Crohn's Disease Forum » Surgery » Stoma Subforum » News of colostomy bag

10-15-2013, 03:16 PM   #1
Luckystar715's Avatar
Join Date: Mar 2013
Location: Missouri
News of colostomy bag

I just had a sigmoidoscopy for possible fistula and the surgeon didn't find any fistulas ( yay) but he mentioned to my mom that I would need to continue with medical management of my crohns if that didn't work then I would need a colostomy bag permanently. I am on humira every wk, 50 mg per day of 6mp, and 30 mg prednisone. I am very scared of a colostomy bag as I am only 28 and looking for advice.
10-15-2013, 03:22 PM   #2
Nyx's Avatar
Join Date: Jan 2010
Location: Barrie, Ontario

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It is scary, but for many of us it gave us our life back. I have a permanent colostomy and I love it!! I actually just got back from my doctor and I'm still crohn's free (after almost 4 years) and am on no meds for that I can do everything I used to do prior to my diagnosis, and after you get used to having a stoma you really do forget it's even there.

Good luck...any questions you have, fire away!

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)!!

10-15-2013, 05:34 PM   #3
nogutsnoglory's Avatar
Join Date: Sep 2009
Location: New York

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It can be scary and upsetting. I just had an ileostomy placed.

If you have it placed it may improve the quality of your life and could be a temporary solution till your disease state improves.

There is no sugar coating the fact that an ostomy changes your lifestyle but it may be the best thing to get you back to normal.
10-15-2013, 09:49 PM   #4
Senior Member
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Join Date: Dec 2011
Location: Geelong, Victoria, Australia

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I couldn't say that I "love" my ileostomy bag, as it does have its own problems. But every time I start grumbling to myself about it, I think back on losing control of my bowels in the middle of the supermarket or in the theatre or having to stop on the side of the road to throw up because of the pain - then I appreciate the life that it has given me back.
Crohn's Disease - symptoms since c1955, diagnosed early 1970s. On Prednisolone until...
Total Proctocolectomy in 2000.
Ileostomy that behaves most of the time
Currently on no medications, but under constant gaze of very caring GP, with annual blood and other tests.
10-25-2013, 03:32 PM   #5
Crohn'sFor Life
Colon Free!
Crohn'sFor Life's Avatar
Join Date: Jan 2011
Location: Honolulu, Hawaii
It has totally given me my life back. It makes me feel "normal".
Diagnosed July 2, 2009 Crohn's Colitis

Colon removed September 26, 2011.
Pathology showed UC instead of Crohn's.

I have arthritis that is very similar to RA, but not RA because I had UC.

Autoimmune related itch.

Meds: 15 mg/week Methotrexate for RA
Cetirizine for the itch
10-30-2013, 12:04 AM   #6
Crohnzie Girl
Senior Member
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Join Date: Jun 2013
Location: Carlisle, Pennsylvania

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Hey Luckystar, I was jus in ur shoes. Now, I'm not 28 but I still find myself too young to have one at first. Lol but honestly, after having it done I'm thinking to myself, now why didn't I do this much sooner?!? It's true, u do get ur life back. I just posted the very same thing just a few moments ago. You'll see. Subject is: I'm going back to work. Good Luck!
I have been on Asacol, Flagyl, Cipro, 6MP, Remicade, Humira, Cimzia and Azathiaprine. I failed each one of them. I'd be in remission for 6 mths at a time but then it come back full force!

Colostomy since 2013 best thing for me!

Looking for support and sharing stories.
11-02-2013, 10:58 PM   #7
CrazyCrohnieKatie's Avatar
Join Date: Oct 2013
I just got my ileostomy on Monday and I'm sooo glad I had it done. I'm only 23 and have a very active 5 year old, I wasn't able to do anything with him without worrying about a bathroom or having no energy. Even tho I'm still in the hospital recovering, I feel great. Better then I have in years. I have energy and have no pain and my appetite is amazing. It will take some time getting used to, but I wouldn't get mine reversed for anything. Good luck.
11-06-2013, 08:17 AM   #8
annawato's Avatar
Join Date: Apr 2012
Location: sydney, New South Wales, Australia

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I much prefer my ileostomy to spending months in hospital like I used to. Its nearly been a year since I was last in hospital (other than day surgery) Yippee.
Like Susan I don't love my ileostomy but its better than the alternatives, Colostomys are easier to deal with than ileostomys too as the output is less liquid adn less volume.
Wait and see whether medicines help before worrying about whether you may need one, but if you find you do need one there are loads of people here to offer you support. Have a read of some of the old posts in the stoma section. But keep in mind people usually post when they are dealing with problems so not all ostomys are as troublesome as the posts suggest.
Psychologically its a big change particularly if you are still dating however most of the ostomates that are dating say that its a good way to weed out those who aren't keepers.
Good luck with it all and keep us updated with how you are getting on.

you name it, i've tried and failed it! currently on- waiting to see whats new and reducing pred
temp. ileostomy reversed feb 2011, new ileostomy, nov 2012
4 resections plus removal of adhesions etc, recurrent intestinal abscesses
lyme disease, depression, sacroileitis, chronic pain and......Crohn's..........
11-07-2013, 11:45 PM   #9
Join Date: Dec 2010
Don't worry about it. You're still in a position where the disease could be controlled with medications and it may just be that you haven't found the right ones yet. I had problems with one TNF-A inhibitor but am doing fine with a different one. That said, a colostomy isn't the end of the world. Like you, I'm 28 and I've had an ileostomy since 21. It sucks a lot of the time but it certainly has its benefits. Right now though you should probably focus on getting the disease controlled through medication. You can quit medicine and take different kinds of drugs but once you've had your colon cut out of you you can't get it back.

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