samples so that’s a plus and I didn't even consider the adhesive removal route. All of your answers are a real help... Bob from the foothills of Maine. Take care.

Shocked by the ice ; )

hopeful said:

Bob,

You may want to try Hollister Medical Adhesive remover - its a spray, and you spray it between the flange and the skin as you are removing, and it melts the glue away. You should avoid ripping the skin if you used that.

Some say that putting an ice block (covered with a tissue) on the stoma for a few seconds, shocks it into silence for duration of changing the flange. Am trying that now.

Click to expand...

I love this idea, I am a science person and this is just the type of thing I am prone to trying. If this works for me, I will share my experience with you. I guess its the same reaction one would expect if someone drops ice down your back. ha ha cute Thanks - Bob E from the foothills of Maine...

Stoma's - A Man Is Not An Island

hopeful said:

Bob,

You may want to try Hollister Medical Adhesive remover - its a spray, and you spray it between the flange and the skin as you are removing, and it melts the glue away. You should avoid ripping the skin if you used that.

Some say that putting an ice block (covered with a tissue) on the stoma for a few seconds, shocks it into silence for duration of changing the flange. Am trying that now.

Click to expand...

I love the ice idea, I am a science person and this is just the type of thing I am prone to trying. If this works for me, I will share my experience with you. I guess its the same reaction one would expect if someone drops ice down your back. Ha ha cute. Thanks - Bob E from the foothills of Maine...

Ice!?

Stan has disappeared into my nether regions!!! :ywow:

He said he wont come out til I promise no more ice. :frown:

He's warming himself in front of the fire now.

(yeah, I had to try it)
Misty

Terriernut said:

Stan has disappeared into my nether regions!!! :ywow:

He said he wont come out til I promise no more ice. :frown:

He's warming himself in front of the fire now.

(yeah, I had to try it)
Misty

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ha ha thats cute. I am pretty sure he'll be back but just in case, let me know. I have about 5 days left till I try it. ; )

Oscar would be pissy if I put ice on his head...lol

Nyx said:

Oscar would be pissy if I put ice on his head...lol

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Yeah, I'm pretty sure Bilbo wouldn't be too psyched about it either!!

No Ice But Very Cold Water

lostpanda said:

ha ha thats cute. I am pretty sure he'll be back but just in case, let me know. I have about 5 days left till I try it. ; )

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Well I had to try shocking (It) to see if (It) would remain quiet while I went about the process of cleaning, drying and applying a new device before old faithful started to erupt. The dumb thing really is dumb, it only made the problem worse. I have not given up, there has to be a way. ha ha.

Does IT ever have quiet moments, your stoma? Like very first thing in the morning? What a little bugger he seems to be!

if I don't eat or drink in the am, it is usually quiet about half an hour after getting up (intitially it is still emptying from the night).

hopeful said:

if I don't eat or drink in the am, it is usually quiet about half an hour after getting up (intitially it is still emptying from the night).

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I'd use those Golden Moments of 'silence' then. Stan can be perfectly quiet until I try to change. He does it just to piss me off I think! I must say his aim is improving as well. Sometimes he even hits the taps! (the little b£$tard)

I think it may have quiet times and I am usually very self-aware but I guess I need to plan better. I think right after breakfast is a quiet time and before my morning Coffee takes affect. Thank you for the suggestions. Next time around, I will try the morning. I usually am half asleep so the night before I will lay out my stuff and that should help a little. Isn't life a gas? Really, thank you guys for the suggestions, its never too late to teach an old dog new tricks... ; ) Bob E from the Foot Hills Of Maine. PS We have already had our first snow storm and it's not even winter yet... Take care Guys.

Dont forget the toothpicks to hold your eyeballs open! Comes in handy.

Glad u mentioned that, add it to my list Thxs

Terriernut said:

Dont forget the toothpicks to hold your eyeballs open! Comes in handy.

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1. Tooth picks. Ok I am all set...