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03-18-2012, 01:39 PM   #1
roSHEEN
 
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It's alive!

Hi there,

I've recently had an ileostomy/jujenostomy (?) following a rush into A + E with a perforated bowel. The perforated bit was quite high up and close to my stomach, ending in the result of a high output stoma and most of the time practically undigested food going in through the mouth, out through the stoma in the space of an hour. Most days the output is between 3 + 4L, although the last few days its increased to 5L -toying with the idea antibiotics have a role to play with that? Anyway, been 3 weeks since the operation and the plan is to cut me open, remove 3/4 strictures in my bowel and stitch me all back together in a couple of weeks due to the high output.
Just wanted to share my story and talk to people about it - still in hospital and plan to be here for another few weeks at least so anything to occupy my time is good. Share your story with me?

My best friend has also named my stoma fluffy the alien - because it is alive (she's witnessed it moving haa) and because it is the least fluffy thing you will ever see. Fluffy is very dear to both of us but, being a 19 year old girl) I am keen to have him back inside where he belongs.

Share your story with me? Ups, downs, laughs, frowns. I'm willing to talk about anything.

Rosheen x
03-18-2012, 01:59 PM   #2
Terriernut
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Rosheen, oh bless you! Welcome! Have you and Fluffy had a good look around our little stoma subforum. (do be careful...laughing can cause a hernia)

What antibiotics are you on? Yes, they can cause the big D. However, it sounds like your Ileo is quite high up? Can you tell us exactly what surgery you had? Ileo's always have a looser output than colostomies do.

I too had emergency surgery, as you can see by my sig line below. Alot of us here did.
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DX Crohns Feb 2011, symtoms 1997, 2009 and then WHAM! Emergency surgery for perforated sigmoid, fistula through fallopian tube, septic and near dead: Colostomy-Stan was born 22/12/10. Another parastomal hernia, his name is Ollie and he is MONSTER size!
4gm Pentasa
6MP 50mg
03-18-2012, 06:05 PM   #3
2thFairy
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The "it's alive!" part of having a stoma is just sooo cool!!! If the rest of the world could witness and FEEL peristalsis, they would be so envious of us.
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Ulcerative colitis

Total colectomy with ileostomy featuring Sideshow Bob since January 2012

"The colon seems an unlikely candidate for dramatic effect, but now and then it serves that purpose well." The Associated Press Guide to Punctuation
03-19-2012, 03:49 AM   #4
Samboi
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I was describing my Stoma as an alien just the other day!
He has a little life of his own, throbbing and pulsating. Marching to the sound of his own little drummer.
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Dx - Crohns Disease - 1992
Ileostomy - Jan 2012, Reversed Aug 2013
Pred works, all else seems to fail
Trying Vedoluzimab - running out of options
Neupogen
03-19-2012, 06:19 AM   #5
roSHEEN
 
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Haha, they totally have lives of their own - my mum helped me when I'd first had it done by saying "imagine if we were all see through", and it made me realise that colo/ileostomy patients are lucky in the sense that we get to view parts of the human body that no normal people get to see. Although half those people would find it revolting anyway.
03-19-2012, 03:24 PM   #6
shazz
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My stoma is called Ozzie the ostomy!
He is sooo funny. He was originally named as a girl but one day when he was lying flat I 'stroked' him and he rose to the occasion! Hence the boy name!
Every time i change my bag it amazes me that having him saved my life, not emergency, but it would have been if i had waited 4 more days.
I plan to have him reversed, probably next year(wont go into details, this is a happy page!) I will miss him though.
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DX: September 2011 UC now possible Crohns Feb 2012
Have tried: Pentasa(all forms),Prednisolone,Aza, 6MP, Infliximab,colifoam,metronizadole
Allergic/sensitive to: Penicillin, medical adhesives, tramadol
Am on: Citalopram,warfarin, paracetamol
Ozzie was born on 2/2/12
23/2/12 p.e in both lungs.
Now the gallbladder decides to say hello!!
03-20-2012, 09:40 AM   #7
2thFairy
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Sideshow Bob loves bananas. It's the happiest I ever see him. He's noisy and foams up at the mouth. This morning he was really putting on a good show, so of course I had to film it. I'm going to end up with a nice collection of bizarre ostomy movies by the time I have my reversal.
03-20-2012, 03:19 PM   #8
roSHEEN
 
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Can we put videos up on here 2th Fairy? I'd love to see them, it'd be such a laugh! It's pringles for fluffy - I get squeaks and all sorts of noises coming from him when I eat them. And even though rice is supposed to thicken it up, fluffy doesn't seem to like it - he throws it out pretty much exactly as it went in.
03-20-2012, 03:32 PM   #9
Terriernut
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Sideshow Bob loves bananas. It's the happiest I ever see him. He's noisy and foams up at the mouth. This morning he was really putting on a good show, so of course I had to film it. I'm going to end up with a nice collection of bizarre ostomy movies by the time I have my reversal.
Boogie time! Shake it down now ya'll!!!
03-20-2012, 04:03 PM   #10
2thFairy
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Can we put videos up on here 2th Fairy?
I have no idea.....??
03-20-2012, 04:24 PM   #11
Terriernut
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I have no idea.....??
You can post links after 100 posts as far as I know. But you might want to put a warning up for more squeemish members!
03-21-2012, 03:22 PM   #12
Terriernut
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Toothy...I have been on cold medicine for past 3 days...so I'm late with more wit and wisdom. Apologies.

But what I wanted to say about your stoma liking bananas was......

Banana SPIT!!!!!!
(Stan just had one )
03-21-2012, 03:25 PM   #13
2thFairy
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I've got some nut floaters for you, Stan!
03-21-2012, 03:30 PM   #14
Terriernut
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Runs......screaming.....from the room!!!!!! Nuts..yiiiiikkkieess scooby!!!
03-21-2012, 03:42 PM   #15
2thFairy
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Well, they're not real nuts.

Which brings me to another thing. I chickened out at the last minute, but the other day I was going to swallow some gum and see if it came out in one piece. Then I started to imagine having to pull out a string of gum that never ended and I backed out trying it.

I'm still thinking about it though.....
03-21-2012, 03:45 PM   #16
Terriernut
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Toothy, honey you need a new hobby! Have you considered knitting? LOL!
03-21-2012, 03:47 PM   #17
2thFairy
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Hahahaha!
03-21-2012, 06:13 PM   #18
ameslouise
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Well, they're not real nuts.

Which brings me to another thing. I chickened out at the last minute, but the other day I was going to swallow some gum and see if it came out in one piece. Then I started to imagine having to pull out a string of gum that never ended and I backed out trying it.

I'm still thinking about it though.....
OMG, that is so funny! But yeah, better not to try it!!!
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