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?

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.

For the permanent ones I thought after a certain amount of intestine loss you need one.

You will need one after alot of loss of intestine yes, because you would be completely incontinent. Lets hope you have plenty left!

I haven't lost a millimetre and I have a temp bag.
Disease effected bum needed a rest to heal.

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!!!!

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.

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?

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 :rof:

Wow that's a lot removed. Do you need vitamin shots or do you still absorb food?

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.

My anus is fine it's the loss of colon and small intestine that scares me.

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

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.

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

oo: 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

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!

aaahhh huni i hope it helps i really do xxx just wish they cud release wind not so loud. xx

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!

lol xxx

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

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.

2thFairy said:

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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Perhaps we could do a YouTube like this but of singing stomas. :ylol:

Hahaha!! Indeed!

wow thats great if u r keeping it.and out of pain xxx

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....

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

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!

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.

nogutsnoglory said:

Wow that's a lot removed. Do you need vitamin shots or do you still absorb food?

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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!

I was diagnosed in 1990 and have had Crohn's related surgeries. I have had about 4 ft total intestines removed and am currently experiencing symptoms that may be leading to another surgery. My rectal area is affected with scar tissue from flare, stricturing, and a repaired rectal/vaginal fistula. With that background I am growing very concerned that I may require a bag. I am not at all interested in that outcome. I appreciate this forum, and this is the first time I have posted. Trying to remain brave, but becoming overwhelmed. The disease has never remained in remission. Most all drugs have failed. Currently on Pentasa and a round of steroids. Nothing seems to work.

Hi Angels,

Welcome. You sound like you are having a tough time. This is a good place to talk to others that can relate. Check out the site and hopefully you will find some new friends and helpful information. I'm not sure about at what point the bag is required. I hope the day doesn't have to come for that. I wouldn't like one either.


Welcome again,

cmack

Your history with Crohn's sounds very much like mine, Angels. I fought extremely hard against the idea of having a bag, even though I was in crippling pain, couldn't control my bowels and nothing made it any better. In the end, after almost 40 years and numerous surgeries (a couple as emergencies in the middle of the night), my gastroenterologist gave me the ultimatum - proctocolectomy or death!

I had really left it far too long, which meant that the surgeon had also to remove a great deal of affected flesh around my rectum and anus - about the size of a large man's fist - and this took months to grow back and heal completely.

My proctocolectomy was in 2000 and changed my life. I can't say that I have no problems at the moment - there is always the balance between the sensible thing that keeps the outflow under control and that second glass of wine that throws it out of whack or the unexpected leak in the middle of the night or the difficulty of finding a clean toilet in the wilds of Africa...but, on the other side of the equation, since 2000 I have been on safari in Africa, I have visited Machu Picchu in Peru, I have snorkeled with giant tortoises in the Galapagos Islands, I have bush walked, bicycled, gardened - I have even bathed naked - except for my stoma bag - in Japanese onsen.

You learn to manage the stoma bag and, believe me, no-one else need know about it if you don't want them to.

I am happy to answer any questions that you have and you might like to post in the Stoma Subforum, under Surgery, to get more responses from people who are living with stomas.

Part of the reason I have been on the bag for 16 years is that I went too long without a proper diagnosis. Surgeon stated it looked like I had it for most of my lifetime. I know it started with blood in the toilet when I was 20, after numerous abcesess and two nasty annal fistulas by the time I was in my 40's they had to save my life with emergency surgery to bring the infection under control and after weeks in hospital they finally did the colostomy when I was stable enough. Doc chopped away half of my colon with apendix and about 3 feet of small bowel.

I feel better, took retirement and built myself a comfortable outhouse. What I found was the messiness of splattering the inside toilet (bombing it is a better description). Like when you have this bag glued to the side of your belly one has to stand and bend forward. Those bag loads hit the toilet hard and splatter. Then there is the reek of the high octane rating that comes with the shorter bowel and looser output that is not quite fully digested.
No the only reasonable thing to do was to build and outhouse. The bathroom inside now spotless clean. I do my business out side in my outhouse with a simple hole in the floor. This has been a huge success, with the only drawback being in summer. I will not go out there in the dark after being stalked many times by black bear we have here. Winter time is no problem, emptying a bag takes moments, it can be done with a housecoat even in the cold.
The outhouse is about 75 feet from the house. I often go several times a day, and by the beaten down look of the pathway a person would think that a large family is using it. I wonder how many miles of outhouse distance I have walked in all the years now.
I'm lucky to live in the country, it would be harder in an urban environment, though I would assume there must be special toilets available without a toilet seat and some way of stopping spattering.
Life on the bag can be a challenge at times, but our lives continue and that's the main thing.

What to do..

I find that, if I sit right back on the toilet seat, I can empty my stoma bag in front of me. It doesn't completely get rid of splatters on the inside of the toilet bowl but is much more easily controllable. A small spray of orange oil gets rid of most of the smell and doesn't involve chemicals.

I LOVE LOVE LOVE my life with a stoma!! Best thing ever. I've had mine for 5 years and the only people that know I have it are those who I have told directly. I have shared meals with, shared a bed with, and even changed clothes on a daily basis with other people and my secret remains intact. After many many years of disease, having a stoma can mean a new beginning, not an end.

A stoma is a new beginning and a second chance at life. Without the stoma surgery I would not be here today.