update

[Guest guest]

Hey guys,

I just had to delete about 150 unread e-mails so if I missed something that was

directed to me, please send it again. You may recall the e-mail I sent after

seeing the hepatobiliary surgeon on Nov 3rd. He insisted that my cp is caused

by lupus and that nothing can be done surgically to help me. He then asked if I

had family with me and I told him my mom was with me. He said he'd have the

nurse call my mom back to the exam room. He then told me that I needed to be

put on stronger meds to get my lupus under better control and that I needed to

get off most of the other meds I am taking because I am on 'way too much

medication and it's just making my problems worse'. He said that they give

people who are dying from cancer the amount of pain med I'm on and that morphine

was the worst narcotic to be on because it totally shuts down the GI tract,

worse than others. He told me that I was addicted (yes, he said addicted) to

the MS Contin and would need professional help and it would probably take me a

year to be able to get off of it. I told the surgeon I was under the care of a

pain mgmt doc so I assumed he was a professional capable of telling me how to

taper off the MS Contin. I was pretty dumbfounded because it was obvious the

surgeon wanted my mom in the room because he assumed I would not tell my family

what he had said. I left the appt feeling like a total loser who was just a

wimp addicted to drugs. The logical side of me knew that was not true, but the

appt was pretty upsetting. However, I did decide that I wanted to get off the

MS Contin since I do have terrible problems with constipation.

So, now for the latest - and this time it is good news!

I had my appt with my pain doc today. Actually I saw his physician assistant,

Jeff. I told him what the hepatobiliary surgeon said. Jeff told me that

different narcotics cause more or less constipation problems in different

people, but that morphine probably was worse than most other narcotics in that

aspect. I told him that I have already tapered my MS Contin 30 mg from 3 times

a day down to 1 a day and even had a couple of days with none. I do think the

surgeon was right that the MS Contin was making things worse - at least to some

degree. I have felt better since cutting back on the MS Contin and have had

less problems keeping things in the old gut moving. Jeff gave me a prescription

for MS Contin 15 mg (smallest dose it comes in). He told me to take 1 or 2 MS

Contin 15 mg for seven days, then take only 1 for the next 7 days and then I

should be able to stop it completely with no problems. He told me that if at

any time over the next few weeks the lower dose of MS Contin along with my Oxy

IR for breakthru pain is not controlling my pain, to call them any time day or

night. He told me that he does not want me to think that I'm just left on my

own to deal with the pain if it gets worse again. He will see me again in two

weeks and then we'll decide if I think I can be okay with just the Oxy IR or if

we should add a different long acting pain med. He was so incredibly kind and

assured me that I had no reason to feel guilty for being on the amount of pain

med I was on.

After the appt, my mom told me she had talked to my internal med doc about how

my appt with surgeon had gone. My mom was very upset because she has seen me

many times with level 10+ pain and she knows that I am totally honest with

everyone about the amount of pain med I take. My wonderful internal med doc (my

pcp) told my mother that she had every reason to be upset over the way the

surgeon had treated me. He told her it was great if I could handle things

taking less pain med but that with my medical history, the amount of pain med I

was on was not at all unusual. He told her that if he thought for one minute

that I had a problem with the amount of pain med I'm taking, he would not

hesitate to let me know. He told my mother that I was absolutely not 'addicted'

to any pain med. He said I am most likely 'clinically dependent' and that's why

it has to be tapered down, but that was totally different than being addicted!

He told my mom that even though I have been able to cut down on the MS Contin

that he is sure there will be times that I will have to go back to taking more

pain med and times that I will have to be in the hospital on IV meds to keep my

pain and nausea at a tolerable level. He said that he felt the surgeon was

totally out of line and that with my complicated health issues, I should never,

ever feel guilty about wanting my pain to be kept at a tolerable level.

My mom told me she was afraid I'd be mad at her for talking to my pcp but that

my appt with the surgeon had upset her so much that she just knew she had to

talk to my pcp about it. By the way, he's also my mom's pcp and I gave him

written permission to discuss anything regarding my health with my mom, stepdad,

husband, and/or daughter.

As you can imagine, knowing that both my pain doc and my pcp totally trusts me

and believes me when I tell them I am in pain was quite a relief. Even though

they are both very kind to me, I have been afraid that maybe they think I'm just

a big baby or that I just want drugs for the fun of it!

It's really terrible that we are so often made to feel ashamed for simply

wanting to have our pain controlled to a tolerable level so we can have some

sort of life now and then. Even though the appt with the surgeon was upsetting

and traumatic, it was worth it for me to find out that both my pain doc and my

pcp do trust me and that they do believe that I have very real medical problems

that cause quite a bit of pain. I now believe that both of these doctors know I

would never, ever do anything to abuse or betray the trust that they have in me.

hope this finds everyone doing well.

W