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Crohn's Disease Forum » General IBD Discussion » How much cutting before ostomy bag?


 
05-18-2012, 07:41 AM   #1
nogutsnoglory
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How much cutting before ostomy bag?

I had a foot of colon and foot of small intestine removed already. How much needs to be cut before a bag is required?
05-18-2012, 02:46 PM   #2
Terriernut
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Aww hun. Its not always the amount that need to be cut before the need for an ostomy. Usually an ostomy is because there needs to be complete rest for the bowel. Or that the entire bowel is so compromised that nothing further can be done.

Me...just my sigmoid gone for the time being. But a reversal is possible.
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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!
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05-18-2012, 08:02 PM   #3
nogutsnoglory
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For the permanent ones I thought after a certain amount of intestine loss you need one.
05-19-2012, 12:21 AM   #4
Terriernut
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You will need one after alot of loss of intestine yes, because you would be completely incontinent. Lets hope you have plenty left!
05-19-2012, 01:51 AM   #5
Samboi
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I haven't lost a millimetre and I have a temp bag.
Disease effected bum needed a rest to heal.
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05-19-2012, 06:12 AM   #6
Irene3
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I had 70cm of bowel recsected, had a temporary illeoostomy, then reversal. I have 10cm of stricturing at the moment, but Iv just started humira, and with 6mp, hopefully I won't need a bowel recsection, for the same worries as your having. I think too... If 70cm already, what if 1 or 2 more resections, and I have to have a permanent bag. I hated having it temporarily, as is I'm self conscious of my gut, but with a bag so much more so. The farting sounds, ahhhhhh horrid!!!!
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Diagnosed crohns disease 6 yrs/candida
Temorary illeostomy, 70+cm bowel recsection, ulcerated bowel...currently stricturing.
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05-20-2012, 01:52 AM   #7
FruitLoop
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i have about 200cm gone now and they've never said id need another bag due to not enough bowel ?

I had a temp ileostomy after a re-section split and they needed my bowel to rest but that was reversed.

You can get short gut sydrome from having a lot removed but that means infusions of missing nutrients rather than an ostomy.
05-20-2012, 04:16 AM   #8
Irene3
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Wow...200 fruitloop! Do you have constant diarrhea, even when there's no crohns pain? I thought with 70,'cm, at best, I'll go twice a day, just because of less small and large bowel...since humira, Iv had 2 days of only 2 toilet trips. But mostly IRS between 5-15. Around 7-9 lately, even if no crohns pain. Do you have the same... Or more?
05-20-2012, 06:59 AM   #9
FruitLoop
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I do have a lot of D since my last op - the surgeon did say i was probably never going to have solid output and i would have to go more than the average person but he reckoned about 4 times a day.

At christmas i was up to about 30 - i was up through the night.

Currently its about 8-10 on a good day and 20 on a bad day - however i am in active flare.

I've had 4 surgeries - 1st resection was 20cm, 2nd was 20cm, 3rd was emergency ileostomy and about 50-60cm was taken - last one had to have 1 metre taken as i had 2 fistulasso they had to remove a fair chunk.

There's lots left yet though
05-20-2012, 07:28 AM   #10
nogutsnoglory
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Wow that's a lot removed. Do you need vitamin shots or do you still absorb food?
05-20-2012, 09:00 AM   #11
Misty-Eyed
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I think it's more to do with what state your rectum and anus are in. My rectum was especially bad so there was no point in trying to preserve it. That's why I have a permanent bag.
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05-20-2012, 09:43 AM   #12
nogutsnoglory
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My anus is fine it's the loss of colon and small intestine that scares me.
12-01-2012, 04:01 PM   #13
vickie
 
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hi my name is vickie i have just joined.i have crohns had it 11 years.i had. 30% of my large bowel removed in 2001 then 10 cm removed in 2004. and always bn on all diffent med tried them all.i jad a colonoscopy last tuesday and i was told i now nd to have 20 cm taken out.they want to do it urgent so am waiting for appointment to go in.unless my pain gets worse then i have to go in asap n they wil operate then x i am scared this time as i now have 2 kids and a gud job and have bn trying to work out how much bowel i wil have left but cant duuurrrr lol xxx i am fed up of being in pain.i had the choice of injections or op.so i said op as the injections havent worked in the past n i just want to b out of pain
12-01-2012, 04:25 PM   #14
katiesue1506
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I only had 12ish cm removed and have to have the bag for bowel rest.

I think it matter more on WHERE you have bowel taken out versus how much. Of course at some point if you have a lot taken out, it'll have to be taken from the important places.

Before my ostomy I had a surgery consult for a different reason and the surgeon was telling me that if they had to take from certain places I would be left with a bag.
12-02-2012, 09:20 AM   #15
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hi thank u for getting bk to me xx. i look after a man who has a bag for life and he talks bout how it has changed his life.ect xx i wudnt mind one for a break but not yet forever.but then again if i have to for my health then i wud
12-02-2012, 09:43 AM   #16
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i wudnt wish crohns on anyone.i have messed myself on public buses and talking my kids to school x and after 11 years its stil not 100% under control.wil never b.but sud b easyier by now x
12-02-2012, 02:14 PM   #17
Absentminded
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I got my bag last wednesday. It was my first surgery and I had 23 cm of ileum and 8cm of colon, plus my appendix removed. I have a temporary bag because they found a fistula into my rectum (to add to the one going into my bladder and the two other joining loops of bowel) and wanted to let things rest. They've said that I should be about to have my stoma reversed in mid February!
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Diagnosed: July 2009

Resection and removal of Enterocutaneous Fistula: Jan 2014
Pelvic infection Drainage: April 2013
Ileostomy reversal: February 2013
Ileocecal resection and temp. ileostomy (Say hello to Norman!): Nov 2012
Current Medication: NONE!

Past medications: Humira, Infliximab, Azapthioprine, Asacol, Budesonide, Prednisolone, Flagyl, Cipro, Cholestyramine (Questran), Fortisips.
12-02-2012, 06:13 PM   #18
vickie
 
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aaahhh huni i hope it helps i really do xxx just wish they cud release wind not so loud. xx
12-02-2012, 08:21 PM   #19
2thFairy
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Vickie, we were discussing stoma noises yesterday in the stoma subforum, as Susan2 had hers singing to her. I suggested that we all get together for a meal and see if we could record some Christmas tunes. Hahaha!
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12-03-2012, 02:36 AM   #20
vickie
 
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lol xxx
12-03-2012, 02:41 AM   #21
vickie
 
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how are u with your stoma?? xx i just want to b out of pain.am sick of my hubby n kids seeing me in pain.and doesnt it p##s you off when people think you just have a bit of period pain.and dont understandxx
12-03-2012, 08:06 AM   #22
2thFairy
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I am doing VERY good with my stoma.....so much so that I have been given the go ahead by my colorectal surgeon to have a reversal, but I have chosen to keep the stoma.
12-03-2012, 08:46 AM   #23
Susan2
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Vickie, we were discussing stoma noises yesterday in the stoma subforum, as Susan2 had hers singing to her. I suggested that we all get together for a meal and see if we could record some Christmas tunes. Hahaha!
Perhaps we could do a YouTube like this but of singing stomas.
12-03-2012, 08:55 AM   #24
2thFairy
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Hahaha!! Indeed!
12-03-2012, 10:16 AM   #25
vickie
 
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wow thats great if u r keeping it.and out of pain xxx
12-03-2012, 12:08 PM   #26
NicoleKS
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I had 2 feet of small bowel removed during my resection and I haven't needed an ostomy or anything. But I may be on the verge of short bowel syndrome if not already....
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Symptoms of Crohn's: 17 years
Officially Diagnosed: July 8 2010 with Crohn's of the ileum.
Current IBD meds: 12.5mg Methotrexate weekly, Lomotil, Baclofen and Roxicodone as needed.
Failed IBD meds: Asacol, Entocort, Prednisone, 6MP, Humira, Remicade, Azathioprine, Librax.

Symptoms are still uncontrolled.
Fistula developed January 2011.
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My poor gut and my poor butt!

12-03-2012, 06:04 PM   #27
vickie
 
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i can see u are on that m6 i was on that 50mg every other day omg never bn so sick it was horried.then they wanted me to go injections.but i said no i just want it out.and live a nomal life well as normal can be xx i have had methertrxaid injections for cancer people.i had it every week n it didnt work just made me sick.so i have lost all hope in medication.i was told i had crohns when my daughter was 1.my husband left me as cudnt deal with it.i am happy marrried and we have a boy.yet the whole time i was pregnate i cud eat anything n everything.was on no meds.the hotter the better i cudnt belive it.then after he was born bk on same meds and more.sum days i just wish someone to have my pain for a day n b told to get on with it.like i have had to.if people cud c crohns like a broken leg or arm maybe they wud understand more xx sorry for the moan everyone.just told my boss i nd an op n got asked when wil i b bki havent even got a date yet.i was told urgent as i was crying in so much pain when he did the colonoscopy.i hate that bloody thing aswell lol xxx i wil b in a better mood tomorrow lol.and doc say dont stress it doest help lol xxx
12-03-2012, 06:15 PM   #28
Scaryman
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Absent I hope you feel better with the temp bag. I really hope it works out in the long run. Send some healing prayers your way!
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12-03-2012, 06:20 PM   #29
Absentminded
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Ah thank you! I'm really hoping it does. I was on a liquid diet for the 10 weeks prior to my surgery, do it can't get NYC worse!!
I feel better already, I haven't taken any painkillers since 5 days after my surgery.
12-03-2012, 06:26 PM   #30
Hobbes650
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Wow that's a lot removed. Do you need vitamin shots or do you still absorb food?

Got me wondering- I think there is a condition called short bowel syndrome, or something like that which refers to having a short intestinal tract. But I do not know how much/little intestine one has to have left before getting called that.

I had my entire large bowel removed (colon + rectum), as well as tissue from 2 j-pouches and one Koch pouch. Not sure, but I believe it takes 2 feet (60cm) of tissue to make the j-pouch, so that puts me at a loss of 180cm or 6ft, and that may be on the low side. I've never had any vitamin shots nor do I worry about my food intake. In fact, this year I've been taking Prednisone to knock out my current flare up (successfully) and I've gained 30 pounds!
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Ulcerative Colitis 1986
Complete Proctocolectomy with j-pouch 1987
Permanent Ileostomy 1991
Crohn's Disease (just inside stoma) 2012
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