How long will she leak?

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dolf
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 5/8/2010 3:23 PM (GMT -6)   
On Wednesday my wife had a partial ileostomy. Everything seems to being going well (apart from today they took the morphine off her and she's in quite a bit of pain). She has a tube up her bum to drain out any mucus which is flushed out twice a day. But it leaks a bit and the tube often falls out - as you can imagine it's pretty stinky and makes her feel unclean.
Anyone know how long this will continue to leak? I don't quite understand how it will stop leaking if her remaining bowel is still open?! We will ask the surgeon on Monday but thought people may know from experience.
Thanks

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 5/8/2010 6:19 PM (GMT -6)   
WOW! This is bizarre! As far as I know, you either have an ileostomy (all poop diverted through the small intestine and out the stoma into a bag) or you are all together with poop coming out of the colon and rectum.

Has she had her colon removed? Still, her rectum would be hooked to her small intestine for "normal" defecation OR she would have poop coming out of the ileostomy stoma (small intestine brought out through abdomen) so poop goes into a bag.

Let us know what the arrangement is. This is a new one on me.

Rosemary

dolf
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 5/9/2010 1:27 AM (GMT -6)   
Ok so she has a stoma and bag which is fully operational. They left the rectum and a few inches of the lower bowel to allow options for later. So the tube is draining her bum which is 'resting' but still leaking abit. But for how long!?

pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/9/2010 5:47 AM (GMT -6)   
I had some leakage occasionally until I had my takedown. Toward the end, it was happening every night. I only had my stoma for a couple months, though
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day)


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/9/2010 6:01 AM (GMT -6)   
That portion left below the stoma will continue to produce mucous that will need to be passed the old fashioned way. The amount varies from person to person and should slow down, in amount and frequency, from what she is experiencing right now. Most people can feel when they need to pass something and get to the bathroom on time...when she has recovered from surgery she can wear her choice of feminine product to protect from an accident if she wants.
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


pam222
Veteran Member


Date Joined Jun 2009
Total Posts : 985
   Posted 5/9/2010 6:11 AM (GMT -6)   
Yes, I should note, if it was during the day, it just felt like I had to go the bathroom and I could go. It was only at night that I ever leaked, and it happened most often when I was in the hospital on pain meds because I think they just relaxed everything so I didn't wake up
27/F Diagnosed with unspecified UC 11/08 (symptoms for over a year before)
Asacol, Prednisone, Remicade with no success--no remission for over 2 years
8/09 colonoscopy shows that the whole colon is affected
12/18/09 Removal of colon, creation of J-Pouch and ostomy; recessed stoma
12/30/09 Takedown too soon; RV fistula
1/9/10 Second Ileostomy Surgery with sparing of the J-Pouch
1/25/10 Stoma Revision Surgery and Attempted Fistula Repair(couldn't find it)
3/30/10 Takedown again
Imodium (8/day), Questran (3/day), Flaygl 250 mg (3/day), TPN 14 hrs/day, IV fluids 4 hrs/day Prednisone 7.5 mg (1/day), Florinef .05mg (1/day), Sandostatin infusion 300 mcg (2/day)


dolf
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 5/9/2010 7:20 AM (GMT -6)   
It seems she has an abcess on or around her anus. That's what's leaking and smelling so bad. Also that's why she's been feeling so bad today and yesterday. Hopefully she's in being drained right now - I'm waiting for a call. sad

cleo35
Regular Member


Date Joined Feb 2007
Total Posts : 430
   Posted 5/11/2010 3:44 PM (GMT -6)   
Glad I had the permanent surgery from the get-go. This sounds like at least one "fun" aspect of crohns I've managed to avoid!!

dolf
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 5/12/2010 5:32 AM (GMT -6)   

The dramas continue!!

She was feeling very ill on Monday morning and threw up a lot of bile.  They have had her on a drain since then and it's still coming out!!  How long should we expect this to go on? The docs say until she's empty but surely you just keep producing it?! 

Obviously with this going on she has not eaten for 2 days which is not helping her recovery from the ileostomy.  Whatever next cry


Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 5/12/2010 6:13 AM (GMT -6)   
a bout of Ileus is not uncommom...it just means that her intestine has either not woken up or gone back to sleep. An NG tube will empty her stomach until they wake up and make her more comfortable (I know it doesn't look it but the pain would be worse).

She shouldn't eat until they wake up and when they do she will start with clears again and work her way back to real food. Have they been letting her have popsicles?
Crohn’s dx 1989
some terrible years before my
Proctocolectomy in 2008


Sesberry
New Member


Date Joined Apr 2010
Total Posts : 9
   Posted 5/18/2010 8:31 AM (GMT -6)   
I can't help with any info I'm afraid, just wanted to say we've been thinking of you guys since you commented on the blog and hope it all goes smoothly from now on.

Are they giving her a decent anti-sickness drug? We went through about 5 different ones until they found one that worked for Andy.

rovin1959
Regular Member


Date Joined May 2009
Total Posts : 159
   Posted 5/19/2010 4:44 PM (GMT -6)   
I have no advice either. Stay strong for her,and I will send up a prayer.

Mary Lynn


Suzy2
Regular Member


Date Joined Aug 2003
Total Posts : 335
   Posted 5/21/2010 7:21 AM (GMT -6)   
Have just seen this thread. How is your wife doing now Dolf? Is she feeling better?
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dolf
New Member


Date Joined Feb 2010
Total Posts : 9
   Posted 5/21/2010 9:16 AM (GMT -6)   

Thanks for asking.

Her open wound from the abcess is being cleaned and dressed daily but as she's now using her pouch, it's healing up nicely and staying clean.

After nearly a week of draining bile off her stomach, she finally found an anti sickness and anti cramping med that works for her.  She's been eating lots for 2 days now and the surgeon is talking about sending her home early next week yeah   - so fingers crossed it's all looking good.

Her stoma's been flowing like a good'en.  She even had a bag blow out the other night because it got too full while she was sleeping.  nice!!

 

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