Had my GI appt yesterday...from Adam

[Guest guest]

Hi,

Went to the GI appt late yesterday afternoon. Very disappointing,

but not unexpected. The doctor spent the first 15 minutes

questioning me on my mito diagnosis, seemingly trying to confirm

whether I had one or not. He seemed satisfied at that point, then 15

minutes into the appt, he asked me if I had ever had counseling or

been on antidepressants. Why? Because he thought people as sick as I

am can sometimes have depression as a secondary diagnosis and taking

the antidepressants sometimes can help move the gut more. Of course,

when I first became ill, I had to put up with early attempts of

doctors to attribute my fatigue and increasing symptoms to

depression, so I have no patience for doctors who show any similar

tendency. I had to really concentrate to get past this question and

get the appt back on track.

Of course, this early in the appt, he really hadn't even touched the

surface of my history or why I was there. I explained to him how

much trouble I have had with meds and that I try to take as few as

possible and that was the end of the antidepressants discussion.

I told him that I thought I was at the point of facing never being

able to eat food again and having to be on a central line the rest of

my life and I was there to get answers to that question. He basically

danced around answering that question directly. He reviewed my

records, and noting that my gastric emptying study was abnormal, and

that I had mito, his response was that there were really no solutions

for me. He didn't think any of the meds used for dysmotility would

help me.

I talked to him about the sphincter of oddi, and the ERCP that was

recommended to me. He agreed with my decision not to have it done.

He said it was very risky and that he didn't think having the

sphincterotomy would help me. He said he gave it a 25% chance of

resolving my symptoms. He felt I would still have pain because he

thought it was due to the dysmotility.

He right away wanted to make sure I understood that he was so busy

and couldn't really follow me. He wouldn't be able to set up tests

or monitor test results and could only consult. He could try to make

a follow up appt. We checked on the way out and it would be 6 months

before I could get one. I wish he had just closed his practice and I

wouldn't have waited 5 months for him to tell me that.

His only suggestions were that I might consider having a repeat

endoscopy and take numerous biopsies of the small intestines. One for

sprue, and for lots of other things, but what I didn't

understand. He did not suggest any other motility studies of my

small intestine, which surprised me.

I asked him about what I should do about eating. Whether I should

continue to attempt solid food and he said he didn't see any reason

to. He said I should drink Ensure and very excitedly said you can

live on that you know. *sigh* Well, I said I wasn't sure I would

tolerate it. To me Ensure is like a big bottle of synthetic vitamins

in a milk base. Someone else on the list told me that you have to

take about 6 cans of that a day to get the benefit. I am not able to

tolerate more than 2 servings of a milk drink now, and it has to be

spaced out from morning to night to do that. And that is when it

isn't full of vitamins. I asked him if Ensure had fat in it and he

said yes. I told him I wasn't tolerating fat either. He just gave

me a blank look. He was rushing all through the appt, as he was 40

minutes behind schedule and had another appt after me and it was

already 5pm.

I asked him for ideas of who I could go to in the Boston area that

could address these problems and he had no suggestions except to go

to the GI dept at NEMC since my mito specialist is there. I told him

I had already had contact with the group and since they were very

casually pushing me to have the ERCP, when I considered it something

that would hurt rather than help, I was not inclined to go there.

He said he would write a letter to Dr Korson and let him know what

his recommendations were and I asked if while he was doing that if he

thought of anyone else I could see, he could suggest it. And that

was it!

So the whole appointment was pretty deflating and I am pretty worn

out today, so I am going to rest. I have more input on other

subjects on the list, but too tired to add my two cents today. :-)

Later...

:-)

ADam