# Laurie and others: how are you doing now?



## HipJan (Apr 9, 1999)

....? Please give an update. I think of all of you who have had pancreatic/biliary problems. Thankfully, as for me, I am doing quite a bit better at this time. Last week the main symptom was my horrid stomach pain. This week it seems to be "IBS" instead. Haven't had the feeling of bad biliary dyskinesia for quite a while ('course, I don't eat much animal fat either). Haven't had a pancreatic attack, as far as I know, for three months. May have actually gained .5 - 1 lb! Will see endo. again later next week and, hopefully, be tested for parathyroid/calcium again; I am hopeful the tests will continue to be negative.Also, I am thankful I recently learned my labwork for adrenal tumor was negative.


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## bellyknot (Jul 24, 2000)

How can you differentiate the pain from IBS to pancreas? Since I believe my pain has been my pancreas all along I'd just like to know what kind of pain does your IBS cause? Since Christmas I've been having daily pancreas pain all across my upper abdomen with stabbing and wrapping around my chest. Guess I ate too much pumpkin pie and fat stuff. I'm suffering now but my new GI just gave me a call and "invited" me to come in so that we can "come up with a plan" for me. This is a first for me. I've never had a doc that didn't just say "You have no options other than pain control and diet." Even if that's the plan, at least she cared enough to call. Happy New Year to me! And to all of you!!


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## LaurieJ (Sep 3, 2002)

Hi HipJan and BellyKnot!I am so glad that you are doing better HipJan! And that your labs are coming back good. So much better than you were a while back.And Bellyknot, as far as I am concerned, what you are describing is typical pancreas pain. That is what I have been having for so long. But mine hasn't been from food - I haven't been able to eat muh since my last ERCP (two weeks ago). But the band around the ribs, the back pain all of that is typical of the pancreas.As far as me goes....things couldn't have gotten worse. My doctor, who had diagnosed me with obstructive pancreatitis because of my stenotic duct, told me yesterday that he is wrong, that he thinks I never had pancreas problems to begin with and that I "tricked" him into giving me stents. And that now I really may have pancreas problems but it is only because he put stents in me when he shouldn't have. Obviously I do not agree with him one iota. So I came to work today to use the computer to compose a letter to him in which I made very clear my unhappiness with his change of attitude towards me. But the funny thing is, I still like the guy to some extent. I will not go back to him and have cancelled all future appointments with him, but feel that something very odd happened - almost like he got me confused with someone else. Oh well, so now I am back to looking for another doctor that knows something about pancreas' . Who would have thought it would be so hard to get someone that will take care of pancreas disease? (I guess you know about that BellyKnot, don't you).Laurie


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## bellyknot (Jul 24, 2000)

Laurie,You "tricked" him? Good God! What the heck kind of doctor is that? Sounds like he just doesn't want to admit his mistake and lack of knowledge about the pancreas. This, I've found is the case with most of the GI's I've had. Too bad that you couldn't straighten it out with him since you like the guy, but I liked mine too and got nowhere fast with him. My new GI called me yesterday and asked why I hadn't been back? Said she'd gone through my whole chart and wants to work on "a plan". What a nice switch from the gloom and doom that I always hear like "There is nothing we can do for you at this point."Hip Jan,It's great that your blood levels are normal! I hope you are feeling better. Remember if you do have chronic pancreatitis after a time the amylase and lipase not longer elevate. I don't mean to freak you out but you really need to know this. I didn't and went on believing that my pain was from IBS because even my GI's didn't know this important little bit of info although it's defined under the NIH website under chronic pancreatitis. Hopefully this is not the case for you since you've got other stuff going on.


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## HipJan (Apr 9, 1999)

thanks for the info, Bellyknot. no, didn't know. I believe I have indeed had pancreatitis (but, again, not for a while) and that when I wasn't having that that I may at least have been having some pancreatic soreness or some biliary dyskenisia pain. I'm not one to ask about IBS pain, as I have never really had bad IBS, but when my bowels act up, I either have no pain associated with it or pain that is in the lower abdominal or lower back areas, not higher. sometimes it is hard for me to distinguish between stomach pain, though, and pancreas or liver pain. more than anything else, I do have the tendency to have stomach problems and stomach pain, but sometimes I can't tell for sure where the pain is coming from.question: does the pain in your back subside a bit when you've released gas? has always done so for me! another possibility for me is that I could have had an ulcerated stomach and that perhaps I had been feeling some of that in the back too.I'm happier for now, at least. I believe I will stick with my mostly vegetarian diet, though it's a bit of a hassle. it seems to have helped with my blood pressure too, which was needed. oh, Laurie, I am so sorry to hear of your plight. I don't even know what to say to you. it all sounds like a bad dream. I am going to pray some big prayers for you, if you don't mind. and you too, bellyknot, if you don't mind. ?


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## Jleigh (Dec 8, 2000)

Just want you all to know I will keep you all three in my prayers as well. The pancreatic pain you have described is exactly what I had for 7 years! Once they found I had that polyp on the opening to my pancreatic duct and removed it, the pain stopped for the most part. True, it did cause me to have pancreatitis but now that it is overwith, I have not had any severe attacks since September. I am so thankful.I had an ERCP in December and all my biopies came back negative. I have to have another ERCP in a year to check on things. Bad news is that the stent they inserted during my ERCP in December has not migrated out like it is supposed to so I have to go back asap and have it removed. I hear there is a slight risk of pancreatitis after the removal. Ugh.....Stay strong everyone and Laurie, I still think you should go see Dr. Sherman.Jleigh


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## HipJan (Apr 9, 1999)

I will be thinking of you when you have your procedure again, Jleigh.That pain for 7 years?!?!?! Ugh. I seem to remember you had GB surgery a couple years ago (?). So, you had the weird back pain for a few years before that? What did they tell you all that time that the pain was?


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## LaurieJ (Sep 3, 2002)

Hi HIpJan, BellyKnot and JLeigh,Thanks everyone for the prayers and support. I hope that JLeigh is doing well with that stent problem. I am beginning to really cringe at the word "stent" - grrrrrrr.As far as me having "tricked" the doctor, maybe I didn't put this too well. My impression when discussing this with him was that he was covertly thinking that I was Muchausen: that is because I have a background in health care and therefore have a basic understanding of how doctors look at things that I presented myself in a way to direct his thinking to my pancreas. That is, that I know enough about the signs and symptoms of pancreaitits that I "acted" these out for him. Now I may have totally misunderstood his attitude, but that is what I walked away with from that last appointment. My immediate plan is to focus on NOT thinking about this whole mess and see how much of the pain was a result of the anxiety of being hospitalized every six weeks. I am thinking that maybe the stents worked alot better than I think but that the pain issues have been overshadowed by this whole doctor thing. I do have a huge sense of relief knowing that I will not have to undergo anymore ERCPs!!!! And I have been able to cut back my pain meds for the last 4 days - which is very encouraging to me. I am hoping that at this point it is just a matter of mind over matter!Bellyknot - I am really excited for you about the doctor calling YOU and saying that she had a plan to discuss with you. In some ways, that is my fantasy and gives me some hope that maybe there is a GI person here that will be my fairy god mother and give me that same call! Good luck with that and let us know if it is a workable plan, if you care too.Thanks everyone!Laurie


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## HipJan (Apr 9, 1999)

maybe some of it's anxiety, as you say, Laurie. but maybe it's also that your body, specifically in the ducts, has never quite healed up in between ERCPs. if you continue to have problems, maybe you could see Dr. Sherman, as Jleigh mentioned? that's still strange, about your doctor. I hope you do finish writing him.bellyknot, keep us informed about whether the doctor can help you.


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## Jleigh (Dec 8, 2000)

HipJan, I actually had my gb out 7 years ago. That is exactly when my pain started. I did not have the pain prior to the gb surgery. I only had diarrhea and cramping which I find out now is not a symptom of gallbladder problems. Wish I had checked into it better years ago. Anyway, the pain started immediately after the surgery and centered in my sternum area through to my back. Very sharp and excruciating. All these years I have been seeing one GI after another to find out what the pain was and how to help my IBS. They kept telling me my pain was from Acid Reflux. My new WONDERFUL GI said I do not have any acid reflux. Nothing helped until I started seeing Dr. Bilotta and he had me do the M2A capsule endoscopy. That showed the polyp and apparently that was the cause of the problem. I had my stent removed Monday. Thank you all for keeping me in your prayers. I did very well! No pain. I was knocked out really good this time and had a hard time waking up Monday so I slept pretty much the entire day. The procedure was done at 9:30ish and I got home around 3:30ish. A very long day once again. I don't have to go back and see Dr. Sherman for a year







He does want me to have that Enteroclysis test but I don't want to. My GI says I can wait until Summer if I want so I am waiting.....Laurie, I hope you're feeling good today.Jleigh


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## HipJan (Apr 9, 1999)

I'm glad you're feeling well!I must have misread an earlier post (thought the 7 was a 2) about when you'd had your GB surgery. That's exactly the type of pain I've had (plus some more) - in my case, before and after my surgery. It began letting up quite a bit a couple of months ago.


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