NANNY; SPIKE 1951 - update pancreas v. SOD

[5fan]

Nanny:

I wanted to put this here so you would see it and also for anyone else who read it.  As you know I recently saw my GI and he is sending me to Shands for an ERCP, thinking I may have SOD.  

Well, today I had yet another follow-up visit with my surgeon (gallbladder - out in mid-July), his nurse told me that that was one of the conditions he was thinking of but didn't want to mention it until after I had talked to the GI.  During my exam he seemed to think that I was still having some pancreatic pain.  I told him about being in the hospital and asking my GI's partner if it was possible that I had chronic pancreatitis and him telling me no because my A&L levels were not elevated.  Let's just say that he didn't say anything negative or defamatory about the doctor who told me that, but the look he gave his nurse and the response he gave me pretty much told me that the doctor who told me that DEAD WRONG.

I'm becoming even more interested and anxious to see what the results of the ERCP are going to be.  The bad news is it looks like December at least before I can get it done.  That is unless I have another severe attack.  I would rather wait until December.

I just wanted to let you in on what was going on, and as I said for anyone else reading this who might be interested.

[Nanny]

It's good that your surgeon seem to be aware of what's going on and will support the SOD and pancreatitis theory.  If I didn't post this quote, which is taken from the John Hopkins Medical Gastroenterology website earlier, in regard to enzyme levels, I'll do so again:

Biochemical Measurements

Isoamylase, lipase, trypsin, and elastase levels may be low, normal, or elevated in patients with chronic pancreatitis. In early or mild cases of chronic pancreatitis, it is difficult to make a definitive diagnosis based on serum enzyme levels alone.

It is so difficult to get some doctors, even gastroenterologists, to understand that enzyme levels are not a difinitive indicator!  I'll paste the website below for anyone else interested in learning more about chronic pancreatitis.

http://hopkins-gi.org/pages/latin/templates/index.cfm?pg=search

I know you'll be happy to get your ERCP with manometry done and find out more about what's going on.  And I do hope that you don't have another attack beforehand.  It's good to know that you have found a GI that is willing to keep pushing forward to find the answers, he seems to be looking out for your best interests by referring you to other specialists.  Hopefully you won't have to deal with his partner in the meanwhile.  Good luck.

Nanny

[spike1951]

Glad you are going to SHANDS.  It took us 2-3 months to get an appointment as well.  That's the problem, not may good doctors, and a long wait.  My wife is now having one constant attack that has lasted 2 months so far.  She has been on IV homecare "Pain meds" four 5-day periods in the last 8 weeks and can't get out of bed more than 10 minutes without pain going to a 10 and getting very ill.  Her doctor at SHANDS, and they see the worst, said she had one of the two worst cases he was treating.

I say this to, maybe, get some feedback on others as severe as my wife and how they are doing AND to let YOU know that my wife had a normal ERCP but still has a very severe case of Chronic Pancreatitis based on SHANDS' secretion test and study of her symptoms, etc.  A lot of CP suffers do have narrowing ducts which can be corrected a lot of times and really helps the pain and disease. An ERCP will show those physical problems.  But if it is "idopathic" which I'm pretty sure means there is not a discernible reason that can be found as a cause, an ERCP can show normal.  Yet, there is no doubt that my wife has CP.

Hope all goes well.

[5fan]

I'm so sorry to hear that your wife is having such a hard time right now.  I wish there was something I could do.  I understand at least a small portion of the pain she is in. I know I never suffered like she is, but just what I did suffer was enought to make you wish you could help anyone going through it.  

My surgeon feels that Shands is the best place for me at this point also.  My friend seems to think it is odd that everyone (doctors) seem to be following my case so closely.  My surgeon wants copies of all tests done at Shands and has offered to fax all his records and copy them for me to hand-deliver if needed.  

I know I've been frustrated in the past, but I do feel that I have been lucky to have doctors (my primary GI and surgeon) who will listen to me even if those in the hospital won't.  

I have begun compiling a list of questions for the doctors at Shands.  They won't know what hit them by the time I get done!!!!!!  My doctor's office said I should have an appointment before the end of the year without any problem.  I'll be glad, I'm getting tired of Darvocet for pain on a daily basis - not to complain too much - I know it could be a lot worse.

My thoughts and prayers are with you and your wife through this tough time.  

Best wishes,

5FAN

[5fan]

First, let me say, Spike, I hope your wife is doing better.

I thought I'd just update you on my SHANDS visit.  I found out today that I don't go until December 20.  I was hoping for at least the beginning of December seeing how I have a doctor referral, but no such luck.  To top it off the GI coordinator told me it would only be a clinic consult to find out if the doctor up there feels "this is the test" I need and then things my or may not proceed from there.

I have to say that I am becoming quite discouraged.  I can't understand how people learn to live with pain every day.  I'm not good at it and don't quite know what I'll do if this doctor doesn't proceed with something to at least try to help.  I've had a "flare up" of pain and vomiting, more or less since Sunday, and am about ready to go out of my mind.  I hate to go back to the ER, but there are times the pain is so bad I wonder how long I can avoid it.

I hate to lay this on you both.  I know you have other things going on, but I just felt like I needed to vent to some people who at least the an idea of what it can be like.

THANKS

5fan

[purplehaze]

I'm new to this website and felt I had to respond to this area because it hits so close to home. I myself am scheduled to be at Shands in Gainesville this Dec 16th. My condition is Crohns disease and just came home from yet another week long hospital stay. I have diarreah at least six times daily along with abdominal pain, and nausea and live on darvocet, lomotil, bentyl, phenegran, and on again off again steroids. I've developed an ongoing pain in my left side that radiates to the back and varies in its severity. My liver enzymes were elevated but came down during my stay. Since all measures available have been tried, some more than once, and failed, my doctor has referred me to Shands. Since my doctor gave me no possibility of what could be the cause of the the new pain in my left side I decided to do some research on my own and keep coming back to the pancreas. The pain is never extereme but it has been persistent. Some days its just a dull ache while others its like a burning pain that seems to radiate towards the back. Is this consistent with pancreatic pain? Also, I had my gallbladder removed a couple of years ago. A year before I was diagnosed with Crohns. I do hope they can help you at Shands and thanks for listening, purplehaze.

[spike1951]

I know it took us so long to get an appointment with Shands but they will, i'm sure, follow through with an ERCP and other tests as needed.  Don't get discouraged, we too hoped they would speed up the process but since they get the worst of the worst, it takes them a while.

Hang in there and make that appointment.

Also if the pain gets too bad, don't go to the ER get your doctor to put you on IV homecare with a stong IV narcotic and a PCA pump.  Five days of no eating and strong pain control can help you physically and emotionally deal with the constant pain.  If it were not for these, my wife could not stand it.

Hope you see this, I have not check here lately because I have been so busy with my child and my wife now so ill that she can hardly get out of bed even a few minutes a day and gets out wiht our daughter once a month, it's very tough.  

Make your doctor control your pain or switch to the one that I think I email you about here in Tavares, Fl.

thoughs are with you

Spike