ILEOSTOMY due to pelvic floor

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lazybeagle
New Member


Date Joined Jul 2006
Total Posts : 4
   Posted 5/16/2008 3:43 PM (GMT -7)   
 
 
Im considering an ileostomy due to pelvic floor dysfunction where they would leave my colon in.  I learned that 80% of people within a year decide to have their colon removed which tells me there must be severe discomfort/issues that would cause them to undergo surgery again.  It sounds like mucous can build up in your colon (especially in pelvic floor) where you cant get rid of it very easily.  Anyone in this situation either with pelvic floor or just has an ileostomy with a colon left in that I can bounce some questions off of?
 
Thank You
 

Equestrian Mom
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Date Joined Mar 2008
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   Posted 5/16/2008 6:58 PM (GMT -7)   
There are many of us...ask away!

summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 5/16/2008 8:52 PM (GMT -7)   
i have never heard of that, i dont' see how they coudl leave your colon in, seems like having an unused organ in your body might be dangerous. Or maybei don't understand what you are saying.

lazybeagle
New Member


Date Joined Jul 2006
Total Posts : 4
   Posted 5/19/2008 8:37 AM (GMT -7)   
Im with Mayo Clinic and because its not UC or cancer where there is bowel disease its safer to leave the colon in in case the body cant adjust to the ileostomy so that you can go back and reattach things. Apparently however many people must have issues with the colon being left in, if they would choose to undergo the knife again within a year. I'm comfortable facing an ileostomy, but not thrilled about leaving my colon in.

For anyone that has an ileostomy with their colon still in (or was in that state before), how were things? Do you also have pelvic floor problems...and with pelv floor problems were you able to pass this mucus buildup or did it stagnate in the colon just as food would have before and cause nearly the same problems? And apparently with the ileostomy, waste may overflow into the colon on occasion tthrough the other side of the ileostomy. Did this cause problems?

Thank you!

Frustratedmom2
New Member


Date Joined Jan 2013
Total Posts : 11
   Posted 5/10/2013 10:45 PM (GMT -7)   
Lazybeagal ,

I am being told the same thing by my surgeon right now and am having the same concerns you did . Did you end up having a surgery? If so did it take away your pelvic floor issues?

Any advice would be greatly appreciated! Thanks in advance : D

Pluot
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Date Joined May 2012
Total Posts : 2500
   Posted 5/11/2013 6:13 AM (GMT -7)   
It's pretty common to leave the colon in the body when a temporary diverting ileostomy is used to treat Crohn's. I'm sure we have a few members floating around who are in that situation. The difference is that diversion often resolves or at least improves the inflammation in the colon, so once the ileostomy is in place they're typically not also dealing with the diseased colon. Not sure how this would work with pelvic floor issues as I don't really know much about it :(
Liz, 26
itslikethisuc.blogspot.com

dx'ed UC pancolitis 5/12

past meds: asacol hd, VSL#3, apriso, rowasa, xifaxan, 6mp, cortifoam, pentasa, cimzia, canasa, butyrate, flagyl, cipro, prednisone, remicade, methotrexate, cholestyramine, cortenema

current meds: none!

step one: colectomy, end ileo 1/16/13
step two: j-pouch construction, loop ileo 5/1/13
step three: takedown sometime

Mossmi33
Regular Member


Date Joined Jan 2013
Total Posts : 187
   Posted 5/11/2013 1:06 PM (GMT -7)   
Lazy beagle, I had a temp iliostomy for 4 months with 80% of my colon left in. I didn't have any problems with mucus or anything. Also, my doctor said I could stay that way as long as I wanted to but I wanted to have the reversal done sooner than later.

Would your ileostomy be temp or perm?

Larasmom
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Date Joined Sep 2011
Total Posts : 876
   Posted 5/12/2013 3:24 PM (GMT -7)   
I still have my colon in there, hanging around! I do have quite a bit of mucus though so am looking forward to having my next surgery in the fall to get rid of it.
40 yr old female with Crohn's disease in the large bowel, two strictures. Have only been on mesasol, asacol and pentasa. Prednisone twice and Imuran. Started Humira June 2012. Stricture stretching July 25 and August 15, 2012. GI perforated my colon causing emergency surgery and permanent ileostomy. Loving life without the pain of Crohn's disease!

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/12/2013 10:08 PM (GMT -7)   
Lazybeagle,

I had an ileostomy due to a sigmoid resection stricture following a sigmoid resection for what was thought to be sigmoidocele causing incomplete rectal emptying. Similar to a pelvic floor issue non-disease state. My colon was left in me. Due to not being able to evacuate the mucous I had periodic suctionings about every 6 months from the lower part of colon with a pediatric sig scope. This was just sort of "routine maintenance." That I did not find that hard to deal with.

I am an unusual scar tissue former (THIS WILL NOT HAPPEN TO YOU) but I have had 3 ileostomy stoma's scar in on me in the past year at the abdominal wall level. Again, do not worry as this will not happen to you. Anyway, in my 3rd stoma revision I had to have it done open. I did not think the surgeon would remove my colon as it was healthy and just sitting there. She did remove it however and when I asked about why she said there was a significant build up of hardened mucous in the cecum (farthest in part of the colon.) she was afraid of a mucous perforation. As it is I am having to have yet another ileostomy stoma revision due to scarring and likely a relocation of it. Colon removal wise, I have NO CLUE why this happened but after the unused colon was removed, the left side of my stomach dropped into my pelvis. I was told by another doc that this does not happen unless some connective tissue planes are cut that should not be. (Yep I really have fallen into a lot). BUT I suppose the colon can support the stomach. organs sort of rest on one another. I am not medically trained so I do not really understand what happened, but the radiologist sure was surprised when I had a small bowel follow thru and there was the left side of my stomach down in my pelvis.

So If they are trying to leave your colon in you. Yes, mucous can build up and you may not be able to evacuate it due to your pelvic floor issue. BUT the colon like anything else can be a support. Also a total colectomy is quite an involved procedure with ligating of major blood vessels etc.

So if they are planning to leave your colon in you, there are advantages and disadvantages. Again, worry NOT about going down the road I went mine is truly not the norm, I just wanted to give you the pro's and con's of keeping your colon. Also as you said, very important if you do not like the ileostomy and they keep your colon in you, the ileo can be reversed.

Good luck with your decision. Hope this sheds some light on why they might want you to keep an unused colon. It does have it's own blood supply and it does make it's own mucous. To my knowledge unless colon cancer ran in your family then there would be likely no harm in keeping it other than the mucous issue. Rosemary
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