another interesting day

[Guest guest]

My e-mails were bouncing so I may have missed some posts. Tuesday was yet,

again an interesting day. I had the colonoscopy done by my GI. My pcp had

wanted it done because I'd had bouts of rectal bleeding off and on for some

time. Also, my grandmother had colon cancer. The colonoscopy was already

scheduled prior to the ERCP I had done a couple of weeks ago when the stent was

placed in the bile duct. When the GI dismissed from the hospital after the

ERCP/stent, he said he wanted to see me in a couple of weeks. I told him about

the colonoscopy being scheduled and he said that would be great, he would talk

to me before they drugged me. He comes in to talk to me. The first thing he

says is " Now why are we doing this? " (the colonoscopy) I told him my pcp wanted

it done because of rectal bleeding. Just the way the GI asked the question

seemed as if he was in a pissy mood and that I was some idiot just wanted them

to torture me with tests and procedures. He simply said okay when I told him

the pcp wanted it done. I then told him that my new pcp wanted to know why a

liver biopsy had not been done. The GI said, " your liver is not the problem " .

I said, " okay, so do you agree with my surgeon that it is the bile duct and that

cutting it will solve things? " He smart-assedly says, " No, I think the problem

is adhesions from your other surgeries. " I asked him what was the game plan

then. He said, " well you are going to need surgery to take a look. " I said,

" okay, that sounds like a plan. I guess Dr. DeWitt (my surgeon) can go on and

repair the hernia at the same time since that needs to be done anyway. " The GI

said, " Yeah and he could also go on and do a liver biopsy during surgery just to

make sure. " I said, " Okay - that's what we'll do then. " The GI did the

colonoscopy and as I suspected, there was nothing out of the ordinary. He told

my mom I have some bleeding hemorhoids. He also told my mom he was going to

contact my surgeon and said he had his number in his pocket. I woke up from the

colonoscopy with no problems - no nausea, no pain. A good day. I had a little

juice and then got up to get dressed and go home. Just as I was finishing

dressing, I was hit with the same horrendous pain under my right rib. My mom

called the nurse and asked her to contact my GI. I laid there for an hour and a

half in excrutiating pain while they paged my GI. He never called the hospital.

Finally, I told my mom I just wanted to go. I had lortab in my purse. I

figured I would take that, call my surgeon, and tell him to put me in the

hospital, do surgery, and whatever else it takes to make me better. I get the

surgeon's office on the phone. They put me on hold forever because my surgeon

was talking with the GI. The surgeon finally gets on the phone with me. He

tells me that the GI says I need to have a liver biopsy and that I need surgery

done by a biliary specialist. The GI told the surgeon the best surgeons for me

would be in Indiana. My surgeon said he was really afraid that him doing

surgery might cause me more harm than good. He told me to take as much pain med

as I needed to get comfortable and just try to rest. He said he wanted me to

think this all over and he would talk to me the next day (today). I was in

horrible pain (even after a lortab 10) for the hour ride home. As soon as I got

home I took two mepergans. Just as I took them, my sis-in-law called to check

on me. I was crying because I was in such terrible pain. I told her the story

and she insisted that I call the new internal med doc (my new pcp) I had seen on

Monday. She said I needed to go to the ER in his town (35 minutes away). I

called him and he called me back. He said I definitely needed to get to the ER.

He said he agreed with the GI and surgeon that I need a biliary specialist and

that I need a liver biopsy. It was 3 p.m. when the pain first started. It's

now almost 6 p.m. and the pain had not let up. My mom and stepdad take me to

the ER in Huntsville. I sat in the lobby until 11 p.m. in the most horrible

pain I've had in my life. This was by far the worst episode ever. Finally at

around 11 p.m. they got me in a room. They gave me a shot of demerol/phenergan

around midnight. They tried six times and never could start an IV. They were

barely even able to get blood. The first doc was a real ass. He said he had

pulled my records from 2000 when I had these episodes before (I hadn't been to

this hospital with the recent episodes since none of my docs were in this town

til I switched to the new internal med doc). He told my husband and I that they

weren't ever really sure the pancreas was the problem back in 2000 since the

panc enzymes weren't elevated most times and that they never really found a

cause for my pain. I told him the abbreviated version of the latest episodes

and told him the lipase was 1960 in July when this began again. I said, I guess

you'd say that was elevated, wouldn't you? He admitted it was. Anyway, at 2:30

a.m. a different doc came in. She was at least nice. She told me they just

really didn't know what was causing my pain. She said my panc enzymes were

normal, and only one of the liver enzymes was slightly elevated. By this time,

my pain had diminished and I even slept for a while after the shot they gave me

at midnight. She asked me if my pain was under control enough for me to go

home. I told her it was and we left. I was in the most horrible pain of my life

for over 9 hours. Breathing, talking, the slightest movement made the pain

escalate to the point of making me scream. I have never had an episode like the

one I had Tuesday afternoon/night. I really do not get how I could have such

horrendous pain and yet have the labs basically normal.

I called my new pcp's (internal med doc) office to let them know what had gone

on in the ER. He wants to see me tomorrow at 10:30 a.m. Today I am much, much

better. I am taking pain med regularly. Certain movements still cause pain and

taking a deep breat increases my pain. Other than that, the pain med is keeping

it to a tolerable dull ache. I have not heard from the surgeon today. I'm not

going to call him but will talk to him if he calls me. My sis-in-law thinks I

need to let my new pcp doc make the decisions on where we go from here. I have

to say I am inclined to agree for now. Yesterday, I was in such pain, I would

have let a horse do surgery on me if they said it would help. I was definitely

not thinking rationally.

If I had been thinking rationally, I would have asked the surgeon why the GI all

of a sudden (in a matter of only 2-3 hours) changed his mind and decided I

definitely need a liver biopsy. I would have also asked why I need to see a

biliary specialist if the problem is adhesions from previous surgeries. By the

way, the only abdominal surgeries I've had are gallbladder in 1998 (18 mos.

before first panc attack) and the gastric bypass in Dec 2001.

I am so incredibly frustrated. My mother, stepfather, husband, sis-in-law, and

sister all were at the ER with me last night. My sister had tears in her eyes

when she looked at me and saw that I was obviously in bad shape (pain wise). My

sister told me today that when she put her hand on my husband's arm he had tears

in his eyes. This is tearing my family apart. They are all so worried about

me. In a way, what I am putting them through is worse than any of the pain I am

going through. I hate myself for causing them such pain and worry over me. I

know I'm not doing it on purpose but I feel so terrible for doing this to them.

They want so bad to help me but there is nothing they can do for me.

I do know one thing. I told my husband the only way I will go to the ER we went

to last night would be if I were dead. He agreed. He said he will never again

allow me to go through what I did last night. In retrospect, my new doc also

goes to another smaller hospital in the same town. My sis-in-law says we really

should have gone there. She apologised and said she wasn't thinking clearly

since her main experience has been with heart issues and you definitely need to

be at the bigger hospital for a heart attack.

My new pcp is leaning toward thinking my problem may really be autoimmune liver

disease (commonly known as primary biliary cirrhosis or sclerosing cholangitis).

It's a disease that essentially clogs all the bile ducts and then leads to

cirrhosis of the liver if not caught and treated early enough. A liver biopsy

provides a definitive diagnosis for this. In looking up info on the internet, I

can certainly see why the new pcp would suspect this. He told me he had another

female patient with symptoms and labs very similar to mine and that is what she

ended up having. When I read about this disorder it doesn't say anything about

it causing elevated panc enzymes, but I guess if the common bile duct is backed

up from becoming sclerosed, it could irritate the panc and cause the enzymes to

rise. Maybe that is why I have only had 3 documented incidents of the panc

enzymes being elevated.

Anyway, I am sure my new pcp will set me up for a liver biopsy when I see him

tomorrow. Maybe I'll soon have answers or at least know what I don't have.