HELP! Anyone with an ileostomy experience this?!?!

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Regular Member

Date Joined Oct 2009
Total Posts : 43
   Posted 10/14/2010 5:25 PM (GMT -6)   
My husband has Crohn's (currently not in a flare), post total colectomy in '96 with ileostomy and rectum intact. Since saturday he's been having "gut cramps and the urge to poop." Now as of yesterday he started having lots of actual discharge coming out! Of his rectum! Which is not attatched to anything! How is this possible? All of his output comes from his pouch so we're both very scared and confused as to why this could be happening! about a year ago when his GIs tried to do a rectal scope to check for rectal cancer, they were only able to insert the scope approx. 2 inches b/c of scarring. He then had HORRIBLE rectal cramps with ALOT of discharge and the urge to poo so terribly I had to take him to the ER b/c we thought they perforated his rectum (they hadn't)! Now he's having similar cramps but nothing has happened to bring it on this time. Does any of this sound familiar to anyone here and if so could you please explain it to us!? P.S. He goes to the GI doc on mon.

Veteran Member

Date Joined Feb 2007
Total Posts : 788
   Posted 10/14/2010 7:31 PM (GMT -6)   
oh don't be scared!
It's normal to have mucus to expel. The rectum is still living tissue, and ALL off the intestinal tract makes mucus. I'm surprised he doesn't have it more often. I have that urge every few weeks. And then I push the mucus out.

My stoma is a loop ileostomy, and the bottom hole also pushes out mucus.
29 yrs. old. married with one beautiful daughter (born 11/20/07)
-diagnosed with severe pancolitis u/c 2002 had total colectomy 12/19/08; emergency surgery due to abscess-had to redo ileostomy and switch to left side 12/25/08; 2/15/09 found blood clot in superior mesenteric vein (prob. from inf. and surgery inflammation)
i only take vitamins now, when I WANT to. :)
(temporary ileostomy)

Regular Member

Date Joined Jan 2009
Total Posts : 40
   Posted 10/14/2010 10:21 PM (GMT -6)   
This is totally normal! I had it as well and was very confused because of the same reason you are, i didnt understand how if my bowels werent attached to anything how i would need to go.  Its just mucus, you should be able to tell by the smell.  The only way there would be a problem would be if there was blood.  I went to my doctor saying, i keep feeling like i have to poop but i know its impossible but i thought since i hadnt done it in soo long(talking like actually sitting on the toilet and having a bowel movement) that i was just psyching myself out thinking i needed to.  He told me to let that stuff outta there!!  So, he should be okay!!

2b ColonFree
Veteran Member

Date Joined Nov 2008
Total Posts : 2603
   Posted 10/15/2010 6:02 AM (GMT -6)   
i assume his ileostomy is a loop. i have it too, about every 3-4 weeks i feel i really need to go, but it's only mucus building up in there and needs to come out. don't worry about it.
06/05/2007 - STARR procedure
colonic inertia w/pelvic floor dysfunction
08/16/2009 - total colectomy w/ileorectal anastomosis
07/08/2010 - loop ileostomy

Equestrian Mom
Veteran Member

Date Joined Mar 2008
Total Posts : 3115
   Posted 10/15/2010 6:13 AM (GMT -6)   
I had the same thing before my proctocolectomy...eight years worth skull

Has he thought about removing the rectum since he won't be using it? On my last scope they could only use the peds scope and got about as far as they did for your husband.
Crohn’s dx 1989
some terrible years before my
temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

Regular Member

Date Joined Sep 2008
Total Posts : 41
   Posted 10/15/2010 6:00 PM (GMT -6)   
Could also be a crohns flare in the rectum. I have had my rectum removed and do however still feel the urge and light amounts of mucus due to what little tissue is still remaining after surgery.
Crohns since 1994, inflammatory arthritis, chronic ulcerative proctitis, endometriosis, hypothyroidism, depression
Two doses of Tysabri IV beginning of 2009, no longer on too many side effects, hospitalized for neuro problems, med helped though
Allergic to Remicade which helped me so much for about 5 years before developing allergy also allergic to Humira and Imuran
Taking Asacol and Aciphex, prempro, synthroid, xanax, Vicodin, elavil and cymbalta 
Scheduled for ileostomy Oct 2009

Regular Member

Date Joined Oct 2009
Total Posts : 43
   Posted 10/15/2010 8:17 PM (GMT -6)   
Thank you everyone for the info! He's still worried, though, but he goes to the doc on mon. to ruke out a rectal flare. BTW, they want to take out his rectum eventually (sooner than later) but he is REALLY resistant to this. It may have to come out though.

Regular Member

Date Joined Feb 2005
Total Posts : 421
   Posted 10/16/2010 9:42 PM (GMT -6)   
My bum is all show and no go....or as my husband refer's to it "Allie's Barbie butt." Honestly, the best decision was to remove the rectum. Something else I no longer have to worry about!!

RX Crohn's 1999, over 30 surgeries, 3 strokes, permanent colostomy and rectum removal.
"The most unfortunate thing that happens to a person who fears failure is that he limits himself by becoming afraid to try anything new."
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