Ralph

[Guest guest]

Ralph,

I am so sorry things are going so badly for you. Have they done a liver biopsy

to find out why your liver is enlarged and what stage of damage (if any) you

have in your liver? Are your liver enzymes (AST and ALT, also know as SGOT and

SGPT) elevated? What about your bilirubin and/or alkaline phosphotase? I have

autoimmune liver disease, which was diagnosed by having a liver biopsy the end

of Dec 02. My GI, who for months had been insisting my liver was perfectly

healthy, totally changed his tune and began blaming all my problems on my liver

once he finally did the liver biopsy (4 months after my internal med doc said I

needed one) and it showed that I have stage 3 fibrosis (scarring/damage) to my

liver. Liver damage is graded on a scale of 0 to 4, with 0 meaning no damage

and 4 meaning cirrhosis. I already had stage 3 damage, so there was just a

'little' something wrong with my 'perfectly healthy' liver! Do you catch my

sarcasm here? From January to May 03, my GI kept insisting that all of my

pain, nausea, and vomiting was from my liver disease. Never mind that some of

those episodes were accompanied by elevated amylase and lipase. After I saw a

hepatologist at Vanderbilt University in Nashville, TN and he wrote my pcp a

letter saying that I do definitely have autoimmune liver disease, but that the

episodes of pain, nausea, and vomiting (which were often accompanied by 'spikes'

in my liver enzymes up to the 700 range, which is over 20 times the normal

limit) had absolutely nothing to do with my liver and/or the liver disease. He

said they were caused either by my pancreas and/or the biliary tract. The guy

at Vandy wasn't the least bit interested in anything other than my liver

disease, so he really did nothing to help me. However, it was after the pcp got

that letter and contacted my GI doc, that the GI doc then changed his tune

again. This time he said, yes, he did think I had something going on with my

'biliary tree' in addition to having liver disease, but that it was all caused

by the gastric bypass I had in Dec 01 and I simply needed to have surgery to

have the gastric bypass reversed. I was furious! I told my pcp that was a load

of crap because I had my first 'documented' case of acute pancreatitis in Jan

00, almost two full years prior to having the gastric bypass (weight loss

surgery - which I would have again 10 times over and I have had absolutely NO

complications from that surgery). At that point, I was totally 'through' with

my old GI. He had been wrong about every single theory he'd had concerning what

was going on with me, yet I had stayed with him anyway! When I really thought

about him, I decided I must just be a dumb ass for keeping him as my doctor!

This all really ended up being a blessing in disguise. About two days after

this, a light bulb went off in my head. I began looking at my labs of the last

couple of months. I noticed that my liver enzymes were spiking higher and

higher again despite the fact that the liver disease seemed to under control

with the prednisone I was taking. I live in a small town only 5 minutes from

the local hospital. There are no GI docs in our town at all and my old GI was

100 miles south of here. On occasion, I would go to the next town (about 25-30

miles east of here) to a wonderful private hospital when I'd have an attack that

warranted an ER visit. My mother begged me to please let her take me to this

hospital with every attack because they treated me so much better than some of

the docs at the local ER. I hated making my family drive so far every time I

had an attack so most of the time I'd just go to the local hospital. The local

hospital never bothered to check my lipase because they had to send it out and

it took two days to get it back. I noticed that as my liver enzymes got higher,

the times I went to the hospital in the next town, my lipase also got higher.

When my liver enzymes were about 2 to 3 times the normal limit, my lipase was

just slightly above normal. Not enough to warrant admitting me, but above

normal none the less. My amylase stayed right around 50 regardless of what my

liver enzymes were. In fact, my amylase had not been above normal since Oct 02.

Coincidentally, this was the same time I began having problems with my blood

sugar and was 3 months after the return of the acute panc attacks! My blood

sugar problems have continued and in Jan 03 I saw an endocrinologist and was

diagnosed with diabetes. My theory is that around Oct 02 was when I'd had

enough acute panc attacks to cause permanent damage to my pancreas, resulting in

diabetes and a pancreas that no longer has the ability to produce enough amylase

for an elevated level, even in the most severe panc attacks. Back to my story,

by early May 03, I had attacks that caused my liver enzymes to elevate to the

400 range (over 10 times normal), my amylase was normal but I don't know what my

lipase was since they didn't bother to check it at my local hospital. Once I

noticed the pattern, I told my husband and mother that I would agree to allow

them to bring me to the hospital in the next town with any future attacks so

that my lipase could be checked and we could see if episodes with higher liver

enzymes DID go along with an elevated lipase if I was seen somewhere that they

bothered checking it! This was May 29, 03. I didn't have to wait long as I

began having a bad attack only about two hours later. When it didn't let up

after several hours, I called my mom and asked her to take me to the ER. We had

agreed that she would take me since she doesn't have to work and my husband has

a very limited amount of vacation days and once those are used, he doesn't get

paid if he misses work. Anyway, it ends up my theory was right. This time my

liver enzymes were back up to the 700 range (about 20 times the normal limit),

my amylase was 58 (normal is 25-100) and my lipase was 501 (normal is 23-270).

I was admitted under the care of my internal med doc since he was the only doc I

had in Huntsville (where the hospital is) at that time. He was VERY unhappy to

find that they had not been checking my lipase when I went to my local ER. He

said lipase is actually MUCH more specific for indicating pancreatitis than

amylase. He said I was absolutely having an attack of acute pancreatitis and

that most likely my theory was correct - when I have episodes of pain, nausea,

and vomiting and my liver enzymes spike up - most likely my lipase was elevated,

too. After 4 days in the hospital, I convinced him to let me go home. 36 hours

later, I was back with an even worse attack. This time my liver enzymes weren't

quite as bad (they were not quite 400 - around 10 times normal) but my lipase

was 617, which was a little higher than it had been when I was admitted the

first time. The second attack earned me a 7 day hospital stay. However, the

back to back attacks were actually a blessing! My internal med doc immediately

called in a GI/hepatologist in Huntsville. This was wonderful because I had no

intention of ever going back to my old GI in Birmingham. My internal med doc

also ordered a ct scan since it had been several months since I'd had one. The

GI/Hep that my internal med doc called in is the greatest! Before he ever came

to see me, he had already looked at the films from my ct scan. He told me that

the ct scan showed the beginning of permanent damage to my pancreas. He told me

that in addition to the autoimmune liver disease, I have chronic relapsing

idiopathic pancreatitis. He said the episodes of pain, nausea, vomiting, and

spikes in my liver enzymes were ABSOLUTELY caused by my pancreas, NOT by my

liver. He's not sure of the cause of the cp, but thinks that part of my problem

was that the bile didn't flow well. This theory was based on the fact that with

many attacks my alkaline phosphotase elevates, which indicates a bile duct

obstruction and also because my worst pain is in the right upper quadrant of my

abdomen, under my right rib and where my gallbladder used to be (it was removed

in Jun 98). The new GI/hep put me on actigall to thin my bile and help it flow

better and pancreas enzymes to keep my pancreas from having to work as hard to

help digest my food.

I have been much better since I went under the care of my new GI/hep doc. I

think I'm better for several reasons.

1. I finally have a GI/hep doc that truly listens to me. He realized

immediately that I have more than one thing going on as far as my GI system is

concerned.

2. He didn't just try to blame things on the gastric bypass surgery. In fact,

he told me the gastric bypass did nothing but improve my overall health because

it allowed me to get rid of 100 lbs of excess weight.

3. He put me on the right medications to help my pancreas and a few weeks later

added an immunosuppressant to help keep my liver disease under control.

4. My internal med doc contacted my pain doc and told him I needed to be on

long acting pain med in addition to the short acting oxycodone that I was on.

The pain doc then added MS Contin 30 mg twice a day to my pain regimen. I also

have oxycodone 5 mg that I can take 4 times a day for breakthrough pain.

My GI/hep told me that he couldn't promise me I would not have problems. He

said, " In fact, I can promise you that you will have problems. You have several

illnesses that are both chronic and progressive. You will have pain, nausea,

and vomiting. You will have acute attacks of pancreatitis and some will land

you in the hospital. However, my hope is that we can improve things for you

overall, decrease the number of hospitalizations, and ER visits and just

generally make things better for you than they have been for the last year. " He

has definitely done that. I was able to go two months without having an attack

severe enough to warrant an ER visit. That was the longest I have gone since

the attacks began again on July 18, 2002. Going two months without a severe

attack might not sound like a lot to most people. However, to my husband and

me, it felt like a miracle. From July 2002 to June 2003, I was admitted to the

hospital about 20 times. I have no clue how many times I have been to the ER or

to my local pcp for IV or IM meds to controll the pain/nausea/vomiting in

addition to the times I was actually admitted to the hospital. I went under the

care of my new GI/hep on June 4, 2003. I was discharged from the hospital on

June 10, 2003. I have been admitted twice since then and one of those

admissions was for surgery to repair a hernia and had nothing to do with the cp

or liver disease.

Despite the fact that I still require daily medication for both pain and nausea,

I am much better than I was for almost a year. There is still no way I can work

on job full time (or really even part time at this point), so I am very thankful

for my disability retirement from my job as a federal govt employee as well as

the approval of my social security disability. To be honest, I don't anticipate

ever being able to work full time again. However, I am dealing with multiple

illnesses, so my situation is quite complex. I have systemic lupus,

antiphospholipid syndrome (an autoimmune clotting disorder, which makes taking

blood thinners a life long necessity for me), autoimmune liver disease (which

means I have been on long term steriods with all the side effects that they

entail and also means I will be on immunosuppressant medication for the rest of

my life - however, I'm grateful for the medications since the 10 year survival

rate without treatment for the liver disease that I have is only 10% - so I will

deal with the side effects of the meds!), type II diabetes, and chronic

pancreatitis.

I hope I haven't bored you to tears with my story. My main reason for sharing

it with you was to let you know to NEVER give up hope. CP is often very

difficult to diagnose and even many GI doctors are pretty ignorant about it.

Hang in there and keep searching for the doctor that is right for you. One of

the best things I did pretty early on after the acute panc attacks returned, was

to ask my pcp to refer me to a pain mgmt doc. This was in Nov 02, about 4

months after the acute panc attacks returned. At first I didn't like the pain

mgmt doc because he didn't seem at all sympathetic about my daily pain. I had

to sign paperwork agreeing to random drug testing, to only use one pharmacy for

all my pain med prescriptions, and to not accept a prescription for pain med

from any doc without the okay of my pain med doc. In the beginning, my pain doc

prescribed only three lortab 10 per day. I was afraid that would not be enough.

However, I soon found that by having pain med available on a regular basis and

treating my pain before it got to the intolerable level, I was able to keep my

pain under control with less medication and I was better able to participate in

life. After I was diagnosed with liver disease, the pain doc changed my med to

three oxycodone 5 mg daily because there are not a lot of oral pain meds that

don't contain either tylenol or asprin. With liver disease, taking tylenol

three times every day is definitely not a good idea. Being on prednisone and

coumadin meant I definitely can't take anything with asprin. Later, my pain

meds were increased and I now take MS Contin 30 mg twice a day and oxycodone 5

mg four times a day for breakthrough pain. When I had my hernia surgery in

August, the pain doc agreed to allow me to take six oxycodones a day for the

first two weeks after surgery. I think if I had needed to take six for a little

longer than the two weeks following surgery, he would have okayed, but by two

weeks after surgery, my pain was being controlled on the former dose. When I

get to the point that my pain is not controlled by the amount of pain med my

pain doc prescribes, I'm usually to the point that no amount of oral med is

going to help so I go to the ER for either IM or IV pain/nausea meds.

Going under the care of the pain doc helped me deal better with not knowing what

was causing my episodes of severe pain, nausea, and vomiting. It helped me to

hang in there and keep trying to find the right doctor to give me answers and to

help improve things for me as much as is possible. When your pain is not being

controlled, it is very hard to remain rational and optimistic. If you are not

under the care of a pain mgmt doc, I would highly recommend that you consider

it. You may have a long road ahead before you have any real answers. I know

simply controlling the pain is not really what you want and I do understand

that. However, for right now, that may be the best that the doctors can do for

you until things progress to the point that more shows up on tests and points

the doctors in the right direction in regard to what is causing your pain.

Take care,

W