Re: Maybe it's just me!

[Guest guest]

Heidi,

I'm just now getting your e-mail. Our computer keeps shutting itself off and

then won't turn back on for a bit. We thought it was the power strip/surge

protector but replaced that and that's not it. Hubby thinks there may just be

a lot of dust in the cpu causing it to overheat. He's going to take the cover

off today and see what the deal is. so, even though the computer works for a

while, it's a pain in the butt as you have to unplug it, plug it in, etc.

often several times to get it to turn back on. We have the laptop with a

wireless connection but it hurts my wrists more to type on it. Also I don't

have my e-mail set to go to MS outlook on the laptop so I don't like the e-

mail as much. Anyway, thanks for your post. It just goes to show that you

can never know what a doctor's response is going to be. I had a very

disappointing and honestly upsetting appt with the surgeon that I had high

hopes might be able to help me. I think I told about the upcoming appt. The

surgeon specializes in 'cancer and benign disorders of the liver, pancreas,

biliary system, and gallbladder'. He did a whipple on my sis-in-law's friend

with pancreatic cancer. They were all quite impressed with him. My appt was

Wed. He's in Birmingham, AL, 100 miles south of me. My mom went with me just

to keep me company. I had records from my internal med doc who is my pcp.

they were obviously a couple of inches thick. I had prepared a two page list

that summarized my acute panc attacks, ERCPs I've had, and abdominal surgeries

I've had. I also gave him my standard spreadsheet with all my meds, doctors

names/addresses, allergies, medical conditions, and surgeries. He walked in,

introduced himself, took the pack of records and the info I had prepared. He

was gone for about 20 minutes and then came back. He said he didn't believe

SOD was my problem. I can't remember the reason. He said that he didn't

think there was anything mechanical going on and that he didn't think there

was anything that could be done surgically to help me. He told me that he was

sure he knew what was at the root of all my problems. I was then hopeful for

all of about two seconds. He told me that he felt lupus was causing the

pancreatitis and all of my other GI problems. He then brings in this huge

medical book where it tells about all the things lupus can do and shows me

where it says 45% of people with lupus have GI problems. I already knew

this. However, if you lump all GI problems together, my guess is that pretty

close to 45% of the general population have some sort of GI problem(s). Yes,

lupus can cause pancreatitis and maybe it is what has caused it in my case but

the combination of lupus and chronic pancreatitis is not very common. Also,

my rheumy that I had back in 2000 when the acute panc started was insistent

that lupus was not causing the attacks. My current rheumy also does not think

it is lupus. My previous and current GI don't think it's caused by lupus. My

pcp does think that the pancreatitis is somehow related to all the autoimmune

diseases I have so I guess in a sense, you could say he thinks it's lupus at

the root.

The surgeon then asked me if I had family with me and I told him my mom was

with me. He told me he was going to have the nurse get her. I'm sitting

there thinking maybe he's going to tell me something really horrible. I

couldn't for the life of me think of why he wanted my family in the exam room

with me. He finally comes back and he tells me that I am on way too many

medications and starts going through the list. He told me that there was no

reason for me to be on lasix. I am on a lot, 80 mg in the morning and 40 mg

at 2 p.m. He had first tried to say the lasix was causing the cp. However, I

was not on lasix when the panc attacks started in 2000, nor was I on it when

the attacks started back in 2002. He told me that I had to totally get off of

all narcotic pain med. He told me that I was on a dangerous amount of

morphine. I take MS Contin 30 mg 3 times a day. He said that's what they

give people who are dying from cancer. My mom asked him what should I do to

control my pain. He said I should only take pain medicine when I am having

pain and that I should take something like ultram that's not narcotic. I

didn't bother telling him that I have pain 24 hours a day/7 days a week. I

was pretty much in shock. He told me that I was going to need professional

help to get off the MS Contin and it would probably take me over a year to get

off of it. I told him I had been under the care of a pain mgmt physician for

over 2 years - at my request. He basically said there was no reason for me to

be taking pain medication on a regular basis. He said that the morphine was

making all my GI problems worse because it totally shuts down the GI system.

Again my mom asked what was I supposed to do to control the pain. He gave the

same answer - take something like ultram when I have pain. He then looks over

a few other meds and says 'actigall - I don't what that's for but it's not

necessary'. I told him my GI put me on it because he feels part of my problem

is that the bile doesn't flow as it should and actigall thins the bile. He

didn't respond, just said that I needed to be on the lowest dose of medication

that would get my lupus under better control, get off narcotic pain meds

completely, quit taking most of the medications I'm taking, and then I'd be

fine.

I mostly just sat there listening to him. It immediately dawned on me that he

wanted my mom in the room so he could tell her that I was 'addicted' (yes, he

said addicted - not physically dependent) to the pain meds and that I

needed 'professional help' to get off the pain meds!

I left feeling like I must just have mental problems or be some kind of wimp.

My first impulse was that I'd just totally quit taking any medications (of

course tapering the MS Contin and oxy IR - not stopping cold turkey). I'm

just so sick of the whole thing. As for the pain meds, I follow my pain doc's

rules to a tee. My mother, bless her heart, was telling me the whole way home

that she trusted me and my pain doc (he's also her doc - she doesn't get pain

med from him, just pain blocks when her back flares up) to do what is right.

She told me that he would not just give me drugs if he didn't feel I needed

them as his license would be on the line.

I called my rheumy and told them that the surgeon said I needed to be on meds

to control my lupus better, such as being back on the immunosuppressant,

imuran. My rheumy's nurse called me back immediately and she said no way

would she be okay with that because I still had attacks when I was on the

imuran. Personally, I do think the Imuran helped some because I have had more

attacks since stopping it the beginning of July. My rheumy wants another

rheumy's opinion so they are sending me to yet another doctor.

I also made an appt to actually talk to my pain doc about maybe switching to a

different pain med other than the MS Contin. I do know all narcotics slow

down the GI tract - that's the nature of the beast. However, according to the

surgeon - morphine is the worst. He said that the diarrhea meds, immodium and

lomotil, are morphine with the narcotic part taken out. So, maybe duragesic

or something like that might be better.

I have also decided that I want to quit taking the lasix since it doesn't seem

to be working much anyway. I'm going to just take it as needed when I can

really tell that I have a lot of edema. Lately, I haven't been having a lot

of edema in my extremities. It is my belly that is just huge. I showed the

surgeon pictures of me prior to my gastric bypass and then some pics along the

way. My belly is larger now than it was when I weighed 260 lbs.

Oh, the one good thing that came from my appt with the surgeon is that he told

me that he is absolutely positive that the gastric bypass did not cause any of

my health problems, and most certainly not chronic panc. He said he initially

started out doing some gastric bypasses and had done about 100. He said his

colleage had done about 1000 or close to it. He said the only way the gastric

bypass causes even acute panc is that very rarely you might see a gastric

bypass have an attack of acute panc soon after the surgery just because you're

messing around in the gut and the panc doesn't like that. He told me that

having the gastric bypass was probably one of the best things I could have

done to improve my health and that if I were still as heavy as I had been,

things would be much worse. That was reassuring because one of the first

things anyone asks me when they find out I've had the gastric bypass is " Do

you think THAT surgery caused the pancreatitis " (or any of my other health

issues). Considering that I was diagnosed with lupus 5 years before the

gastric bypass and had my first documented attack of acute panc 2 years prior

to the gastric bypass, I honestly don't think the gastric bypass caused any of

my problems. However, I am honest enough to realize that I am a little

defensive about the surgery. It is so contriversial and so many people are

quick to blame any health problems on 'that' surgery!

Well, enough. Despite having had a flare last night that was pretty bad for a

while, I managed to stay away from the ER and I'm actually feeling pretty good

today. Hubby is working out in the garage and has threatened to get a whip to

get me moving! I'm sure you can tell I'm almost frozen in fear.

However, I do want to get our house put back together and once I get him

moving, it's easier for me to get motivated. So - the house is screaming for

me!

Hope this finds everyone doing well,

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