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01-13-2014, 02:48 PM   #1
lc31
 
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Stoma size?

Hi all,

Just had a few questions regarding my newly formed ileostomy. My stoma is nearly two weeks old and is still really swollen about 2.5 cm in circumference and protrudes about 4cm?I have noticed the circumfeence getting slightly smaller however that has been the only change.. I was just wondering if anyone else has had a stoma this size and if it got smaller and protruded less? Also how long it took? I have no prblem with my stoma just feel as though because it is so big it's hanging downwards and feels heavy also it is very noticeable thru clothing. Any suggestions wud be appre.ciated!
01-13-2014, 06:43 PM   #2
Nyx
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Mine didn't shrink all that much, but I have a colostomy rather than an ileostomy (not sure if that makes a difference or not). My stoma is very big - 45 mm across and sticks out about the same amount - it's like a button on my stomach...lol If I'm wearing form fitting clothing, I just put on some spanks to flatten my stomach out. I haven't had a problem with wearing it, the output still manages to come out and I've never had a leak while wearing them either. Not sure this has been helpful...hopefully someone with an ileo will be by with more info for you.
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01-13-2014, 08:11 PM   #3
PsychoJane
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From my experience, first and second stoma did shrink in circumference but not really in length. I would say it shrunk progressively over the first month, month and a half. I doubt that the length can diminished and this is based on what I understand of the stoma procedure. More or less they pull the digestive tube out then they sow a part to the fat of the abdomen and then they do the stitches that we can observe around the stoma. I then believe it would be hard for it to shorten.

If this is the length it was right after surgery, it is likely to remain that long beside a few mm less maybe. Prolapse can be part of the answer if it's longer than it originally was.

Mine is roughly 22mm diameter and maybe 10ish in length. I would dare to say it's better a bit longer than below skin level as you are likely to be able to manage the leaking more easily.
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01-14-2014, 04:44 AM   #4
lc31
 
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Thanks for the replies, I'll def give the spanx a go Cindy! As I say I have no issue with my stoma - i'm glad how much better I feel now, I'd just rather get used to it being this size than thinking it will get smaller and get upset when it doesn't lol. Thanks for the info too physcojane, I just hope the weight of it gets less noticeable maybe once things settle more and with the help of the spans!

Thank you for replies
01-14-2014, 06:24 AM   #5
2thFairy
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Mine hangs down quite a bit. The longer, the better. That means less skin irritation. Mine shrunk down slowly over about 6 weeks time from 41 cm to now 28 cm. I've had it for nearly 2 years. This is how mine looks:
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File Type: jpg bob_bag1.jpg (47.7 KB, 80 views)
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01-14-2014, 08:00 AM   #6
lc31
 
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Thank you 2thfairy! The pic helped, my stoma is very similar to ures in the way it hangs down. Can I ask if u felt as though it was slightly heavy, pulling on ure skin in the beginning?
01-14-2014, 07:37 PM   #7
2thFairy
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I don't recall it feeling heavy like you described, but I do feel it when it is active.
01-14-2014, 07:55 PM   #8
VeganOstomy
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My stoma was quite swollen post-op and was 35mm for over a month, then one day I was changing my wafer and 35mm seemed way too big, so I re-measured and it was down to 30mm and hasn't changed since. It's an ileostomy and pokes out.
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01-14-2014, 09:59 PM   #9
nogutsnoglory
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It's very normal for changes after surgery. Mine got bigger because I gained weight.

I'm jealous of all your hanging stomas. Mine likes to spurt straight up and pancake.
01-15-2014, 05:56 AM   #10
UnXmas
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Mine looked massive after the surgery, and it's still shrinking now, three months later. My last visit to the stoma nurse she re-ordered my bags cut to a smaller size yet again, which has happened every two weeks since the surgery. I think it's just about stopped shrinking now though. It's gone from the size of an apple to the size of a strawberry.

Mine doesn't hang at all. It's like a mushroom.

Last edited by UnXmas; 01-15-2014 at 06:12 AM.
01-15-2014, 11:16 AM   #11
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Thanks for all the replies it's amazing how different all our 'little friends' seem to be

:-)
01-16-2014, 04:14 PM   #12
Gav
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Great replies already, but to add my experience it took about 8 months or so for the size to stabilize. After the operation it was around 40mm and settles eventually down to around 32mm.
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01-16-2014, 04:18 PM   #13
grt73
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Hi ic31,
Mine started off at about 40mm and has gone to about 20 mm a year later. Over the year it has gone a bit smaller to a bit bigger, a bit sticky out to a bit not sticky out. A mind of its god dam own!

In answer to your question though, it will settle into a manageable routine.
01-17-2014, 08:31 AM   #14
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Thanks again for replies! Grt73 you made me lol no pre-cut bags for you I guess.
01-17-2014, 08:46 AM   #15
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Mine is a baby - 10mm now, though as I said in my post above, it's not exactly round and it's bigger at the top than at the bottom, so it's never going to be a perfect fit, but that doesn't seem to be a problem so far. I can notice the difference in size when it's active compared to when it's not active. I guess my stoma nurse ordered my bags to fit it at its smallest, as it wasn't active when she measured it.
01-17-2014, 08:55 AM   #16
lc31
 
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I am still cutting mine to the size I need. Do u think pre-cut bags are a good idea or better to measure and cut each time? Does it cause any problems when your stoma gets bigger than the hole in the bag UnXmas if you don't mind me asking? I have been sent home from hospital with numerous bags and to be honest I'm not really noticing a big difference between them all apart from not liking the seemingly useless empty extra piece of material at the top which bunches up lol?
01-17-2014, 11:02 AM   #17
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I am still cutting mine to the size I need. Do u think pre-cut bags are a good idea or better to measure and cut each time? Does it cause any problems when your stoma gets bigger than the hole in the bag UnXmas if you don't mind me asking? I have been sent home from hospital with numerous bags and to be honest I'm not really noticing a big difference between them all apart from not liking the seemingly useless empty extra piece of material at the top which bunches up lol?
I like having pre-cut bags. It doesn't seem to cause me any problems when the stoma changes size.
01-17-2014, 01:28 PM   #18
2thFairy
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I've always cut mine myself. Never really thought much about it either way.
01-17-2014, 01:31 PM   #19
nogutsnoglory
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I have an odd shape and don't want to pay someone to manually cut it for me so I do it myself.
01-17-2014, 01:44 PM   #20
VeganOstomy
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I also cut mine as my stoma isn't perfectly round. I just keep the peel-away film on the back of my wafer and use it to trace a new hole on my next wafer. Every once in a while I need to adjust the size, but it's worked well and I can't imagine using a pre-cut wafer unless I used something like eakin rings to compensate for some stoma variation.
01-17-2014, 02:35 PM   #21
grt73
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Yeah It's hit and miss but I find if I get a pre cut 20mm I can snip off a bit or use a bit more paste if its too big. Touch wood I haven't had too many disasters in the last couple of months. Off paint balling tomorrow so will see if it holds out lol
01-18-2014, 05:32 AM   #22
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I have an odd shape and don't want to pay someone to manually cut it for me so I do it myself.
Mine are pre-cut and it doesn't matter that it's an odd shape; my stoma nurse draws a template and sends it to the product suppliers and they cut it to that shape. Would you have to pay extra to get yours pre-cut? The NHS pays for everything so that's not an issue here.
01-18-2014, 05:33 AM   #23
UnXmas
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Yeah It's hit and miss but I find if I get a pre cut 20mm I can snip off a bit or use a bit more paste if its too big. Touch wood I haven't had too many disasters in the last couple of months. Off paint balling tomorrow so will see if it holds out lol
If it doesn't you can always try pretending it's brown paint.
01-20-2014, 03:58 PM   #24
grt73
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Haha,

yeah there is nothing worse lol, being out and about and faced with the question of do you try and change or try and wait till you get home or worst case end up wearing it. So far a building site portaloo has been my least favourite place to change! This should be the start of a new thread, best and worst changes amongst members!
My never leave home without it item is a pack of baby wipes, my comfort blanket hehehe

was also thinking we should have a best looking stoma award lol, could get some stick on eyes and mouth and make a little face out of it

God I think i need help
01-20-2014, 04:04 PM   #25
nogutsnoglory
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Since I have a loop stoma should I decorate it and put two googley eyes over the holes and snap a picture? That is if buddy cooperates.
01-20-2014, 04:08 PM   #26
grt73
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We should do it, I would either pee myself laughing or spray myself with something resembling poo haha
01-20-2014, 05:59 PM   #27
Nyx
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Haha,

yeah there is nothing worse lol, being out and about and faced with the question of do you try and change or try and wait till you get home or worst case end up wearing it. So far a building site portaloo has been my least favourite place to change! This should be the start of a new thread, best and worst changes amongst members!
My never leave home without it item is a pack of baby wipes, my comfort blanket hehehe

was also thinking we should have a best looking stoma award lol, could get some stick on eyes and mouth and make a little face out of it

God I think i need help
Worst place I've ever had to change was on a plane...in that tiny, tiny bathroom....where the water doesn't run on its own. Good times!
01-21-2014, 11:02 AM   #28
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Mine's so new that I haven't really taken it anywhere yet, but right after I got home from the hospital, there was a power cut. So the first time I emptied my bag on my own, outside of hospital, it was in pitchblackness, with my mum holding a torch.
01-21-2014, 11:10 AM   #29
grt73
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Going on a plane?
No way jose!!
im not that brave just yet. Being back at work as an electrician i get myself into a lot of diferent places.
My pet hate is traffic. Have been stuck in a jam before now with nowhere to go and yes is the answer I emptied into one of the nappy bag things and prayed there was no hole in it!!
When you got to go you got to go
01-21-2014, 12:11 PM   #30
nogutsnoglory
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Grt I carry a big empty pretzel container in my car in case of needing to do an emergency empty. Almost used it the other day but so far haven't had to but I like having it just in case.
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