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cecostomy for CIPO?

dzeldin
  • By dzeldin
  • Posted June 30, 2009 at 10:35 am · 4 replies
  • In Pediatric
  • Shared with the public
0 Recommendations

I am very new to this whole forum, but could really use some advice. My 4 year old daughter has a congenital form of muscular dystrophy. It is also thought that she has a chronic pseudo-obstruction disorder. We have tried at home clean-outs, hospital clean-outs, and she is on a daily regimine of Miralax and Sennokot...none of which have helped. Her GI now wants to perform a cecostomy to help keep her cleaned out. I have thus far been against any surgery, but my daughter continually looses weight, has a lot of bloating, pain, and is always on the toilet pooping 5 or 6 times a day due to all the laxatives. Has anyone else got a cecostomy for CIPO??? Any information/ advice is helpful!

Explore topics in this discussion:

Asthma MiraLax Surgery Incontinence Allergies Fecal incontinence Constipation Pain Muscular dystrophy

4 replies

shan789

My son has a cecostomy, he has Hirschsprungs. Before the cecostomy he was on a lot of laxatives and enemas. He was taking them from age 3 to age 8. At 8 all the meds quit working and he was in the OR every month, sometimes 2 times a month for disempactions. Nothing kept him clean. He did have leakage and accidents. It has been a yr. since his cecostomy and every thing is great. He has not been back to the OR.

Every night he hooks himself up, he uses a bag that is hung from the shower curtain. The solution runs through in about 10 min, and then he sits for about another 20 min. While he's doing it he reads, wathches a video on a portable DVD player, or he plays his DS. I to had reservations about this procedure, but it has been the best thing for my son. It has give him back his self esteem and privacy.

Shannon, Jake 13 yrs., HD, colostomy 2 days, pullthrough 11 months, chronic constipation, cecostomy 12 yrs., asthma, food allergies, EGID, Troy 17 yrs. www.caringbridge.org/visit/hdandjake

dzeldin

I think the reason I am even more hesitant with doing the cecostomy is the fact that my daughter has never had any fecal incontinence. That is even true during her clean-outs...it is actually pretty amazing. The main problem is that as soon as the hospital clean outs are over, the poop starts to accumulate again. She is on a LOT of Miralax and Sennokot and has loose stool everyday, but it still also backs up.
Does your son have a pump for his cecostomy or do you do it with just a bag? How long does it take everyday? I just keep hearing about children forced to sit for hours on the toilet waiting for all the solution to expell. I can't immagine it!!!

maddogrock

My son had his cecostomy procedure done 3 yrs. ago @ age 8 . His problem was not for CIPO but a motility issue . He has done well since the surgery . I was also hesitant to do the surgery but it has allowed him to be free of incontinence ( of the stools ) .
We deal with a pedi GI in Boston .

proudmom2x

My daughter has a cecostomy. I think I may have already sent you a email about it. If not let me know.

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gimotility: RE: 2009 AGMD Digest.Motility Symp. "Hirschsprung's dis., most common cause of lower intest. obstruct. in neonates," Rodriguez MD.

gimotility: RE: 2009 AGMD Digest. Motility Symp."IBS accounts for 30% of all health related costs in gastroenterology" www.agmd-gimotility.org

gimotility: From 2009 AGMD Motility Symp.: "IBS is the most common chronic med. cond. worldwide" Pimentel, MD, http://www.agmd-gimotility.org

gimotility: AGMD Digestive Motility Symposium-Much Information & Insight. Stay Tuned For Highlights. AGMD: http://www.agmd-gimotility.org

gimotility: Hurry And Register For Extraordinary Symposium Featuring Renowned Experts In Digestive Motility. http://www.agmd-gimotility.org

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