first visit with gastroenterologist MD tomorrow, need suggestions, sorry, long

[Guest guest]

Tomorrow I finally see the gastroenterologist for my Crohn's. I'm in a

particularly bad flare-up. This flare started in early July and I’ve

been seeing my Internist, pain management doctor, cardiologist and the

gastro doctor’s nurse practitioner but not the gastroenterologist.

The pain goes from a constant 5 plus to 10 to the nth every day. Fifty

milligrams of Tramadol, four a day, is not giving any coverage but it

is better than a handful of Tylenol.

They aren’t permitting me to see the doctor in the practice whom I

have confidence in and a rapport , only this one. This is the only

gastroenterology practice for about 150 miles plus and going out of

town is not an option.

This doctor saw me in SICU when I had a gastric hemorrhage and he is

extremely brusque, irritated and short-tempered. When he saw me, I

wasn’t allowed to get out one sentence before he ran over what I was

trying to say.

In the hospital his first visit went like this:

“I am Doctor Blank. You have had an epigastric hemorrhage. This is why

you had coffee grounds vomit. "

Point in fact; when the EMT’s brought me in, I was vomiting what the

convenient care doctor and ER doctor said looked like slabs of raw

liver. By the time the gastroenterologist got there, it did look like

coffee grounds because I had already vomited up most of the blood from

the hemorrhage.

He then turned around and left before my husband, son or I could say anything.

He did nothing. No EGD, no colonoscopy, no CT scan, nothing.

Neither did he bother telling me that I had Crohn’s, which another

doctor in his practice had diagnosed in 2006 after EGD, colonoscopy,

CT scans, et al. His nurse practitioner was the one who actually told

me about the Crohn’s in 2011, and started me on Asacol. My Internist

is the one who has me on a couple dozen other heart and gut drugs.

At $450 a visit, I expect a little more for my money than a doctor who

will “give” me 15 seconds of his time and gets all of his information

second or third hand. I have asked to be assigned the other doctor but

they refused and this practice is the only game in town or for about

150 miles.

Therefore it looks like I have to adapt to his style and I’m uncertain

how to accomplish this. I’m very uncomfortable with this doctor and

honestly he frightens me.

I'm hope that I have not gained weight, as this is how they decide I

am getting better. Since I can now barely walk and my body tends to

hold onto every calorie it gets, it doesn't take more than a couple of

hundred calories a day to make me start gaining weight again.

The heart problems tend to make me retain a lot of fluid, but the

nurse practitioner didn't listen to that. (Heart failure and

microvessel something) I'm forcing about 700 daily calories of fat

free, sugar free, protein shakes down, which is good. The last time I

was in this shape, I developed beriberi and other nutritional diseases

and the pain management doctor called me " severely malnourished, " so

for me the protein shakes and vitamins are better than TPN in the

hospital.

Food wise, I .can eat a quarter cup of cooked grits every day and

that's about it. I've lost 50 pounds since this started in July but

since I'm still fat, that is all they seem to see.

Ideally, I’d like him to see me as a human being worthy of respect and

a decent level of care, and for him to actually hear what I say and

respond to that, not just his assumptions of what I am feeling or what

is going on.

I know that I will have to frame everything I say very carefully and

as succinctly as possible, but how? What do I say to him which he will

actually hear? How to I tell this man that the pain at night is more

than I can take? How to I get through to him?

Suggestions,please! I do realize that their practice will not give

pain medicine and God knows I don't like having to take them but this

is a quality of life issue. I'm 62 and need to function in order to

get things arranged. That said, there are a number of options other

than a few Asacol to treat the Crohn's.

Will check back in with you folks later since I really need to go lay back down.

Jeanne B in GA