Guest guest Posted July 7, 2001 Report Share Posted July 7, 2001 , As a matter of fact, my son son just got back from Floating Hospital in Boston where he had special manometry studies done on his colon. These type of studies are only done in 3 places in the country and the doctor he saw there was one of the inventors of using the manometry machines this way. At any rate, we learned that his entire colon was neuropathied and that the only thing he can have is a cecostomy. We have tried everything on the market. There is a website put together by a doctor in Canada called Cecostomy.com which was very helpful. We have just started to use the Nu-lytely thru his G tube and it is working fairly well. He gets 16 oz and usually we have result anywhere from 2 hours to 10 hours later. I believe that when we get the Cecostomy done that it what will go thru the tube. We have 2 GI docs down here in New Jersey that have strongly agreed with the doctors in Boston so we are probably going to do it in the fall. He has multiple issues and does poorly with surgery so we really need to get him bulked up for this. Hope I was helpful Laurel Mom to 10 year old son with Complex 1, PDH, Asperger's Syndrome, Lennox-Gestault Seizure Pattern, Ketogenic Diet, etc Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Dear Laurel: Thank you for your input. Interesting. Seth had manometry studies done although it was rectal not colon. I hope things go well. When will the cecostomy be done? We are going for more tests later this month. I had also found that website, very interesting. Let us know how things go. Thanks, Original Message: ----------------- , As a matter of fact, my son son just got back from Floating Hospital in Boston where he had special manometry studies done on his colon. only thing he can have is a cecostomy. We have tried everything on the market. There is a website put together by a doctor in Canada called Cecostomy.com which was very helpful. Hope I was helpful Laurel Mom to 10 year old son with Complex 1, PDH, Asperger's Syndrome, Lennox-Gestault Seizure Pattern, Ketogenic Diet, etc -------------------------------------------------------------------- Mail2Web - Check your email from the web at http://www.mail2web.com/ . Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 12, 2001 Report Share Posted July 12, 2001 Our son had major constipation problems when he was younger, including regular use of suppositories and bleeding. The doctors basically told us to get used to it, because it was part of the disorder and there was little that could be done about it. We made some major dietary changes, esp. fresh raw carrot juice - tried canned prune and pear juice, and although they did help, they were not as affective as the vegetable juices) and he has not had any problems for years. I recently shared this with another parent whose daughter goes to the same school as . She has had major constipation problems, requiring hospitalisation on several occasions, but the diet changes are already working for her. Regards, & Savage. Cecostomy ? > > Our son, Seth, has had severe constipation and other GI problems. We went > > yesterday to see the Gastroenterologist. An x-ray showed he is full of > > impacted stool. So, Seth goes to the hospital tonight at 5 for a Golytely > > cleanout (his third unfortunately). The doctor says his colon is not > > working well. > > > > As a longer-term solution, the doctor is considering recommending a > > cecostomy (a tube entry though the beginning of the colon which would > > allow for irrigation and flushing of the colon). Do any of you have > > experience with this? Or experience running Golytely at home through a J > > or G tube? Any information would be helpful. > > > > Thanks! > > > > , Mom to Seth, 10, mito - and Ben, 5, suspected mito > > > http://www.umdf.org/support/listpolicy.html - please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 13, 2001 Report Share Posted July 13, 2001 , We do not have a date for the cecostomy yet as we are trying to get his platelet and VonWilbrand's Syndrome fiqured our first. The only places that do the colonic motility are Floating Hospital for Children in Boston, A hospital in Pittsburgh and another one in California (although I think that doc is moving). They are quite invasive, however, give much more info about colon function than the rectal. We now have the opposite of constipation as he is not having formed stools anymore - just water all the time. I know its because he is losing the muscle tone in his colon and it is becoming smooth. I just want to hold off till fall. Take care and good luck Laurel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 14, 2001 Report Share Posted July 14, 2001 Children's Hosp of WI does colonic motility testing and so does Cincinnati. Anne Re: Cecostomy ? > , > We do not have a date for the cecostomy yet as we are trying to get his > platelet and VonWilbrand's Syndrome fiqured our first. > > The only places that do the colonic motility are Floating Hospital for > Children in Boston, A hospital in Pittsburgh and another one in California > (although I think that doc is moving). They are quite invasive, however, give > much more info about colon function than the rectal. > > We now have the opposite of constipation as he is not having formed stools > anymore - just water all the time. I know its because he is losing the muscle > tone in his colon and it is becoming smooth. I just want to hold off till > fall. > > Take care and good luck > > Laurel > > Please contact mito-owner with any problems or questions. > > Quote Link to comment Share on other sites More sharing options...
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