Question to the Group:
Hello from AZ...
I'm new to this site and saw a discussion regarding Ileostomies.... I thought I would throw this discussion out there...
We have a 3yr old daughter, diagnosed with a Chromosome and Cellular disease.... Okay- We've had the Motility Studies done at Cinci Children's and it was discovered that she has several areas in her "small intestine" that do NOT move or function (i.e. abnormal)..... She currently is "tube fed" 24/7 with a GJ Tube.... She's had a fundoplication, which has helped with her severe reflux....
My question is... If the "j" feeds do not improve her bowels...... we may have to resort to some type of ostomy..... To be honest, I'm not sure what type? If she is NOT moving things through the small intestine, do they usually do an ileostomy for that? Just curious.....
Keep in mind, she eats nothing... or her diet is extremely limited due to severe food allergies and/or aspiration.
Appreciate your input!
Julie in Prescott, AZ
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Ileostomy vs. Colostomy- 3yr old Motility Issues
- By JMedlin9425
- Posted September 1, 2009 at 11:04 am · 2 replies
- In Pediatric
- Shared with the public
Explore topics in this discussion:
Familial polyposis Osteopenia Surgery Ostomy Rickets Allergies Ulcerative colitis Stress
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- By katbrow
- Posted September 1, 2009 at 2:14 pm
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Bless her heart. It is heart breaking to hear of one so young with so many problems. I cannot answer your question but I can pray for her. Keep us updated on her progress. I know there are others who can shed some light for you on this subject.
- By GI_dysmotility
- Posted September 2, 2009 at 3:03 pm
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Hi Julie,
I am so sorry to hear this. Whether they perform an ileostomy for something like this I don't know. Usually a total colectomy with an ileo-anal anastomosis (j-pouch) is performed for Ulcerative Colitis or Familial Polyposis; probably other reasons but I'm not sure.
If she's having problems with her SB (small bowel), I think either way you go this will be an issue since the SB is dysfunctional. If you remove the colon, this can lead to other issues in addition to her absorption. I don't know what to say Julie. I hope the feeding tube works. There is a probiotic, over-the-counter, called Digestive Advantage for IBS. I have slow motility in the bowel (never diagnosed but I can feel it) and have a total colectomy with an ileo-anal anastomosis due to UC. By taking this, I can feel my food move. Also, a heating pad helps. So does accupuncture (if you find the right person but they probably wouldn't perform this on a 3 y/o) and yoga (there is yoga for children).
I would try everything possible before surgery. If she has a colostomy done, they may be able to reverse this/reconnect this in the future but again, I'm not sure. Once you remove the colon there's no going back. There are SB transplants but that's not a good idea, in my opinion anyway. The life is only 5 years; whether they are referring to the SB or the patient I don't know. She needs as much of her small bowel as possible as long as it absorbs the nutrients. The Jejenum absorbs most or all of the nutrients. The Ileum produces vitamin D plus is used for a few other things. Once the ileostomy is performed, the water absorption changes as well as vitamin D production (I had rickets an had osteopenia since my late 30's).
I don't mean to scare you, I'm just stating some facts that you should know before you make any decision. I truly regret my decision as this was my first bout of pancolitis and they do not suggest surgery for this - it's called Prucare HMO ('87). I didn't even know what a colon was and it's function. I now have Crohn's symptoms (anal structures, had a fistula, SB obstructions due to stress, etc.) and IBD does not run in my family. IBS does.
I strongly recommend that you do your research and try everything before any type of surgery.
She's in my prayers -
Becky
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