Need a Good Motility gastro

[Guest guest]

As you know I had some really unpleasant lower gastro testing done last week

while at Cleveland Clinic. I thought the doc. I was seeing was top in the

field and would be able to help me. Well after numerous phone calls to get the

results from my tests he called personally late this afternoon with NO help

at all. He spoke so non-chalantly about the whole thing. He said that my

colonic transit study and manometry were abnormal and that my muscles just do

not

work. He said the key is just to get things as liquified as possible but that

there isn't really anything to do about the prob except removing my colon

and giving me an ileostomy. I just don't think that will solve the prob. I have

dysmotility in my stomach and most likely my small bowel as well. Nothing is

moving right now and I am distending and miserable. I need a gastro who is

good with motility and can think out of the box and really try and help his/her

patients. I know there has to be other options to try whether it be

Propulsid, NT3 Inections, IV anti-cholinergic's, etc.

Please help! Thank you!

[Guest guest]

I can't remember if you are one of the ones who can't take CoQ10. The only

thing that worked for me was getting the dose of CoQ high enough. I thought

I would forever be miserable because of dysmotility. It might be worth a try

if you aren't already over a thousand milligrams.

I would think that a J and or G tube would be a better option than the

removal of the colon. I have no experience with this, but there are others

who have that might be of help to you.

I'll be thinking about you.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Tue, 13 Apr 2004 18:47:09 EDT

> To: tpnsupport , mito ,

>

> Subject: Need a Good Motility gastro

>

> As you know I had some really unpleasant lower gastro testing done last week

> while at Cleveland Clinic. I thought the doc. I was seeing was top in the

> field and would be able to help me. Well after numerous phone calls to get

> the

> results from my tests he called personally late this afternoon with NO help

> at all. He spoke so non-chalantly about the whole thing. He said that my

> colonic transit study and manometry were abnormal and that my muscles just do

> not

> work. He said the key is just to get things as liquified as possible but that

> there isn't really anything to do about the prob except removing my colon

> and giving me an ileostomy. I just don't think that will solve the prob. I

> have

> dysmotility in my stomach and most likely my small bowel as well. Nothing is

> moving right now and I am distending and miserable. I need a gastro who is

> good with motility and can think out of the box and really try and help

> his/her

> patients. I know there has to be other options to try whether it be

> Propulsid, NT3 Inections, IV anti-cholinergic's, etc.

> Please help! Thank you!

>

>

>

[Guest guest]

Hi, ,

Gosh, I thought you would be getting somewhere with your motility

problems by now....More and more, I believe the key to good care is to

find somehow a physician who is " engaged, " someone who almost puts

himself or herself in the position of the patient. The elusive Golden

Rule.

I am sorry that this CCF doc sounded so nonchalant with you. You are too

young to be considering such drastic, surgical " solutions. " That is, of

course IMHO.

I am still in the testing portion of my gastroparesis problems, which

have been increasing. The hospital which I use is at present the only

one in New York City that does the new gastric pacing surgery. My endo

told me last week that the results are very favorable.

However, my hypothyroidism is progressing (and this can cause great

motility probs. Do you possibly have this condition, also?), so the endo

is increasing the thyroid med for the third time. He also is going to

give me a patch (I couldn't hear the name of it over the phone because

of my worsening hearing). Maybe you already know about this. It is an

anti-hypertensive medicine that you wear, over the stomach, I presume,

and he said that it stimulates receptors in the stomach that will help

it move. I am hoping that this will help. I have had problems in the

past with adhesives: redness and blistering.

I also keep having a problem with low magnesium, they said from

malabsorption from the gastroparesis. This can also, of course, cause

muscle cramps. Have they checked you out for electrolyte imbalances?

Since last October, I have been seen by a wonderful gastroenterologist

at the same hospital. He is extremely gentle and compassionate, and

very, very thorough. He spends all the time you need, in person, and on

the phone. He really cares about his patients.

The wonderful lady neuro sent me to him, and guaranteed I would like

him, and, boy, was she right. I wish you were closer to NY. You would be

in the hands of docs who really, really care. As I have said before, I

am in the best position I have ever been in, doctor-wise. (But as my

husband warns, none of them is young-in their 60's. I hope they don't

retire!)

On our list, Celia from Canada is a wealth of information about gp.

Perhaps she will have some suggestions for you.

Have they suggested the gastric pacemaker for you, or does the slowness

of the rest of the tract rule it out?

Please don't give up,. I know with mito you can get some bad

spells, and then be a bit better. My neuro (who was my nurse in 1971

when I had knee surgery!) said that digestive probs seem to peak in the

spring, for some unknown reason.

BTW, Propulsid used to work for me, but these docs think it is a very

dangerous drug. Erhythromycin (sp?) has been suggested, but I won't take

it because of its known ototoxicity. Have you tried that?

I hope you will feel better. I know when the gp is at its height, I do

try to rely on liquids only, and this seems to help. Try a trial of

various foods. But you have probably done this already, a million times.

Please keep us posted.

All the best.

Sincerely,

[Guest guest]

Laurie,

I can take CoQ10. I'm taking 300-400 mg's daily. That is the dose that

Dr.Cohen has put me on. Is it ok to just increase it that much?

Thanks for your idea,

[Guest guest]

,

Thank you for your support and ideas. Unfortunately I think every avenue you

mentioned has been tried and/or ruled out. I wish I lived close to the New

England states in general, but my dad won't make the move. It seems like there

are some really good health care providers on that side of the country. I'm

on TPN now so my electrolytes are right on, I've just had my thyroid checked

again and it was normal, I've tried E-mycin but couldn't tolerate it, none of

my doc's will try me on Propulsid even after my thorough heart work-up, I'm

not a candidate for the gastri pacemaker because of the dysmotility thru-out

my GI tract, and diet doesn't seem to have an affect on me due to it just

being the muscles not working.

I've not lost hope. I'm actually one to fight harder for help and answers

when I'm suffering more. I've found 2 new things that are in clinical trials

that I'm going to keep pushing for and see if I can try them. One is NT3

injections. Given I believe every 3 days subq it speeds up colonic transit time.

Sounds promising to me.

I'm really happy for you that you DO have such caring and intelligent docs.

You keep me posted if you hear of anything new and I'll do the same.

Thanks again,

[Guest guest]

Laurie,

I've got a list of questions for Dr. Cohen so I will just add the CoQ10

question.

Thanks again,

[Guest guest]

My MDA doctor increased it to this level, because research being done with

Parkinson's patients indicated that the CoQ needed to be at around 1200 to

be really affective. When I had increased it and got such a dramatic change

in my dysmotility, Dr. Cohen said that they had probably been undertreating

with CoQ10.

You might want to e-mail Dr. Cohen and ask him if it would be okay to

gradually increase the CoQ10 to see if it would help your dysmotility. I

would suggest doing it gradually as you might see results before getting as

high as I am. You don't want the opposite problem.

laurie

> From: LILQT4U1984@...

> Reply-To:

> Date: Wed, 14 Apr 2004 05:45:12 EDT

> To:

> Subject: Re: Need a Good Motility gastro

>

> Laurie,

> I can take CoQ10. I'm taking 300-400 mg's daily. That is the dose that

> Dr.Cohen has put me on. Is it ok to just increase it that much?

> Thanks for your idea,

>

>

>

>