Crohn's Disease Forum » Surgery » Stoma Subforum » Stoma/Ileostomy?

11-23-2011, 01:31 PM   #1
Senior Member
Join Date: Feb 2011
Location: London, United Kingdom

This probably sounds very dim I was just wondering what a stoma and ileostomy is? and I was just wondering why did you guys get one? (I make it sound like its something you went out to the shops) I know its personal, but i keep coming on here, seeing all this stuff about these things and then panicking..and then i just thought perhaps its better to ask you guys then go on the ever wonderous google..
11-23-2011, 01:44 PM   #2
Crohn'sGirl's Avatar
Join Date: Aug 2011
Location: Vero Beach, Florida
I just had an ileostomy about 3 weeks ago. For me the ileostomy is a temp so no part of my intestines were removed. For some an ileostomy means that they had part of their small or large intestine removed. What they did for my ileostomy was made a few incisions and looped part of my small intestine up out of my body and onto the surface, that part is the stoma. A bag attaches to your skin over your stoma and you poop into the bag instead of going to the bathroom like you used to. For me it is giving my colon a rest and a chance to heal from all the infection from my Crohns disease. Everyone has a different reason they get an ileostomy. Hope I explained it somewhat decent. It is all still very new to me.
Meds: Tried Lialda, Humira, 6 MP, and Prednisone
Currently taking 6 MP and Remicade every 8 weeks

Diagnosed in 2010 with Crohn's Disease

Had ilestomy 10/31/2011 and learning to take one day at a time.
11-23-2011, 01:56 PM   #3
Liverpool FC
Join Date: Apr 2010
Location: Northern Ireland, United Kingdom
I had a temporary one too. I had mine for round about 8 weeks i think. Mine was an emergency one as a result of a leak following a resection, and like Crohn'sGirl was to give the rest of the bowel a break and a chance to heal up before the reversal.

This will sound a bit odd perhaps but having one was a positive experience for me as a person. I coped with it a million times better than i thought i could and it made me realise that I could adapt and cope with a lot more than I thought. I suppose though its easy to take that approach when you know its temporary.
150mg Azathioprine
2g Pentasa

SB resection 2011
Reversed lleostomy 2011
11-23-2011, 04:09 PM   #4
Crohn'sGirl's Avatar
Join Date: Aug 2011
Location: Vero Beach, Florida
Mine is temp but from what my surgeon says alot of his patients experience a whole new wonderful world and life with an ileostomy and choose to make it permanent even though at any point they can have the reversal. I agree though that dealing with this has its moments of complete panic as I call it and a quick "can I really do this?" but then I get to eat a whole meal without getting up in the middle of it to run to the bathroom and I can go to the store and shop without thinking will I make it to the bathroom in time and I realize I can do this!
11-23-2011, 05:01 PM   #5
Senior Member
Join Date: Feb 2011
Location: London, United Kingdom
Ok, being a little bit more dim, but whats a resection?! thank you for everyone who is telling me this stuff!Actually is very helpful! so an ileostomy is for your rear end or for your bladder? thank you!
11-23-2011, 05:16 PM   #6
Senior Member
robbo87's Avatar
Join Date: Dec 2008
Location: Wigan, United Kingdom

My Support Groups:
A resection basically removes a damaged part of bowel, either thats perforated or just severely damaged from crohns or UC. and then it is joined back up. However if the whole colon is removed or for whatever reason the bowel cant be joined up. Or a certain section of the bowel needs a rest then you'll have an ileostomy or colostomy. So an ileostomy for example would be where your small bowel is brought out of an opening on your abdomen and the waste goes into a bag, this bypasses the colon and rectum and either gives it a rest to later be reversed or may be permanent if like in some cases the rectum and colon have had to be removed.
My Story
Diagnosed 2008
Currently taking
omeprozol 40mg
codeine x4
ferrous sulphate
folic acid

ileostomy, colostomic mucus fistula stoma. gastostromy after recent surgery

tried, prednisolone, pentasa, azathioprine and infliximab
11-23-2011, 07:49 PM   #7
Nyx's Avatar
Join Date: Jan 2010
Location: Barrie, Ontario

My Support Groups:
I have a permanent colostomy. What that means is that I have a bit of my large intestine sticking out of my stomach (my stoma...his name's Oscar). Ileostomies are made from the small intestine. My rectum and anus were so diseased that a resection is not possible for me. I still have to go and get my anus sewn up, and my rectal stump removed, as my surgery was an emergency and they couldn't get my permission to do it all at once.

Hope this cleared some things up for you!

Crohn's Diagnosis: May 2006
Current meds: none
Surgeries: Colostomy, December 2009

"Never trust a fart." Jack Nicholson, The Bucket List

Oscar is awesome! Loving my life with my stoma (with a hint of poo)!!

11-23-2011, 08:15 PM   #8
ameslouise's Avatar
Join Date: Feb 2010
Location: Pottstown, Pennsylvania
Hi Gracifer - There are some pictures here toward the middle of the page of Michelle's stoma so you can see what it looks like:

Plus some cool scar pics from other ostomates and pics of people with bags etc.

Somewhere there's a video of Michelle's stoma moving around but I can't remember where it is!


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