colon motility tests and/or cecostomy

[Guest guest]

Hi all,

I'd just like to hear more of any of your experiences with the colon motility

tests and/or a cecostomy (a C-tube that is put in at the top of the intestines

to allow a flush of water to go in and move poop out).

Asher is scheduled for the colon motility test at Tufts in February b/c of, what

we believe to be, severe colon dysmotility. We've been told by the motility doc

up there who sees a lot of patients with mito that we are probably looking at

Asher having to have a cecostomy or continuing with the laxative/enemas which

are making him very upset. The zelnorm has not worked at all.

Any and all info is appreciated.

Thanks,

Anne R mom to Asher (almost 4! - complex III defect, possible complex I defect)

[Guest guest]

Hi all,

I'd just like to hear more of any of your experiences with the colon motility

tests and/or a cecostomy (a C-tube that is put in at the top of the intestines

to allow a flush of water to go in and move poop out).

Asher is scheduled for the colon motility test at Tufts in February b/c of, what

we believe to be, severe colon dysmotility. We've been told by the motility doc

up there who sees a lot of patients with mito that we are probably looking at

Asher having to have a cecostomy or continuing with the laxative/enemas which

are making him very upset. The zelnorm has not worked at all.

Any and all info is appreciated.

Thanks,

Anne R mom to Asher (almost 4! - complex III defect, possible complex I defect)

[Guest guest]

Anne,

Have you tried mestinon at all? It is a medication

that is normally prescribed for myasthena gravis.

Lucas has severe dismotility also and that as well as

daily MOM (original 30 cc's every one to two days and

now 1 tsp daily) has done very well for him. We stated

that now long after miralax, bethanacol and glycerin

suppositories no longer were effective. In addition,

Lucas' synthroid was increased because he became more

hypothyroid. Just a thought. HTH, Loriann

--- AReckling@... wrote:

>

> Hi all,

>

> I'd just like to hear more of any of your

> experiences with the colon motility tests and/or a

> cecostomy (a C-tube that is put in at the top of the

> intestines to allow a flush of water to go in and

> move poop out).

>

> Asher is scheduled for the colon motility test at

> Tufts in February b/c of, what we believe to be,

> severe colon dysmotility. We've been told by the

> motility doc up there who sees a lot of patients

> with mito that we are probably looking at Asher

> having to have a cecostomy or continuing with the

> laxative/enemas which are making him very upset. The

> zelnorm has not worked at all.

>

> Any and all info is appreciated.

>

> Thanks,

> Anne R mom to Asher (almost 4! - complex III defect,

> possible complex I defect)

>

>

>

[Guest guest]

Anne,

Have you tried mestinon at all? It is a medication

that is normally prescribed for myasthena gravis.

Lucas has severe dismotility also and that as well as

daily MOM (original 30 cc's every one to two days and

now 1 tsp daily) has done very well for him. We stated

that now long after miralax, bethanacol and glycerin

suppositories no longer were effective. In addition,

Lucas' synthroid was increased because he became more

hypothyroid. Just a thought. HTH, Loriann

--- AReckling@... wrote:

>

> Hi all,

>

> I'd just like to hear more of any of your

> experiences with the colon motility tests and/or a

> cecostomy (a C-tube that is put in at the top of the

> intestines to allow a flush of water to go in and

> move poop out).

>

> Asher is scheduled for the colon motility test at

> Tufts in February b/c of, what we believe to be,

> severe colon dysmotility. We've been told by the

> motility doc up there who sees a lot of patients

> with mito that we are probably looking at Asher

> having to have a cecostomy or continuing with the

> laxative/enemas which are making him very upset. The

> zelnorm has not worked at all.

>

> Any and all info is appreciated.

>

> Thanks,

> Anne R mom to Asher (almost 4! - complex III defect,

> possible complex I defect)

>

>

>