Re: URGENT--Having acute attack, need best doctor Jane[long post]

[Guest guest]

In a message dated 10/28/2002 5:00:30 PM Eastern Standard Time,

KarynWms@... writes:

>>>Healing requires in a complete change in lifestyle, diet, exercise, thoughts,

prayers, etc. Tell me a little more about your situation, symptoms.<<<

Hi Karyn,

Thanks for writing. I am in the Boston area actually. Your note is actually

the first positive thing I have read all day, in that you say...healing

requires... that is the first time I have heard anyone suggest actual healing

can occur. I read a website today with 10 people's stories that each one was

worse than the last. Shocking.

I have had a gallstone for many years. One large one, seen on ultrasound. I

was having maybe one or two trips to the ER for a few years and trying to

resolve it with diet and alternative treatment. I wanted to avoid surgery

and didn't think taking out the gallbladder was the best idea. I also felt

at risk for surgery, as I have been sick since 1980 and am quite disabled.

In the past year, I have had more problems. A number of trips to the ER from

April on. Very confusing time. In April went to the ER again and the same

story. But my upper abdominal pain felt like burning and worse when I was

hungry and my PCP did an H Pylori test that was positive so there was some

question that I had ulcers. But I didn't want to have the tests for it.

So I started going to alternative doc in July. She had me do food allergies

and I am allergic to 29 foods...and I have dysbiotic bowels and yeast

infection so she has been treating me for that. And I was rotating and

illiminating foods and taking probiotics. I was actually feeling better.

No pain. Less bloating. I was on pureed veggies and fruit for months and

started trying normal foods...and started to do pretty good. So for the

past 2 months I have been doing pretty good.

No pain, much less bloating, better stools [contipation mildly before], my

energy was coming back, I gained 5 pounds. I thought we were doing something

right. Then a week ago Saturday I ate a few things and ended up with the

same old pain. Upper abdomen, with a feeling of pain all around the rib

cage, right around the back. Went to the ER..pretty much the same story.

They think it is gallstone and think I should have it out.

I now think it is gallstone and NOT the H Pylori and ulcers, as this pain is

same as in the past and when the doc in the ER pushed into the lower right

rib, it was painful.

I got sent home with the advice to see my PCP and think about surgery. I

don't like my PCP. We have had a difference of opinion and I have been

seeing this alternative doc who has been ok but now I think is inadequate

for this problem.

So after the ER trip I tried getting back to eating without pain. Juicing

apples, dandelion greens/carrots, cukes, then pureed cooked veggies and

fruits w tsps of non fat yogurt and staying away from all fat and protein

foods. I was doing ok. NO pain for the most part all week, although still

plenty of upper abdominal bloat [maybe distension is a better word]. But

gradually doing better over the week. I don't know when I first noticed that

pain and swelling and discomfort was on the left rib cage.

I worried about so little protein as I lost 35 pounds the last time I had

this problem from Jan-April. So I looked up low fat protein online and on

Sunday, a week after trip to ER, I tried eating a small salad w romaine, 1/4

red pepper and 4 small shrimp [1/2g of fat] with a tsp of olive oil [5gm

fat] and lemon and garlic. I ate 1/2 of it and decided to go easy. It

always feels good going down when you are hungry, and it seemed to do ok the

rest of the afternoon. So since it did ok, I decided to do it again for

dinner. That was it, within a half hour I knew it wasn't working out well.

Only this time, the pain is under the left rib cage. And I had been noticing

twinges there lately and what seems like some swelling on that side. So it

is not just the fat, I don't understand why it shouldn't have worked. Well,

maybe it is the fat, as all week I have been pretty much fat free and having

the salad once did ok, but maybe twice...that adds up to about 11 gms of fat

over the course of the day. I thought the oil would help the gallbladder

empty. *sigh*

It didn't turn into full blown pain but plenty enough, so I stopped eating

and though I was uncomfortable, I took a sleeping pill and slept thru the

night and had no pain when I woke up. But as soon as I drank water, it was

pulsating. So I tried to sip water all morning and did ok, but not

completely comfortable. I have a supplement that I have been using for a few

months. I always worried about going too long without food. It is powdered

green barley juice. It has really helped me in the past few months. So I

tried like an 1/8 of a tsp mixed in a few mouthfuls of water, with the same

amt of powdered probiotic and sipped that. It started the pulsating again.

So I stopped it.

After the trip downstairs, I noticed how exhausted I felt and when I came

back to bed, I was sweating. Well all day, off and on, I have been sweating

for no reason. Just lying in bed I am sweating. I took my temp three times

and no temp. First time was 98.2, a half hour ago it was 97.2. I can't

tell you how abnormal this is for me. I NEVER sweat. I am always with hot

socks in my bed from cold. And it actually is sort of a cold sweat but not

with shivering at all. This has never happened before. This concerns me

more than the pain.

When I was in the ER last week, my WBC was 8.1, in April it was 6.5, my

amalyase was 92. in April it was 45. For some reason they didn't test the

lipase. But last time they did, in April and it was 160. My RBC although

normal, is lower than it has been before... 4.16. glucose was 92, BUN was

14, up from 2 back in April [after 4 weeks of barely eating], Creatinine was

0.9, the SGOT was low at 11, Bili Total was down to 0.6 from April [1.1].

In April, I had ketones in my urine. 80, which I looked up online and that

is considered high. I definitely was barely eating at the time and for

weeks, so it seemed explainable. They didn't do a urine this time in the ER,

so I haven't had that checked since April.

And that is all that seems applicable to this situation.

I don't know what to do for myself. I called some doctors today. One is

another alternative doc that I have been wanting to try. She actually spoke

to me and told me that one large stone is not amenable to dissolving or

flushing, which I already know. I never tried a flush as I was too afraid I

would get it stuck somewhere. She said I may have to have the gallbladder

out. She gave me the name of a surgeon.

I called and talked to him. He wanted me to call him in the morning and see

if there was any improvement. I told him about the sweating and the amalyase

WBC results. He thought the pancreatic involvement was only due to the

gallstone and that his plan would be to laproscopically remove the

gallbladder and let the pancreas return to normal on its own. He said I

would need to get back to eating before the surgery and if I couldn't do it

on my own, he would give me a muscle relaxer to see if I could eat without

the pain. He thinks the left side pain is referred and not really the

pancreas. Of course he wants to see me too.

I am not quite comfortable with that. He is a small town surgeon who is a

general surgeon. He said he does gallbladder surgery about once a day. I am

thinking maybe I should look for the BEST gallbladder surgeon and maybe I

will have a better chance. I also don't know if there is any chance I could

have something causing the pancreas to be involved, like a duct block or

inflamation. I called a Rhumatologist that has seen me before for

evaluation for Lupus, which he has determined on 3 occassions I don't have.

He is on the BEST DOCS in USA list, he is at the Brigham + Women in Boston.

So he is considered excellent, according to his peers.

He was out of town til Wed, but his secretary said in the past he has

referred people to a Gastro that is now at another hospital ..the Beth Israel

in Boston, so I called her and she will actually see me on Wednesday. So I

am thinking I should see her on Wednesday. I guess I am still not sure WHO

is the best for knowledge and experience with pancreas problems. I guess I

think the gallbladder is fairly common and lots of people can handle it, but

with some pancreatic involvement and unknown exactly how much or why, I think

I need an expert in that area. Neither of these docs seems to be expert with

that. I don't know too much about the Gastro.

I am afraid of laproscopic surgery after reading about greater risk of injury

to bile ducts and pancreatitis from that. I am also afraid of large surgery

as I am 138lb [i was 132 in June, down from 180 in January], I have been told

I have some COPD in my lungs, and I have known metabolic problems and can't

imagine surviving the surgery or recovering from it. Oh, and I also have

autoimmune component. I have a positive ANA. In April when I was in the ER,

my ANA was 1:2600. Highest I have ever tested. 600 was the highest I was

before that.

To tell you the truth I am afraid of any intervention at this point. And of

course I know I have to have some. After reading about all the problems with

the pancreas today and the tests that made it worse, and the surgeries and

gallbladder removal that didn't help, and actually some people who started

having stones in their pancreas after removal, I am really nervous. With me,

it has been my experience that if there is a 2% chance of a problem, I fall

into that 2%. I honestly don't believe I will survive surgery.

Oh, and I have even read up on those who had their pancreas removed and the

islet transplant and that they go on to eat with enzymes with every meal.

With my Autoimmunity, I can't imagine a pancreatic transplant [another option

in the end] and I have tried supplementing with digestive enzymes before and

although I can tolerate plant enzymes, when I tried the pancreatic enzymes,

after 3 weeks, I was instantly vomiting after every meal until I stopped

those. So that isn't a solution along the way either.

I started trying some fresh juiced granny smith apple juice about an hour

ago. I have had 3 sips, spaced 20 mins apart and although had some

pulsating, I seem to be tolerating that and hope to keep up the sips until I

finish the glass.

So aren't you glad you asked? :-) I am sorry for bombarding you with so

much information but I thought it might help to know what to say to me. I

think the fact that you are involved with the Pancreatic Assoc and you are a

nurse, I thought you probably had more expertise than most, so I hope you

don't mind me running it all by you. Please, if it is all more than you can

comment on, I completely understand.

I tried to write quickly..ha ha...so I might reach you this evening, but if

not, maybe in the morning.

Thank you very much,

Jane