MACE procedure for pseudo-obstruction?

spasman · Post by **spasman** » 2008-06-10 13:16:11

I have symtoms who seems like pseudo-obstruction.

Gas rarely move and i'm stuck most of the time with no appetite and obstruction feeling etc...

I have a terrible time getting a proper diagnosis(motility+gas).

Would you go for a MACE or continue bowel testing to no avail?

spasman · Post by **spasman** » 2008-06-20 20:15:29

Here a pic:

Rosemort2004 · Post by **Rosemort2004** » 2008-06-20 23:59:21

Having a MACE doesn't mean that you can't continue testing and looking for answers. Whether it will work or not is debateable though. Do rectal enemas work? If they do then that is a good indication that a MACE will. If they don't then it may still work as you're flushing from the top of the colon so it's more effective.
I do know they are not always effective for psuedo obstruction, but everyones different and maybe it's worth it even for some improvement. It's not as major a surgery as a colostomy and it's reversible so you may feel it's worth the risk, to give it a try.
Bear in mind that if you do do it, it often it does take about a month to get it all up and running really well and perfect your recipe.So don't be dissappointed if you don't get a great result straight away.

Rosemary
NZ

spasman · Post by **spasman** » 2008-06-21 00:19:13

Hi Rosemary.

I haven't been diagnose with pseudo-obstruction yet.

Thanks

Rosemort2004 · Post by **Rosemort2004** » 2008-06-21 01:54:14

If you don't mind me asking, what is the history? Is this a problems since birth, childhood or more recently? what sort of testing have you had and what do the dr's think? What do they think about a MACE?

R

spasman · Post by **spasman** » 2008-06-21 04:14:37

I have IBS-C or mixte + obstructed defecation syndrom.

GAS ++

Most doctors don't know about MACE.

Rosemort2004 · Post by **Rosemort2004** » 2008-06-21 04:49:02

MACE/ACE's are more common amongst pediatric patients so that may be why you're not finding so many drs familiar with them. My daughter has one, she is 13.
They are really good for incontinence either caused by severe constipation (which can be the result of a number of different sorts of congenital conditions) or hypermotility. In both cases the benefit is that they empty the colon completely and keep it that way for the following 24 hrs.
How that would work out for your issues with gas etc i don't really know.
I have not heard of MACE's being used for IBS patients.

R

spasman · Post by **spasman** » 2008-06-21 20:28:59

WELL,since this is a reversible surgery,i agree with you that i can try it.I don't have many option,it is a MACE or resection.

Like you said,the gas i have all the time migth need extra irrigation.

I would like to have phone number(s) of american surgeon(s) that do MACE.

Rosemort2004 · Post by **Rosemort2004** » 2008-06-21 23:11:42

We are not in USA and the only US surgeons I know that do them are pediatric surgeons. Maybe one of the adults on here might have someone they can recommend.

R

spasman · Post by **spasman** » 2008-06-22 00:24:18

Rose,what is your recipes and your story on how you end up with the MACE solution?

Rosemort2004 · Post by **Rosemort2004** » 2008-06-22 02:46:11

It's my daughter that has the M/ACE. She has Neuronal intestinal dysplasia and without the ACE she doesn't have enough motility to go by herself. She got the ACE 3 years ago when the very strong laxatives she'd been on up till then stopped working.
The recipe is the washout/flush solution that you put through the ACE. For her it requires a very strong mix, but some (not many!) get away with just saline. Her recipe is currently 500mls saline, 40mls glycerine and 1 bisalax. Most have a recipe somewhere in between those two in strength.

R

spasman · Post by **spasman** » 2008-06-22 16:13:15

What is the trouble(s) with irrigation?

Do you lose electrolyte or get dehydrated?

Rosemort2004 · Post by **Rosemort2004** » 2008-06-22 18:13:59

It depends how strong the recipe is. If you are using something fairly mild like saline or saline and a small amount of glycerine it's not usually a problem. With the very strong recipes you do have to be careful to keep hydrated. You can also get some nausea occassionally during the flush/irrigation particularly if you're using a lot of glycerine.
We haven't had any problems with electrolytes, though it is a possibility.
Another issue with the irrigations/flushes is that they can take an hour or so for everything to come through. Some people are lucky and do get a much faster result but an hour is not unusual. There's no way of knowing in advance if you're going to be one of the lucky ones or not. So you are potentially sitting on the toilet for an hour every day doing the flush.

R

spasman · Post by **spasman** » 2008-07-05 19:19:20

I don't have any objection siting on the toilet an hour per day.

At least i could do something else the rest of the day.

sheri, Cameron's mom · Post by **sheri, Cameron's mom** » 2008-07-13 13:01:40

My son has an ACE Malone for Imperforate Anus. He does very well with it, he has a recipe of 600 ml saline, 9 ml glycerine, 1/2 adult fleet.

Our surgeon in the US often works with young adults or might at least refer you to another surgeon. They have a colorectal center... http://www.cincinnatichildrens.org/svc/ ... efault.htm

Also, the doctor who invented the chait cecosotomy is from Canada http://www.cecostomy.com/Introduction/authors.htm, maybe he can help.

Sheri - mom to Cameron 6 w/VACTERL (HIA, etc), has an ACE Malone