Ileostomy output or lack thereof

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Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 7/21/2011 12:46 AM (GMT -6)   
Now I could just be an over thinking, over-worried Mom lol However I'm worried about my daughter. She's been med free and no major issues for some time now. She had her surgery in Feb '09. Anyways, She hasn't had any output for about 11 hours. She has some minor abdominal pain, some nausea, some blood that was in her last output early this morning after her pouch exploded off (literally came off), but has no fever.

I did call the On-Call GI Dr and was told to just keep feeding her fluids to try and get some output. To give her tylenol if she ends up running a fever as she is not on any meds, she doesn't need to be seen right away. If by morning there is still no output, then to call back and they will do an x-ray.

Is this normal practice to just wait and see? She always has some kind of output so this is new. I've been giving her tea and gingerale and she is having a warm bath as I read that may help. I'm just concerned that if this is the start of a blockage and we wait, that it could turn into something big. She feels like something is not right and who else would know better, know what I mean? Am I just being silly to be so concerned?
Mom to 5 special children
14 yr old- GAD, PTSD, ODD, LD
13 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma, Osteoporotic
11 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
10 yr old- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
3 yr old -Bright and Happy

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 7/21/2011 1:15 AM (GMT -6)   
You are not being silly to be so concerned. Be sure to only give her clear fluids until she has output, or until the drs. say otherwise. Nausea, lack of output and fever are all symptoms of a blockage or just a partial blockage... could it have been something that she ate? It also could be just a kink and there are many things, like hot baths, that help to relax the body and let the body work together. Is she able to lightly massage the area that "doesn't feel right"? Try to have her to keep moving, rolling in bed. Sometimes caffeine, ie tea is a great idea, will move things along. Do stay in touch with the drs. And let us know how she is doing...
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

stripey
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Date Joined Feb 2011
Total Posts : 1059
   Posted 7/21/2011 9:57 AM (GMT -6)   
It does sound like there could be a problem if no output for many hours. Keep up the fluids and like peggy says massaging the area and walking around can help 'move' things along. If anything gets worse then I would get in contact again. Hopefully it will sort itself out and is just a small hiccup but if in doubt call the doctors again.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

Sami'sMom
Regular Member


Date Joined Oct 2009
Total Posts : 32
   Posted 7/21/2011 11:27 PM (GMT -6)   
Thank you! She still had no output this morning so her surgeon had us come in right away. I guess this morning a little boy passed away from blockage so the dr wasn't taking any chances. When I heard that, it did made me cry knowing it can happen. Anyways, the dr did an x-ray and checked for stenosis. There was no narrowing but she did find that some stool had solidified in the stoma so it was causing the lack of output. Like you guys suggested already, she said lots of fluids, to keep moving around and warm baths. She also said no gas producing foods for the time being. If Sami starts to vomit or starts running a high fever, then to bring her back in and they will reassess. Still not sure about why there was some blood though. Her labs from last week were as normal as they can be for someone with Crohn's. The dr also said that she wasn't a very gassy person as the 2 gas pockets that Sami has, doesn't show alot of gas in them. I guess that's a good thing?

*sigh* you think you know everything you can about the disease and the surgery, but then you find out more. Like finding out 2 yrs after surgery that not only did she lose the large bowel, but 20% of the small bowel and now needs B12 shots because she no longer has the part of the small bowel that absorbs it. shocked
Mom to 5 special children
15 yr old- GAD, PTSD, ODD, LD
14 yr old- Crohn's Disease-total Colectomy Feb 09, PTSD, Dystymia, JRA, Asthma, Osteoporotic
13 yr old- Globally Developmentally Delayed, Low Cognitive Functioning, PTSD
11 yr old- Epilepsy, Unspecified Social/Emotional Disorder, PTSD, LD
4 yr old -Bright and Happy

peggy113
Veteran Member


Date Joined Aug 2007
Total Posts : 1998
   Posted 7/21/2011 11:52 PM (GMT -6)   
Did you know that she can be trained to give herself the B12 shot IM in her thigh? When I first starting taking mine in 1984, I "HATED" needles, even after surgeries. $$$ vs. Needle-hate = I learned how to give them to myself! Very, very reasonable to do it that way. My dr just prescribes the syringes, a lg vial of the cyanocobalamin and you are good for quite some time. Remember, it is a lifelong injection, right?
CD diagnosed in 1979. Ileo in 1984. No recurrence of CD! Some issues with adhesions still.
Husband diagnosed with ALS (Lou Gehrig's Disease) March 2008 - taking one day at a time, enjoying our time together.

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/25/2011 4:48 PM (GMT -6)   
Sami's mom,

Glad your child got seen. I assume she has an ileostomy. Anything beyond 6 hours with no output is an emergency!!! WHere was this doc's head? It took another child to die to get some action???????? Jeeeze! LOTS of hot tea and walking often breaks up a food blockage. Normal for no output from an ileo is only 2 hours. I once had a potato blockage that took 10 hours, a gallon of hot tea, and endless walking to clear. Important to discern there are no adhesion narrowings. A CT Enterography shows this best. All you do is drink plain water for the contrast (lots of it) then they do IV iodine and send you through the CT machine.

Oh, yeah, that B12 is a well-kept secret. Nothing ever ceases to amaze me the secrets that are kept. I did not lose the last part of my ileum along with my ileostomy, my B12 deficiency pre-existed and I had to have the ileo to save my life due to irreparable damage to rectum and colon, but for those like your child, I would think they would have mentioned the B12. The terminal ileum (last part of small intestine) is the only place in the digestive system that absorbs B12.

ALSO, did you get her vitamin K levels checked??? Vits K1 and K2? Vit K is produced by the colon. Without the colon in the loop any more, my Vit K was VERY low. Now I am on supplements of Vit K and it is fine. Vit K is important as it has to do with our ability to have our blood clot. Your mention of bleeding had me thinking this might be lack of Vit. K. Rosemary

esoR
Veteran Member


Date Joined Jan 2007
Total Posts : 4147
   Posted 7/25/2011 4:49 PM (GMT -6)   
OOoops! Sorry, dumb question on my part. Looked again at your post and obviously she has an ileostomy. I got into thinking ileostomy or colostomy? Then I reread the title of your post. BUt my answers still may help. Rosemary
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