perment illostomy

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swizz
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Date Joined Nov 2006
Total Posts : 4
   Posted 11/5/2006 8:33 PM (GMT -7)   
im new to this forum and i just had some questions about illostomy, but not new to UC i'v had it for 3 years and its been very painful with flares.  my doc says i should just go ahead and take it all out pouch and rectum and start a perment illostomy. Is there a risk in this surgery? i got more questions but cant think of them right now :/

suebear
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Date Joined Feb 2006
Total Posts : 5698
   Posted 11/6/2006 5:57 PM (GMT -7)   

I am curious why you would have a permanent ileostomy without trying a j-pouch first?

Sue


dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


swizz
New Member


Date Joined Nov 2006
Total Posts : 4
   Posted 11/6/2006 6:11 PM (GMT -7)   
i do have a j-pouch.  im on pred. to help the inflammation but i have so much in my j-pouch and rectum that its not helping and i also have been on other meds and those havent help either.

suebear
Forum Moderator


Date Joined Feb 2006
Total Posts : 5698
   Posted 11/7/2006 8:36 AM (GMT -7)   
Most j-pouchers do not have a rectum, that is if they had their surgery due to UC. Have you considered just getting your rectum removed? A remaining rectum or a cuff that is too long will continue to cause problems with UC.

Sue
dx proctitis in 1987
dx UC in 1991, was stable until 1998
1998 started prednisone, asacol, pentasa, nortriptylene, ativan, 6MP, rowasa enemas and suppositories, hydrocortisone enemas, tried the SCD diet, being a vegetarian, omega 3s, flax, pranic healing, yoga, acupuncture, probiotics
2000 lost all my B-12 stores and became anemic
2001 opted for j-pouch surgery- now living life med-free
 


ladybugg1968
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 11/11/2006 10:03 AM (GMT -7)   
I've been looking for someone to talk with. In Oct. 2004 at 36 years old they found a mass 5 cm. I was scared to death. My mom passed away in 2001 from colon cancer. I was diagnosed with rectal cancer. They chemo and radiation first, then a temporary ileostomy. In May of 2006 they had to do a permanent one. I don't know who to talk to noone understands how I feel.

ladybugg1968
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 11/11/2006 10:05 AM (GMT -7)   
Is there anyone out there who has a ileostomy?

Shaz032
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Date Joined Feb 2003
Total Posts : 1250
   Posted 11/11/2006 9:58 PM (GMT -7)   
ladybugg, it's probably better if you start a whole new thread with your question so people can answer it specifically :)

Swizz, I've had my ileostomy for 30 years now (since I was 10 years old). I'm guessing that you had a loop ileo before your j pouch formation. The risks would be roughly the same although I'm told that a permanent ileostomy is much easier to look after than a loop ileo as the output tends to be, on the whole, less watery.

Is the reason you're thinking of moving to an ileostomy again because you get crohnic pouchitis? If so, the ileo will stop that once and for all.

If you have any questions, feel free to ask.
I have had an ileostomy for 30 years now due to UC.
_______________________________________________
 
I'm not a complete idiot - some parts of me are missing!


ladybugg1968
New Member


Date Joined Nov 2006
Total Posts : 3
   Posted 11/12/2006 5:52 AM (GMT -7)   
Shaz032 , it's i have ni idea of what a j pouch is. They had to take out my whole large intestine it had 300 polyps in it. I have a gene that was passed on from my great grandafather,grandfather and 6 years ago my mom at the age of 50. It eat her up inside. I'm just getting use to all this again, I had a temporary ileostomy in 2005. They thought they could do a reversal but my small intestine has small holes, and it leaks. If you need to know more e-mail me back. Thank you.
 
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