Re: TCS Surgery and ACE

[Guest guest]

I have heard many wonderful things about the ACE. I actually contemplated it

for a while after my paralysis. It took me a long time to find a bowel

program that worked. When I first started, it was taking me 4 hours a night

to do it. That was just crazy. 6 years later, and I finally got my bowel

trained. It took about 2 years. Slowly going down from 4 hrs a night, to now

between 1- 1/2 hrs every other night. I thought about the ACE, but I had a

total of 3 surgeries in my life and none of them turned out right. I just

wasn't ready to commit to another surgery. While I know the ACE isn't

neurosurgery, surgery just hasn't been the luckiest thing for me. If I

developed problems in the future, I would definitely consider it as an

option. Having a good program to manage b & b really does improve one's

quality of life.

I can't imagine that the MD doesn't want him to continue his bowel program

after while IP after the untethering. Did you ask him what his plan is to

manage your child's bowels while he is IP? He can't just " not go. " That is

UNACCEPTABLE! I would start with consulting your GI/surgeon who did the

surgery. Ask him or her if he/she has any suggestions about how you can

perform the ACE while he is lying in bed post-op. I'm sure they will have

some suggestions. Can't you perform the ACE while lying flat in bed?

When I was in IP rehab, the RNs start your bowel program in bed. First they

get you cleared after (usually) weeks of back-up from the previous hospital.

Then they train you to do it. Either in bed or on the toilet - depending on

what is easiest for you/your caregiver. putting the water into the stoma

should still clear the colon, even lying flat (I would think). Maybe not as

easily, but I would think it would work.

Do you have a Model SCI Center near you? If so (or even if not, give the

closest one a call) and ask to speak with one of the nurse educators for

B & B. They should have some good suggestions for you. They will know you

can't just stop a good bowel regime for days at a time (one night, maybe,

but not many in a row). Here is a link to the list of MSCICs

http://www.spinalinjury.net/html/_model_centers.html

I'm so happy to hear that your son got a good bowel program. I think too

many docs that deal with TC (even the neurosurgeons) don't know that it is

possible to be continent with neurogenic b & b. You CAN train your bowel. It

can take a while and doing a bowel program takes a little longer than the

" normal " way. No more just pulling down the pants, plopping on the commode

and going, flush and up with the drawers. Its much more involved, but

continence is worth the time and effort.

As far as the stoma closing if for some reason you can't find ANY way to

perform the ACE while he is IP, I would think that there ought to be some

kind of " place holder " (for lack of a better word) that you can place in it

to keep it from closing (becoming too small to use or closing completely). I

did a quick search about keeping an ACE stoma open and I found this blurb:

" You should insert a catheter into the stoma each day to keep it open, even

if no washout is planned for that day. We will give you two sizes of

catheter, the size you will be using to do the washout and one a size

smaller. Alternatively, you can insert the small silicone plug into the

stoma.

The stoma can shrink a little after the operation, but this usually settles

down when you use the catheter. On rare occasions, the stoma may need

stretching while your child is under a general anaesthetic "

It sounds like so long as you insert the catheter while he is IP (even if

you are doing doing the enema), it should stay open without a problem. By

doing this, its probably unlikely to close. According to the second

paragraph, if it does get too small to use, it can be stretched. So, it

sounds like his stoma should be ok. My concern (more than the stoma) is his

bowel management. I woudl check with his GI/colorectal surgeon and/or MSCIC

for options during his IP stay.

Best wishes and speedy healing for his upcoming surgery.

Jenn

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> My son who is eleven is having tethered cord release surgery next week. He

> had his first one at six months and has not had one since then. He is

> quickly losing mobility in his left leg so it is time to go in again. He had

> the ACE procedure done about five years ago and it has been working

> wonderfully since then. It really changed his whole quality of life. He does

> the procedure on a nightly basis. My question is his NSG does not him doing

> this while in the hospital. My concern is if the stoma site starts to close.

> I was also wondering what any experience has been with the ACE post surgery.

> This part concerns me because it has worked so wonderfully. I would really

> appreciate any any advice. This is quite different with an older child now

> who get's everything that is going on. Any other wonderful tips you all may

> have for TCS post-op would be much appreciated!

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> Thanks so much,

> Anne

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