View Full Version : ?? Questions About Cecostomy Operation??
We have been seriously thinking of having a cecostomy done for our 9 year old son. I have been researching it on line, and feel it might be the next step towards trying to control incontinince. I also have my thoughts directected towards artificial sphincter, but that is farther in the future, because they don’t perform the operation until 16 years of age.
I have a few questions that I need answered , that I cant find on line. What does the cecostomy look like, the actual opening in the skin. How big is it? What is the flap that covers it look like and made out of? Does the tube have to be changed often? Is it easy to take care of ?
I learned recently that it is easily reversed if the need comes, they say just pull the tube out and it will close by its self. I didn’t know that before. I think that is great, because I was always was worried about doing something that my son would regret having as he got older, but this changes it all. My last question is,but most important, is the operation safe????
Thanks kali
OK, well, you know that I am big fan of this operation because of the tremendous help it has given C in attaining bowel continence. I will try to answer your questions the best I can.
What does the cecostomy look like, the actual opening in the skin. How big is it?It is a small whole about the thickness of a standard pencil made in the lower part of the right abdomen, right near the underwear line. The surgeon inserts either a Mickey Button or a Chait Trap Door inside the hole. When you look at it that is all you see. I have not heard of other devices used over the opening but of course, there could be more.
Here is a great video of how easy the Mickey Button is to change http://www.youtube.com/watch?v=vX-VZT-Px8g
C has the Mickey button. I have changed it out several times at home by myself. It is nothing more than a feeding tube that doctors have done for years, they just put it in a different location. Because I know that where you live it is sometimes hard to get specialized equipment I would ABSOLUTELY use this button as it is very common.
The Chait Trapdoor is very cool but many doctors don't have much experience with it. It serves the same function as the Mickey Button does but it has a lower profile. You do need to go into the hospital for a quick outpatient surgery to have it changed. Here is a pretty good guide to how it is done: http://www.cecostomy.com/Patients_and_Families/Cook_Patient_Guide/PG-TDCS.PDF
We have a good friend who has the Chait Cecostomy and the big differences are that his is flatter and the water goes in much slower. His flushing routine takes about an hour everyday. C's takes 30-40 minutes every other day. I think it is because with the Mickey the water flushes through faster and stronger.
I learned recently that it is easily reversed if the need comes, they say just pull the tube out and it will close by its self. I didn’t know that before. I think that is great, because I was always was worried about doing something that my son would regret having as he got older, but this changes it all.That is exactly why we did it. If something better comes along then this is very easily reversed.
wow, it sounds great! You have answered everything that I have been searching for on line, and couldnt find. I will watch the youtube. this is what makes this site so great, you can learn so much by others who have experienced things that you just cannot learn from a regular report or article. Thanks Barb, youre the best!!!
No problem. :)
Just remember that the baby in the youtube video has the button for a feeding tube so it is on the opposite side and a little higher up then it would be placed for a cecostomy.
I sent an email to a friend who is a nurse hoping she can give me information about how to have the operation here, and is it successful here.
been wondering how your son is doing with the ditropan medication? how long has he been using it now?
Instead of ditropan they gave him detrol which does the same basic thing but is long acting and does not have the same effects. He became pretty constipated with it. So, they are having us deal with that and then eventually double the dose before he starts trying to cath regulary.
Keep me updated on what you can find out about doing this in your area.
I havent heard anything yet, but I will keep trying to find the info I need.
will let you know when I learn anything. When my son was taking ditropan he was taking it 3 times a day, does it mean your son will take 2 tablets 3 times a day? He hasnt tried to cath before while taking this new medication?
Detrol is one capsule a day. We take it at night but it doesn't really matter when you take it. That is one of the benefits to it over ditropan. No cathing yet on this new med. The DR wants to make sure that the medicine has a chance to work in his body before we try.
thats really interesting, going to see if I can find Detrol here! we also didnt try to cath when my son tried ditropan, but he took it for about 2 months and half, and we had to make sure he went to the bathroom every 2 hours, the doctor said we had to try and make a routine. He never mentioned cath. I think we just might give this another chance. please keep writing about your son's progress with Detrol. thanks
kali
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