# ERCP



## HipJan (Apr 9, 1999)

Has anyone had this? I will find out tomorrow, probably, whether I will be having one in the near future.


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## LaurieJ (Sep 3, 2002)

Hi HipJan,I am having one on Friday to diagnose the type of SOD and to rule out chronic pancreatitis. I have learned a lot about both of these conditions over the last 4 months after I was first diagnosed. I am having the manometry part done to see if I will be a candidate for a sphincterotomy to correct the SOD. There are many, many good publications available online that discusses SOD and chronic pancreatitis and ERCP. There is also a support group in the Yahoo net that is for pancreatitis sufferers and their families. I find this group to be very helpful. Usually, the GI guy will do an ERCP after a MRCP unless he is particularly confident that you have something that can be corrected with the ERCP. If he is still fishing for a diagnosis, he will most likely lean towards a MRCP (this is a MRI that is specific for the biliary tract / pancreas). This will look for calcifications, strictures, stones and dilations. If something is found that can be corrected by ERCP then that may be the next step. If the MRCP is non-diagnostic and the doctor is still convinced that it is pancreatic or biliary problems (like SOD) then he may also do the ERCP after the MRCP. At least this is what I learned in my experience and research of the literature.If you would like to know more, let me know. I have TONS of information about it. (and I am very aprehensive about the procedure as it is fairly risky - usually a last resort before out-right surgery - one study that I read stated that this is more risky than gall bladder removal...see now I am getting myself all anxious again......)Laurie


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## MDN (Mar 14, 2003)

I had one in the hospital last year to check for stones in the duct before removing my gallbladder. It was a piece of cake, good luck! no worry


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## LaurieJ (Sep 3, 2002)

MDN,The problem is, that ERCP for SOD and pancreatitis is riskier than that for stone detection and extraction. But that being said, you are right, the majority (70 to 80%) of ERCPs, even for SOD and pancreatitis, are usually a piece of cake!Thank you for reminding me of this, I tend to see this in it's worst light as nothing connected with this procedure has gone right for me (my doctor quit, without transferring my care to another, my new doctor that I found on my own, refuses to see me before the procedure and in fact, thinks that I do not need it.........etc). I do not have much confidence in this less than reassuring situation







Laurie


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## HipJan (Apr 9, 1999)

Oh, Laurie, I am thinking of you right now!







Hi, MDN.I have read a lot on the Internet - possibly too much - about SOD and ERCPs. I am apprehensive as well. I saw the gastro yesterday, and he is wanting me to give some things more time. In the meantime, I am being put on a new med, for ulcers/reflux (which I also prob. have) and for bile salt absorption. I realize that won't help bile duct spasms due to SOD, but I am hoping I at least will get some relief from other problems. I am pretty fatigued from it all. By the way, I had gb surgery 2-1/2 weeks ago.Good luck - and please let me know how you do.


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## LaurieJ (Sep 3, 2002)

Hi HipJan and MDN:Just snuck outta my room to check in. The ERCP went really well up so far. I did have very convincingly high pressures so they perfromed the cut. I am told that this should take care of the colic attacks but they are not sure about the everyday pain and the eating pain. I am being confident about everything being good as the attending said that my sphincter was so spastic that nothing was getting through. That would explain the constant pain, in my mind at least.I am sorry that you are going through this but I am hoping that seeing that your doctor is already considering this possibility with you that he will act soon to correct the SOD. I had to wait three years, and I must say, psychologically I am going to have a hard time learning to eat again. I have become so phobic about it.But after 7 hours, I am still feeling fine! If you have any questions about life with this or the procedures involved in diagnosing and treating SOD, just let me know. I am happy to pass along the information that I have gathered.Laurie


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## HipJan (Apr 9, 1999)

Are you still doing okay? Let us know! I hope you have no complications - now or ever! The jury's still out for me. We will decide what to do later.


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## LaurieJ (Sep 3, 2002)

Hi HIpJan,I went home saturday morning - had no complications overnight. But the pain started on the way home and at times has been pretty intense. I am finding that the eating pain is actually a little worse than it was before the ERCP but that my apetite is better (if that makes sense). I am hoping that this increased pain level is just from the swelling from the cut, and that it will go away soon.What I have learned from my buddies on the pancreas board is that SOD may not be "cured" with one ERCP; that sometimes another one is needed to cut the pancreas duct too. I am not sure about what the doctors found specifically with me because I haven't talked to them while lucid. I am hoping to get a copy of the ERCP report by the end of the week so I can learn exactly what they found and figure out what comes next. My understanding is that if the SOD is there along with chronic pancreatitis, that the steady pain will not go away with the cut, only the colicky pain. And that there is a chance that the colic will come back if the sphincter gets scarred again. So it is most likely an ongoing, chronic problem that will need periodic intervention.That is the update: Sore but still optimistic! Laurie


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## HipJan (Apr 9, 1999)

I am very impressed by your optimism! Here's hoping your current pain is just temporary, due to the messing around with the bile duct. Surprisingly, my "bile duct spasms" have gone down in frequency and intensity over the past week. Also, since taking a med for stomach ulcers, the pain in both my stomach and upper back seems to have lessened (not totally).


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## LaurieJ (Sep 3, 2002)

Hi HipJan,Just wanted to see how you are doing. So far so good? I hope so.I have an appointment to see a GI guy in a whole different health care system to get a second opinion on my SOD and pancreatitis / hepatitis problem. I got an appointment for less than a week after I called! Seems like a good omen so I am going to be even more optimistic that this guy will actually have ideas that may help me.Laurie


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## HipJan (Apr 9, 1999)

Good that you are being so thorough!There's both good and not-so-good news for me. My stomach gnawing pain that I had while I was suffering from GB attacks is now gone (had thought it was part of the GB attacks, but turns out it was prob. an ulcer), as long as I take my medicine. At the time that began to leave, so did the horrible bile duct spasms, finally, though not totally. Every three days, I still have some sensations of stiffness and pressure in the area, much duller pain, though. Sometimes it is relieved by belching. I don't know if that'll continue forever or what. My med is also helping to relieve the D and bile reflux; I still have a bit of nausea. I have other misc pains, including gas under the ribcage in the front. We'll see what the doc says.Believe it or not, but my worst symptoms now are my "chronic fatigue," flu-like/allergy-like symptoms - and right at the moment, my groin pain (mystery pain that I've had off and on for 3-4 years, similar to bladder infection pain). I am trying to ask for bloodwork, such as for the liver; I wonder if my liver is properly detoxifying. Before the surgery, my PCP said to just forget about it - that I just had viruses I was trying to fight off; my gastro isn't so sure of that. Anyway, I feel like a limp ragdoll, but at least my gastro system began working better last week, with normal-looking poop (instead of the odd colors or little color, indicating a bile problem).


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## HipJan (Apr 9, 1999)

Laurie, did you ever get your test results? What do you mean by colicky pain?I had a terrible day/night yesterday. All the symptoms of the first few days came back, including the horrid back pain and even stomach burning and gnawing.


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## LaurieJ (Sep 3, 2002)

Hi HipJan,Yes, I did get the results back. I didn't have a dilated common bile duct but they did see delayed drainage with the contrast so that, along with the slightly elevated biliary sphincter pressure, convinced them to do the cut - to allow the bile to flow. They did not do any assessment of the pancreas, either the duct imaging or manometry (to see if that duct pressure was high too). So I am thinking that my continued and increased pain levels may be due to a missed pancreas duct blockage.The colicky pain that I mentioned is that intermittent pain that occurs when the duct becomes completely blocked. Kinda like when someone has a full blown heart attack as opposed to restricted flow from a narrowed artery (only with the bile ducts, it is the bile that is completely blocked). In my case, it was from the spasming of the sphincter seeing that no anatomical narrowing was seen (or stones blocking). Because it is intermittent, the pain comes on suddenly, lasts about an hour or two then gradually subsides with a week or so of feeling like my liver area has been hit by a truck. This colic is very sudden, very severe, is usually accompanied by nausea and vomiting and no relief is possible except maybe pacing it out or laying on your back with your legs bent to your chest (seems to relieve the pressure on the abdomen). The everyday pain is what I see as analogous to the angina that the heart patient feels - that is, the restricted bile flow does get through (like the blood in the narrowed arteries) but at a much slower pace which causes it to back up and produces pain. This pain is a gnawing, ripping, achy, thudding, heavy pain that is constant, with intense sharp flares whenever I smell food, eat food or even think of it - kinda like being hit in the stomach by a clydesdale hoof. I also have a railroad spike-like feel between my shoulder blades and a rubberband squeezing around the lower ribs - circuling around front and back. This pain is never relieved, may be lessened by not eating for a day or so and by taking alot of oxycodone (but then, there are times when the oxy may make it worse -there is no figuring it out).My warning that I am going to have a biliary colic attack is a slight pain in my back kinda in the kidney area but near the spine mid-line. Then I get slammed in that area immediately (within a few minutes of the initial soreness) - feels like a semi truck hit me there going 100 miles an hour. Then it encompasses the entire abdominal area - very wave-like, throbbing, etc. On the pain scale it is a 10: As bad as my acute pancreatitis attack and then some. But the acute phase only lasts a couple of hours. Then I am the "recovery" stage, where I feel like I have been beaten up by a gang of thugs. When I run my labs at this time (within 24 hours) my ALT, AST, AP, GGT and LDH are all moderately to severely abnormal - which indicates liver cell damage / biliary blockage. I usually cannot eat at all for a day or two then go on a liquid / soft food diet for about a week then slowly go back to more "normal" food. I hope this long story helps you figure out what is going on with you.Let me know if there are any more questions that I can answer. If you prefer, you can email me at goutbuster###yahoo.com.I am sorry that you are feeling worse again. I hope I can do something to help.Laurie


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## bellyknot (Jul 24, 2000)

Laurie,Did they check you Lipase/Amylase levels? I'm surprised that they didn't evaluate the pancreas since you have suffered a previous attack. I have chronic pancreatitis and was misdiagnosed with IBS for many years. Also had an MRCP last week and am anxious to get the results but my HMO moves S-L-O-W-L-E-Y. Your pain sound alot like mine but mine builds on itself so I stop eating as soon as that warning pain begins. Please insist on more pancreatic testing (no ERCP) as this can cause an attack and further the damage. If you have any questions or want to email me please feel free to do so.judy


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## HipJan (Apr 9, 1999)

Thank you so much, Laurie. Your post was great. I am going to show your post to my hubby too, so he can understand things better. It sounds like I do have similar problems to you, though it appears your problems are somewhat more severe so far (e.g., I have mild nausea, no vomiting, and the pain is not a 10, but it is bad). Guess what, right at this moment I have the midback soreness pain you describe. My attacks seem to be three days apart, so today is the day for things to begin again. Unfortunately, I am so underweight, so I have to eat, but I am finding myself eating a semisoft diet all the time.I wish after your procedure that you would at least be feeling better.







Please keep us informed.belly, I may ask about the MRCP too. However, I know that that is not the preferred test, because they can't do the pressure readings. How do you deal with the chronic panc.? Just stop eating?


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## bellyknot (Jul 24, 2000)

HipJan,As soon as I feel that knife pain or the pain radiating around my back I quit eating for 2-3 days. Lately I've been doing very well thanks to Viokase which is a pancreatic supplement that you take with meals. It helps me (but not everyone) with the pain after eating. Ask your GI about this. It's non narcotic and has been a godsend for me. Good luck with your C.P. Did you say you had had only one attack? If so, chances are you will recover fully as long as you don't drink (EVER) and eat low fat small meals.Hope this helps with your CP issue.Judy


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## lizzy (Jul 5, 2002)

I had one for a pancreas attack, I know when it envolves the pancreas they have to be careful as it can bring on another attack, the procedure was fine, they gave you something that you can not remember any of it, so that part was not hard, I unfortunatly did have another pancreas attack after the procedure. I wish you the best of luck, it really is not bad


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## lizzy (Jul 5, 2002)

I had 2 accute pancreas attacks last year, I was on TPN for 4 months, they could not find out what was wrong, I have an ercp done, they cut the bile duct of the pancreas, but that brought on another attack, after getting off the feeding tube, and having a MRI the doctor claims he sees no damage to the pancreas, yet I am on digestive emzines, and I am in cronic pain, nothing like the accute attack, it seems when I get around fumes it seems to get much worse, as well as eating anything to fatty, it is very frustrating as the doctor really does not want to believe that this is the pancreas, because I have gained wieght, and seem to be manageing, the last time I went to him, he told me it must be muscle giving you the pain, have you heard of fumes causing pain to be worse in the pancreas? I go to him in a couple of weeks, I also am being treated for ulcerative colitis but when I bring up the pancreas pain, he wants to avoid the questions, I feel like maybe it is because he does not really no, they could never find out what caused the attacks, I have never drank in my life, so they were stumped, can you help me shed some light on this problem, my amalase and lypase went down after the 4 months, I have not had it tested since, but I really still have alot of pain, not as bad as your sounds, that sounds like when I had the accute attack, but never the less, doubled over pain sharp, I just get such a worried feeling when I get this pain, which it very often. thanks for any info you can give me.


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## LaurieJ (Sep 3, 2002)

Hi HipJan, BellyKnot and Lizzie,Since my last post, I have learned that a previous MRCP (from last May) showed that I may have "pancreas divisum" which is an anatomical birth defect that involves the pancreatic ducts. Most people who have this do not have any problems but there are some that do - in fact very much like what I am experiencing. My previous doctor must not have thought that it was significant because he never mentioned it to me all this time. But my new doctor that I saw on Thursday thinks that it is worth investigating and says that it could explain my problems. He said that the liver problems are completely unrelated to the pancreas - that it is "impossible" to have high liver function tests with chronic pancreatitis. So I am going to have another ERCP done this Friday - this time to look at and treat, if possible, the pancreas problem. If it there is a problem, then he will put in a stent, then in 6 weeks go in again to put in a bigger stent, then yet again in 6 more weeks. So depending on Fridays findings, I will have one or three more ERCPs in the next couple of months. I am a little anxious about this one because of all the things that you have mentioned concerning risks, etc, but it has gotten to the point that I can not live like this - feeling constantly sick, unable to eat, etc. I am awful to live with, and I feel so bad for my husband.As far as answering questions from Lizzy - boy, this is hard. I would have to say that smells can cause an attack / flare. But that is usually when it involves food. How it has been explained to me is that when you smell food, your body releases pancreatic juice so that, if you eat, the body is ready to digest the food. But if you have blockage of those ducts, the flow causes pain. As far as seeing no damage to the pancreas, again my information states that it is more likely that actual radiographic changes in the pancreas are not seen for many, many years after the symptoms start (sometimes up to ten years later). In fact, learning from my pancreatic board buddies, it is not uncommon for a diagnosis to NOT be made for several years to a decade after symptoms start. My new doc says that a very definitive way to look for pancreas problems is an ERCP with endoscopic ultrasound. This has a very good chance of catching any problems with the pancreas - but not many hospitals do it. Also, the amylase and lipase values are not usually elevated with chronic pancreatitis - but will be with acute attacks - so this is NOT a reliable way to diagnose chronic pancreatitis. Also, although drinking is the most common cause of chronic pancreatitis, it is not uncommon for it to occur after one attack of acute pancreatitis. That is what I think happened to me: I had one acute attack three years ago from abdominal surgery and because of my birth defect, the acute attack morphed into chronic.What I have learned from the pancreatitis support group is that chronic pancreatitis is VERY hard to diagnose and most doctors do not even want to go there or consider it. And once diagnosed, it is very hard to get treatment for it. I am not sure why, other than it is based on pain and most doctors do not acknowledge pain as a disease - that is, if there are no objective findings (like abnormal lab tests or radiology) then they are reluctant to find a cause and to treat it. The advice that this board has given me is to persevere -to find tht right doctor. My good fortune, I think, was that I finally went to a hospital that specializes in pancreatic disease, which is very rare; according to my new doctor - he says that there are only three or so, places in the US that does this. My experience is that even a GI specialist is not that knowledgable about chronic pancreatitis. So my advice to you is to keep a log of your pain. Be as clinical as you can be, then give it to your doctor to read. That is what I did, a short one page summary, with the location of the pain noted, the intensity, duration, what makes it better, what makes it worse, etc. That seemed to impress him and made our conversation much more productive. (I can email you a copy of mine if you'd like - just let me know by contacting me at goutbuster###yahoo.com)HipJan, I am so sorry that you are going through this and so often with the colic pain. I hope that my description helped your husband to understand more what it is going on. It is a hard disease for family members to understand - because of the food aspect they tend to think that it is in your head, because everyone WANTS to eat food! so if you don't yo must be "crazy".This is long, but I hope that it helps all of you. It will be nice to know that my experiences may lessen your frustration and hasten your getting the appropriate medical care.Please, let's keep the dialog going, if you wish, as this actually helps me cope.ThanksLaurie


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## TechChick (Jun 27, 2002)

I'm scheduled to have an ERCP at 10 am this morning, as you can see from the time now 3:50 am. I'm having problems sleeping..







This is my second one so far. Anybody that has read my previous posts knows I have had extensive health problems. This ERCP is to check up on the cysts I have in the ducts. My GI also mentioned something about me having been born with a birth defect involving the ducts, I have know idea what that means. I'm scared of the whole thing. Hopefully I'll get some more answers tommorow.


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## HipJan (Apr 9, 1999)

TechChick, I'm thinking of you right now! Wishing you the best. Keep us informed once you are back home again.Laurie, glad this discussion is helping you cope too.







Both TC and Laurie: I have a friend who learned thru ERCP that she also has a pancreatic birth defect - that some ducts are reversed or something.Bellyknot, we aren't sure what is going on with me yet, though I have my own assumptions. I doubt I've ever had acute pancreatitis before (but I could have, I suppose), but I bet I've experienced "mild" pancreatitis a few times as well as sphincter of oddi dysfunction. A few oldtimers here know that I've had quite a time of things for a few years. I seem to spasm everywhere, though not so much in the colon, the more typical place to spasm. I had major emergency gyno surgery in Dec. I've had various infections this spring, as well as this horrid pain starting up and then gallbladder surgery. On top of that, I am being treated for possible gastritis or an ulcer, which I get after antibiotics. And I have near-daily flu-like symptoms, lessened slightly if I don't go outside. In short, I'm a mess - and I don't have much of a life! Thank you, everyone, for responding to this thread.


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## LaurieJ (Sep 3, 2002)

Hi everyone,Just wanted to leave a note for TechChick - to see how your ERCP went today. I hope it went well and was able to fix whatever was wrong with no complications! I also want to say that it was your information that you posted last fall and over winter that led me to investigate the possibility of SOD and stuff this spring. I used your posts to give me a direction to investigate, to convince me that I was not crazy, that the doctors were wrong when they kept telling me it was "all in my head". Because of that, I became more aggressive in looking for someone to get to the bottom of things. Thank you!HipJan, I was unaware of the vast history that you have concerning these issues. It seems that pancreas problems rear their ugly head after numerous abdominal surgeries. I wonder what the link is? I too had emergency gyn surgery, which led to emergency abdominal surgery, which lead to gall bladder removal, which led to SOD, which lead to (possible) chronic pancreatitis. Interesting progression similarities.As far as the birth defects that were mentioned in the previous posts, they all sound to me like "pancreas divisum". Depending on how you describe it, it can be reversed ducts, a "birth defect involving the ducts", etc. So it seems that this may be a common denominator in those that experience symptoms of chronic pancreatitis.Hope you all are doing well! Keep in touch!Laurie


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## Hoytie (Sep 16, 2003)

I had pancreatitis a few years ago. Unbelievably, I did not have much pain. However, I had the worst case of nauseousness, belching and debilatating indigestion I have ever experienced, along with elevated amylase and lipase levels. To make a long story somewhat short, I eventually had an ERCP because I could not stand the constant nauseousness that would occur two hours after eating something that had a bit of fat, I was down to 83 pounds and there was no explanation as to the cause of the pancreatitis. It was found that I had an annular pancreas, which is a condition much rarer than pancreas divisum. A stent was put in to prevent another case of pancreatitis after the ERCP and taken out two weeks later. I began to take enzymes (Creon) with meals. I did not find they helped very much. I was hoping the enzymes would allow me to eat something other than Marino's Italian Ices and jello. Maybe some potato salad? Forget it. Potato salad has mayonaisse, which means fat, which means nauseousness two hours after consuming it, which means feeling sick to my stomach for at least 24 to 36 hours after. Plus I have since been told that pancreatic enzymes are usually only given for pain. Anyway, I feel for everyone with pancreas problems and send my prayers. Oh Yes! The ERCP is a piece of cake.


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## lizzy (Jul 5, 2002)

well it is great to find some people who know about pancreas problems, I have to say I think the doctor thinks it is all in my head, after having the accute attacks last year, and now that my amalaze and lypase are at normal levels again, I really do not get a response from him, I was perscribed morphine for pain, but I hate the way that makes me feel, so I do not take that, but other then that, he tells me to watch fat, and has no other answers, expect he really does not feel it is pancreas problems, boy is that frustrating, after having an accute attack for 4 months would you not think I know if the pain is the same? I guess he does not think so. I have read in a couple of places that fumes from paint, and chemicals can cause problems in pancreatis, I feel it must inflame the organ, and then cause it to swell a little which makes it hard for the juice to come out, just a theory. but when I go back to my GI doctor, I would like to discuss this with him, as my job involves using pains and things, so I would like to know if I am putting myself at any risk, or is the pain just there and not doing any damage, if anyone knows where I can go to find out this answer like your pancreas web sight could you give me that info, I really want to be able to go to see him with some information. thought he does hate when I even bring it up, yet I was sent to him when I was in the accute attack, as being one of the best in the area for pancreas. any help would be appreciated


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## HipJan (Apr 9, 1999)

hi, everyone. I had a bad, unhappy day yesterday. hubby was rubbing my back at bedtime, and I almost didn't want to lie down; had propped myself up as much as possible and still had bile reflux all night long, as well as intermittent pancreatic (I assume) pains. I will call the doc yet again, because my questions were never answered from previous calls. I now want them to get a move-on with things! if I need to be referred to the ERPC doc in the Med Center, then let's get going!


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## LaurieJ (Sep 3, 2002)

Lizzy,I did a google search using "pancreas" first then searching within results using "fumes". Alot of sites were listed and it seems that there is a strong correlation with fumes and chronic / acute pancreatitis. I think you should do this too, to see if there is any relelvant information that is specific for your case and that can be shared with your physician. You have a valid concern, it seems to me. The pancreas support group that I interact with is located at the yahoo.com site. Hit search and put in the word pancreas and it should come up (I am not sure if protocol allows us to post the URL on here - if it is ok, I will do so)HipJan,Sorry that you had an awful night. I hope that the doctor gets back to you soon to give you immediate advice and also to get the ball rolling on follow-up care. Maybe a MRCP is indicated to see if you have any residual gallstones? Keep us informed.As far as me, I received in the mail last night a huge packet of information from the new doctors office concerning my next ERCP. His staff sent me detailed information about the procedures, how to find the clinic, what to expect, what to do about problems, getting results, a qualitiy of life survey, etc. This is the first time that I have encountered this when going in for procedures and I have to admit, it impressed me. I have a good feeling about this - if they are this conscientous with the actual procedure I think I am in the right place.Tech Chick - any news?Hoytie,Thanks for your story, I am going to have to look up the annular pancreas. Are you feeling better since the ERCP? Are they considering re-stenting? I had a tiny bit of alfredo covered noodles last night for supper and it drove me wild - I guess that it was the fat? Even though I only had less than 1/2 cup? How do you estimate fat intake and figure out when you have crossed the line? I am puzzled by this whole thing.Laurie


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## lizzy (Jul 5, 2002)

laura thanks for the info I am going to look it up


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## HipJan (Apr 9, 1999)

I faxed some questions to the doc's office, and then the nurse called and worked me in for Monday. Sigh. Meanwhile, I'm eating a lot of rice and other grains, noncream-based soup from Whole Foods, etc. Things are somewhat calmer, though my back is still sore, even my muscles, I think.More updates, anyone?


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## LaurieJ (Sep 3, 2002)

Hi HIpJan, LizzyHope to hear soon from TechChick, kinda concerned about how her procedure went.I hope you can find good info, lizzy from your search.And HipJan, sorry that you have to wait, but I think you are on the right track as far as what you are eating. My diet is basically eggs, pasta, rice, pudding, BOOST and more BOOST, potatoes and veggies. This seems to be the least painful food choice unless I add sauce to the pasta or too much cheese (an alfredo based sauce is extemely painful). Did the nurse give you any idea what is up with you? or what tests the doctor may order? or any suggestions on managing this until Monday?I am getting physically and mentally prepared for my ERCP tomorrow. Went to the bookstore last night and bought 2 big bags of books (some are for my husband though). That way if I have to stay more than a night I will have lots of reading stuff to choose from: fiction, non-fiction, puzzles, magazines, etc. I can't eat anything red tonight and then only clear liquids until 8:00 tomorrow morning, then nothing after that except for a antibiotic pill. Not even my pain meds they said. That may be a hard thing to do, harder even than not eating. Other than that, nothing new!I really hope you can manage your pain and be able to feel alittle bit better over the weekend, HipJan. Let me know if I can help you prepare for you appointment with him on Monday. If you want to practice on me, you can!LauriePS - I'll check in tomorrow before I go to the hospital, but then I'll be away from my computer until Monday (unless of course, there are complications).


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## HipJan (Apr 9, 1999)

Hi, L! Hope you see this post. I will be thinking of you tomorrow, sending you many good thoughts and praying there will be no complications.







Hope you aren't in the hospital long enough to get very far into that bag of books!No, the nurse didn't help much. She did suggest that maybe Glucerna would be better for me than Boost/Ensure (I've been drinking those too!), because it has less sugar. I already have my questions lined up, and at least this doctor does listen and is poised to send me to the specialist for the ERCP. So.... I am also going to revisit the idea of taking antispasodics, to at least help relieve some of the other spasming problems throughout my body. We'll see...At any rate, I wanted to wish you well for tomorrow. Time for me to go eat my millet mush, steamed chard, and pea soup.







Everyone else, please check back in here!


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## LaurieJ (Sep 3, 2002)

Hi HipJan,I saw your post, thank you very much for the well wishes. I am going to be leaving in the next hour. As far as I am concerned, let's get it over with. The not eating isn't hard, didn't expect it to be as that is a way of life. But the not taking the pain meds has been pretty awful. But the one good thing about it, is that it does reaffirm that something needs to be done. The last few days, having the meds again, started to make me think that things are not that bad after all.....but now I know better. Boy do I hope this works!............I'm sorry that the nurse didn't have many helpful hints. Although I didn't know that about the Ensure / Boost thing about the sugar. But I never heard of the other brand that you mentioned. I hope you have a good appointment with your doc on Monday - let us know.Laurie


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## bellyknot (Jul 24, 2000)

Lizzy,Just some advice on the pancreas thing. Get a copy of your records for any tests you've had. I had one doc tell me my pancreas didn't look too damaged. I got the CAT scan results and it said.Severe Chronic Pancreatitis, with multiple dense calcifications throughout the head and tail, and atrophy.Not too Bad? What the hell! This guy diagnosed me with IBS and just didn't want to admit his mistake. I knew it wsn't IBS because I'm not really C or D and have had constant pain for 7 years now. 2 weeks ago I had an MRCP, and finally got impatient and called. Was told the doc was at another facility and would call sometime next week. he report has been in for a week and he hasn't read it I'm sure. I'll request a copy of this one too and he knows it. Now that I'm done ranting I just wanted to suggest that you get copies of all your medical records and keep them.Ya never know...


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## HipJan (Apr 9, 1999)

good advice, lizzy. I'm sorry about your plight.








I think my gastro doc was right on when late last spring he told me he suspected there was a problem with my pancreas. the catscan at the time didn't reveal anything, but the pain continues.laurie, are you back yet?


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## LaurieJ (Sep 3, 2002)

Hi!I am back. This one was rough, lots worse than the first one. Even the general anesthesia was worse, both going under and waking up. There has got to be a better way to do this.I do have pancreas divisum; with the smallest minor papillae that the doc has seen in two years. He cut it because he couldn't get the wire in to do the tests then he put in a stent. I haven't talked to him yet about what happens next etc, but from what my husband remembers from his talk with him on Friday, I am suppose to go back in six weeks for another stent placement then again 6 weeks later.Right now I am feeling a little ickky , not much of a brain here- wish I were home in bed. But sometimes too much bed rest makes recovery even slower.LaurieAs far medical records are concerned: I agree wholeheartedly. I was the one who discovered that the radiologist saw pancreas divisum on my MRCP when I gathered my records for the second opinion appointment. The old GI doc knew about this since the middle of May and NEVER!!!!!!!!! mentioned it to me. When I brought up the report to the new doctor, he jumped on it right away and a week later had me in his "surgery" doing the ERCP and confirming my pancreas problems. I too was diagnosed three years ago with IBS based solely on pain - no D no C. And I too think that the original GI was so set on this diagnosis that he ignored (and hid) evidence that pointed to something else. I am a litlle upset at the whole thing and agree that you need to get your medical records and to find another doctor if you feel that the one you have is neglecting something significant. I have lost three years of my life to this pancreas problem and am pretty bummed out about the whole thing.HipJan,What did you find out at your appointment Monday? Did it go well?


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## HipJan (Apr 9, 1999)

Well, Laurie, ooh, I'm sorry it was so rough this time. Are you in the hospital now, writing this from there?







Please do take care, and write more when you feel better and know more about what's going on.Yes, I had my appointment. Long story, but I'm glad that I read up before my appointments and that my doc listens to me. I'm trying two new meds, one a lesser-prescribed antispasmodic that I specifically asked about, and a brand-new med for both soaking up bile and lowering cholesterol. It is easy to see that I am having a real problem with bile going places where it shouldn't. The doc doesn't know what to think about my horrid back pain; he is now doubting whether it could be SOD. He isn't sure about the pancreas yet either. I seem to have a problem with wrenching stomach/intestine pain, maybe gas, but the doc doesn't know that it's gas I'm feeling in my back too. So, he just doesn't know. Finally, finally he agreed with my request for bloodwork (though we're kind of late for the pancreas!), so I will get the results later this week and then go from there. Thanks for asking.Meanwhile, think gentle, healing thoughts - and I will continue to send good wishes for you!


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## LaurieJ (Sep 3, 2002)

HipJan,I was released from the hospital on Saturday morning even though my pancreatic enzymes were significantly elevated. At the time, I had minimal pain. But once I got home, the pain really started. Was really bad until Sunday afternoon. Was able to eat and drink then, finally. Ate a little bit on Monday (stayed home to rest) but then yesterday, pain came back with nausea and I wasn't able to eat or drink until late at night, after I left work early, took a pain pill and a nap. I was sooo happy to just being able to swallow soda and eat a cheese sandwich!I am happy that your visit with the doctor went well. I hope your lab values will give him a clue about the back / intestinal pain. Why has he backed off from the SOD? Because of the nature of the pain? Is he still leaning towards more diagnositic tests, like a CT or MRCP? Hopefully, though the new meds will make the pain go away - if so, this will be a good way to get to the bottom of things and to let time heal. I have found that it really takes a long time to heal (longer than we expect sometimes) and making it through this period is what is important.Let us know how things go with the labs, the new meds and the docs procedures. It really sounds interesting.Laurie


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## HipJan (Apr 9, 1999)

I hope your ERCP helps you more this time and that you can finally eat more. Did the cheese sandwich stay down ok?Well, in the next day or two I'll prob get my bloodwork results. The doc doesn't know quite what to think, since my symptoms aren't the most typical. He thinks the pain isn't in the right place for SOD, and he wants to try out the new meds for a while. So far, the antispasmodic has provided some relief but does not seem to be a "cure." Maybe I in fact don't have SOD, because lately I have been having a real problem with bile going everywhere but where it should (small intestine to help digest food). It's pretty painful. Well, anyway, more later!


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## HipJan (Apr 9, 1999)

Laurie, feel free to PM me anytime. I am still thinking and wondering about, and pulling for, you.Guess what? I will have labwork done next week for parathyroid disorder. The gastro doc wants to go that route for now. If I had that type of disorder, that could explain many things, including maybe some of the weird pain I've been experiencing all over my body lately.I PM'd TechChick the other day but never heard back. I hope she's ok. Looks like this thread is nearing an end. Thanks again for the replies, everyone.


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## LaurieJ (Sep 3, 2002)

Hi HipJan,I hope that this thread is nearing an end as far as all of us finding answers to our problems (and solutions). But I hope that we can continue this dialog as needed (PMing is a good idea - seeing that it is becoming more personal). I am very curious about TechChick and if you hear something that you can share, let me know. I am concerned that her ERCP didn't go well.I also am wondering how Lizzy is doing with her research about fumes and pancreatitis - Lizzy - any news????? How are you?The parathyroid question, in my opinion, could be the culprit with your weird pain. I have a friend that has this and at first it seemed that she had some kinda rheumatological problem (she had really sore, aching and swollen joints - muscle pain too). If that is it, I would imagine that the surgery would be the "cure". I hope for your sake, that this is it. Then the problem can be taken care of and the other stuff may then settle down too. Keep us informed; it sounds like we are all making good progress!Laurie


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## lizzy (Jul 5, 2002)

I have my doctors apointment on tuesday so I am going to bring it up. I really could not find anything specific, I hope I will not seem like I am just crazy, I also have ulcerative colitis, though the doctor claims I would not have pain up so high, when I had a capsal endoscopy they only saw that all my viens in my small intestine were inlarged, so there answer for that was, that it is because of the pancreatis, would cause that, though I really do not think they know the answer to why that was happening, have you guys heard of that? I guess I just really would like some answers though I know the pancreas is a hard thing to diagnose so I am sure that is why the doctor keeps thinking it is just scar tissue, from the attacks last year. though at times it is hard to get through just never feeling well, I do have some good weeks, but around my period things just seem to get worse, not sure if it is the pancreas or the ulcerative colitis, but the up high pain is what bothers me, not the low down pain, do either of you have sharp pains in your chest? when I had the attacks they said it was transfered pain from the pancreas, I am just wondering how your pain feels, most of the time mine just feels like someone punched me in the stomach and the feeling just stays with me, though this week I am feeling very nauseous all the time ecspecally when I eat, it just reminds me of the attacks all over again. any info you can give me will help thanks


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## HipJan (Apr 9, 1999)

Well, again, we don't really know what's wrong with me. However, my pain has been epigastric (just below sternum in front) - a tied-up-in-knots feeling generally relieved by an antispasmodic - and especially bad pain in the back, under the ribs, somewhere in between the bottom of my shoulder blades and my waist, usually more on my left side. Yesterday I didn't take an antispasmodic, and I did horribly last night and this a.m. with pain. I also have weird stuff going on, like pain in my arm(s) and legs (and sometimes just about everywhere). Again, this is kind of a mystery for me. Oh, I just had some chest pains yesterday; for me, felt like a gas bubble maybe.Good luck, lizzy. Please let us know how it goes.


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## LaurieJ (Sep 3, 2002)

Hi Lizzy,Just a quick note on the pain, as I am about to head home (just waiting for my ride). My pain is epigastric: absolutely feels like being punched in the stomach (with feeling very bruised afterwards). In fact those are the exact words that I used to describe it to my doctors. Also have a tight rubberband like feeling across my lower rib cage, circling my body. This week, while I have known mild acute pancreatitis from my ERCP - the pain is very dull, achy with sharp stabs to the left side epi-gastric. And the back between the shoulder blades. I can describe it as having a basketball in my tummy - stiff, sore, achy, hard. Nausea too, when I eat and sometimes just have it. I hope you have good luck with your doctor on Tuesday and I would think that they would consider looking at you pancreas a little more carefully. Especially since you have had a documented attack. I would think that would give them reasonable cause to investigate this.Laurie


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## bellyknot (Jul 24, 2000)

Hi Lizzy,My pain feels the same as yours, like someone punched me. It also radiates to the back. I hate this pancreas thing! My MRCP came back showing no blockage thank God. I've asked for a copy of the radiology report so I can read it myself showing exactly what they did find. Anyway my doc decided ERCP was not warranted at thsi time and for that I'm glad.Hope you are feeling better today. The only thing that helps me is Vicodin and NO food. I'm losing weight but that's O.K. as long as I don't go too low. I feel like I'm 90, no reason to look that way too. I'm 54.


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## HipJan (Apr 9, 1999)

Oh no. My pain sounds so similar! I told the doc I feel like I'm being strangled in the epigastric area. I feel like I have a rock in my back. I can't tell any difference btw how I felt before GB surgery, except that this is more constant now (unless I'm on antispas.). I am now wondering when I had actual GB attacks as opposed to this stuff.But tell me, 1) do any of you also have esophageal spasms alternating with reflux? 2) Have any of you tried antispasmodics for relief? At least, I do get some relief from them, but then they relax my esophagus so much that I get (bile?) reflux. 3) Do any of you also have weird pain, like I do now, all over your bodies?


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## bellyknot (Jul 24, 2000)

HipJan,Antispasmotics don't help me at all, in fact they seem to make my problem worse. No fat and tiny meals which really means snacking here and ther is the only thing that controls it. Which antispas do you take? I have tried Donnatol (the best one for me) Librax...blech, made me depressed and didn't work. A couple of others but it's been years. Does your doc still think that your pain is IBS related or is he/she leaning towards the pancreas problem?


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## lizzy (Jul 5, 2002)

well I know one thing that the doctor looks for with me, is am I loosing wieght, it seems that is the only time anything can be taken seriously, in the last year since my accute attacks I have gained 8 pounds, so the last time I went to the doctor telling him about the pain, he said well you are gaining wieght so your pancreas must be absorbing the fat, so I know that is why I am not taken serious about this pain, the last time I went to him, he gave me an antispasmatic, but I did not like the way I felt on it, and when I discribed the pain, he came back with sounds like it could be muscle to me, I looked at him like he was crazy, I just got over the pancreas attacks, I think I realise after being on TPN for 4 months what the pancreas pain feels like, so after that I have lost alot of faith in the whole thing, I guess when you get down to it, what can they really do about it anyways, if it is scar tissue that is on the pancreas. I have morphine for the pain, and I take the digestive emzines, so I am not sure there is to much more he could do anyway, I guess I just do not like that he does not take it very seriously, or better yet to blame it on IBS or my ulcerative colitis, yet the pain is up so high he knows it could not be caused from the colitis. it is all frustrating, and I know when I go and see him, I am going to get the same old reply, I am not sure that it could really be your pancreas, after all the attacks they did a MRI with contrast and deducted that I had no damage from the attacks, but wouldn't scar tissue form later then right after the attacks? well I will keep you all posted as to what is happening, guess I am getting a little bummed out that I may have to be like this from now on, and I will have to learn to deal with it, thanks everyone for your response, it is good to see my pain sounds like everyone elses.


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## HipJan (Apr 9, 1999)

bellyknot, hi, my doc has never mentioned "IBS." at least he's never been one to blame everything on that. but right now, he is somewhat stumped. my entire digestive system appears to be in an uproar, so it's hard to know where to begin. I really think I have multiple things going on. I do have a bad stomach, ever since my long-term stomach infection, so that always seems to be at least part of the problem. but I think it's pancreas* too. it's apparently also now a calcium/magnesium problem, as I've had before (my weird pains and spasms all over the place).by the way, I wanted to suggest to everyone with major digestive and/or pancreatic problems to *have your serum mag and cal levels checked*. I read that, among other things, pancreatis and fat absorption problems can cause those minerals to become depleted. when that happens, you have a lot of other problems in your body too.b, I am taking the antispas/antichol Pamine. I don't seem to get many side-effects with it, and at least some of my pain is lessened so that I feel partially human at times.lizzy, I've been losing weight too and suddenly look yucky skinny. I will mention that to the doc in a few days, when I talk with him after my next labwork results. it's normal for people who've had gb surgery to lose weight, but it's not normal for people to get this sick, I sure wouldn't think.*why do some of us who have had our gb's removed have pancreatic problems or vice versa? it all has to do with fat absorption problems, I guess, but I don't fully comprehend the connection.this is for all of us!


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## LaurieJ (Sep 3, 2002)

Hi Everyone,Just checked in on the conversations from over the weekend. My understanding with pancreas problems is that doctors cannot cure the problem but only manage the pain, malabsorption, etc. So, if the doctor isn't willing to acknowledge that there is a problem with the pancreas, it is hard to get pain control (they are reluctant to treat pain alone without a reason to justify it). And to acknowledge that there is a problem takes objective proof - which as lizzy stated, is really hard to come by as chronic pancreatitis rarely shows elevated enzyme levels and radiographic changes may take many, many years to show up. As far as weight loss, in my experience, even then, your complaints are not taken seriously. I lost 50lbs in my first year after this started and the response I got was "as long as you don't look like a concentration camp victim you're ok".It is only now, when I have proof from my ERCP that I have pancreas divisum with a stenotic minor papilla am I taken seriously, and then, only by a doctor that specializes in pancreatic disease. Other, more run of the mill GIs, still do not take this as a "real" disease that needs to be treated. So, the only advice I can give you is to find a GI that specializes in pancreatic disease and then realize that there is no "cure" only management and that both you and the doctor have to be in agreement on a short term and long term plan. My diagnosis took three years, 3CTs, 3 USs, 2MRCPs, 2ERCPs, 1 gallbladder surgery and countless blood tests, x-rays, consultations, etc. So, this is not an easy thing for doctors to diagnose or even to consider as a diagnosis. You have to keep looking for a doctor that will work with you!Personally, I am very discouraged about how all of this is going for me - each time I go in for my treatment I end up feeling worse than before, but am thankful fhat at least it is not a malignancy and that I have a doctor who has recognized a problem and is willing to try to manage it.laurie


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## bellyknot (Jul 24, 2000)

HipJan,So do you think I should go ahead and have an ERCP? I'm seeing a new GI on the 4th of November. She's supposed to be the best in our area and a specialist in hepatology. This is good for me because I also have Hep C. My other doc wanted me to do treatment. FORGET IT!! My enzymes have never been elevated and I'm not a good candidate. It takes 1 full year with a 40% clearance rate, among other side effects like MAJOR depression, fever, hair loss , anemia, etc. it also can bring on pancreatitic attacks. Is this guy CRAZY?!!I told him no and he sent me to a psych. Anyway I fired him and hired another. Hope she knows something about the panc.Also hope you are feeling better.DaBombmom, I still have my GB and my function test came back fine. I was told though that it's a 50/50 chance the GB removal will help and could make you worse. Think carefully before doing this. I don't trust the knife.


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## lizzy (Jul 5, 2002)

well back from the doctors, as usual he does not think it is the pancreas causing problems he thinks it is their pat answer of IBS, I have come to realise that they use that for everything they can not explain. though I talked with his partner who came in first, and he totally thought it was the pancreas, either way, I realise there is nothing they can really do for it, as I take the pancreas emzines already, so I think it is something that I have to live with. though it is frustrating all the same. either way I came out of the doctors with no more answers then when I came in, they said my wieght is stable so I think that is all that matters to him, it would be nice if at some point these doctors understood what it was like to live in chronic pain, then maybe they would understand how frustrating it is to not be acknowleged that the pain is there and real, and upsetting. I think my days of returning to feeling good all the time are just a pipe dream, but as he said it could be worse.


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## bellyknot (Jul 24, 2000)

Lizzie,I think we have the same doctor. Maybe he travels.Mine says the same thing. I've decided that yep they're right there is nothing they can do, or that I would let them do. All I want is for them to acknowledge the pain and admit that it is my pancreas that is causing the pain. I have been going to the pain control classes at my HMO and have learned alot about how to deal with the day to day pain, not the out of control stuff. I hope you are feeling better, I know how frustated you are....me too.bellyknot


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## HipJan (Apr 9, 1999)

hi, I'm frustrated too. bellyknot, I don't know if you should have ERCP. I didn't quite understand your post above your last one.







my gastro doc wants to do no more tests, not even an MRCP or an endoscopy (I DO have stomach problems among other things), until I see what an endocrinologist says. NOW I also have a slightly overactive parathyroid; it feels like it's majorly overactive, though. the doc thinks that could be causing some of my GI pain/problems as well as other newer funky symtpoms. like, right this moment, my legs are being "attacked," and I feel like they could buckle and cause me to fall down. I never get any rest, though luckily, Pamine at least seems to help relieve some (not all) of the epigastric and mid/upper back pain.from my reading, I understand that I could easily have a tumor in my parathyroid glands. yet, I have spent half the day trying to get into an endocrinologist's office and can't. first, there aren't many in my plan. second, the nearest one is ten miles away (fine), but I can't get in until Christmastime. great.







I am getting aggressive and attempting to contact doctors without going through the silly schedulers. through internet searches, I managed to retrieve 3 doctors' e-mail addresses. one actually responded. I will have to get really pushy if I intend to get in to see someone within a month or so.meanwhile, I continue to deal with a messed-up GI system, and I still think it perfectly feasible that I may have had various pancreatic attacks and maybe SOD. good luck to all of us!


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## LaurieJ (Sep 3, 2002)

Hi HIpJan,Sorry aout your difficulties getting into to see the endocrinologist. I am wondering if you may want to try an ENT surgeon too, seeing that the therapy for the hyperparathyroidism is surgery. It may be a quicker route to getting someone to see you. Surgeons usually have spaces available for "urgent" cases. That way, he can do a doctor to doctor referral which is usually done within a matter of weeks, if not days, depending on the urgency.As far as BellyKnot, I think she was referring to the treatment for Hep C, in which they give you interferon and some other drugs. It doesn't have a very good success rate (recurrence is high) and it has some pretty significant side effects, like she mentioned. Usually it is not all that recommended unless you have the subtype that is very likely to cause cirrhosis. I am not sure about the ERCP question though. My thoughts are, if it quacks like a duck and looks like a duck - then the ERCP should be considered; or an MRCP, who knows if she or you have this pancreas divisum too? And the only way to find out is by doing the ERCP or MRCP.Anyways, gotta go, our pizza is ready for pick-up. I can do better with this on Monday. Have a great weekend everybody!!!!!Laurie


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## HipJan (Apr 9, 1999)

L, you have some good ideas! Are ENT surgeons the ones who'd be performing this type of surgery? Turns out that at the end of the day Friday, an office called me back, and their woman doctor has openings soon. I don't know her, but my GI doc and I both feel that maybe I should just go for it...esp. since I really ought to get in quickly now. Things are going downhill fast.Pizza?!?!







You can eat pizza? Does that mean you are feeling much better? Let me know.


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## LaurieJ (Sep 3, 2002)

Hi HIpJan,As far as I know, an ENT surgeon is proably the one who will do the surgery - they specialize in neck anatomy. I know that they are the ones who do biopsies and stuff like when needed. But the offer of the endocrinologist appointment is good too - especially if she can get you in soon. If a surgeon is needed, she can get you a referral immediately. Those doctor to doctor conversations can pull a lot of strings!As far as pizza - I am feeling better. The eating pain is going down, just a lot of movement pain. Because my appetite is so low yet, I try to find anything that will tempt me, even if all I can eat is a small portiion. Which is why I did pizza! A treat for my husband and a temptation for me. It worked out ok - no more or less pain than for any other kind of food.Let me know how the appointment making goes - hopefully you will get in real soon as it seems likely that the parathyroid could be the culprit - at least you have something to go on now.Laurie


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## RitaLucy (May 3, 2000)

HJ,I just read this post. Well not all of it. I might have to have the ERCP done also. I am having some weird pains lately myself. I am home from work today not feeling well at all. I have been in bed most of the day and taking Librax as it is the only med I have right now. I am out of bentyl. I am waiting for Al-Assi to call me. Ever since surgery I have been having pain and colicky like pains on my right side, more now over to the right side and under the ribs. Beginning Friday I started have some pain in the center and on the left. Last night I couldn't sleep because it felt like something was underneath my left shoulder blade all night and I can't move to well with all the pain in my upper back and sides. Today I said forget it..and I stayed home. I am scared now too that something else is going on. What could it be? I am not sure ...could it just be trapped G after I eat. A few weeks ago when we took Nena to the football game I ate the hotdog and had a bad night. Maybe it is totally diet related. They told me to eat anything I want and I should have no problems. Yesterday I ate a light salad and a homemade cup of soup and some oatmeal for breakfast. I was too sick to eat dinner. I will let you know what Al-Assi has to say to me...


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## HipJan (Apr 9, 1999)

Not you too, RL! Frankly, I wish Dr. H. would have given me an MRCP a while back, esp. since it isn't invasive. Most of my pain has been center and sometimes left. With me, I assume it could be bile duct/pancreas, trapped gas, pain from stomach (e.g., gastritis/ulcer irritated by bile), pain from hypercalcemia - or, frankly, all of those. Last night I woke up with chest pains - actually got out of bed and took a tiny bit of magnesium - and a pulse I didn't especially like. Scared the begeebees (sp) outta me.I am mostly very careful about what I eat.Isn't it awful?Yes, report back to us. Ask for bloodwork.


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## lizzy (Jul 5, 2002)

Hi you guys, well the entire time I had the accute pancreas attacks my pain was mostly in the heart, which made me think at first I was having a heart attack, the pain shot up my arm, but then when they found it was the pancreas they told me it was transfered pain, now that I am having all this up high pain, it is once again in the heart area, I always feel like maybe it is trapped gas, I am just not sure what it is, but it is sharp and hurts all the way around my ribs, but mostly I can pin point a spot in the heart, drives me crazy, I also have UC which can be very painful but nothing compares to this high up pain I get, though the doctor just dismiss it as IBS which I guess I would except but was on TPN last year for 4 months because of accute pancreas attacks, so in my mind is a little hard to ignore, I just wish I could get these attacks out of my mind, it seems like my doctor wants to forget it ever happened, and really can say my pain is nothing more then IBS so I just continue to have pains in my heart that goes ignored, I would not feel comfortable switching doctors as he is suppose to be one of the best in the country for pancreas attacks, so I feel best staying with him, and maybe he is right but I feel it is strange that the pain is the same as when I had the attacks and I never had this problem before I had the attacks and I have had UC for a year before the attack, and IBS for many years without this pain. frustrating to say the least, do you guys get the pain in the heart?


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## HipJan (Apr 9, 1999)

Well, yes, I've been getting chest pains lately. I also have the pain around the ribs - and elsewhere. There's just no telling. It's maddening, isn't it? If only we could feel a little better so that we could stay busier and, hopefully, also take our minds off this stuff for a while!What's TPN again? Enzymes? I've been giving myself enzymes, as a precaution.


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## LaurieJ (Sep 3, 2002)

Hi Lizzy,I don't get pain in my heart area - it is always in the right upper quadrant - where the liver is - and area right below the breastbone, where the stomach is. I also have the wrap around feeling in my lower rib cage - front and back. Everyone is going to feel the pain differently I would imagine. The telling thing for me is that you say it is exactly like what you had when everyone agreed that you had an acute attack. To me, that would indicate that a similar thing is going on - but there are non-related coincidences and maybe that is what your doctor is thinking right now. I believe that there is also something called pain memory, where your pain nerves get sensitized to pain and either react more strongly to small amounts of pain or are unable to "forget" the sensation of pain. Either way, when the doctor only has our verbal description of pain, and all lab tests, radiology and other diagnositic procedures come back negative it is almost impossible to find the exact cause. This makes treatment very frustrating for both you and him, I would think. It sounds like you are happy with his expertise - hopefully you can work together on finding a way to control the pain, even if you do not agree with the cause. Have you considered asking for a referral to a pain clinic? Laurie


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## LaurieJ (Sep 3, 2002)

TPN = Total parenteral nutrition. It is "food" that they give you through an IV when you cannot eat for extended periods of time or when you are badly malnurished. It is given via IV because your GI system cannot handle anything in it (which is why they do not give you a feeding tube). I had it when I was in the hospital for my really bad surgery 3 years ago. The stuff is very milky white, comes in a large bag and smells really, really bad when it leaks from the IV!Laurie


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## RitaLucy (May 3, 2000)

HJ,Do your ribs hurt on either side when you press on them. I noticed yesterday and today that when I press on my ribs on the right side and on the left side that I feel bruised. The pain I have today is in the middle stomach on the right side. I took 4 Librax yesterday. Today my face is puffy and I was very cranky this a.m. and of course I had the headache. I took 3 advil with the Librax to prevent the Librax headache that I get. My problem is too that I am very C since surgery which doesn't seem to me to be normal because where is the bile?I am so mad that Sabbagh didn't do the dye test during surgery for my bile duct. I think Al-Assi thought he was going to. I will be so mad if I have to have another surgery because he wasn't thorough enough. He said he doesn't do that test for the bile duct unless the liver enzymes are elevated with the pre-op blood work which mine were not. I also had radiating pain down to my right hip too last night and this a.m.I talked to my MIL last night and she said it sounds like I have a stone in bile duct. Great! I sure hope not. Wouldn't it show on the ultrasound?


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## HipJan (Apr 9, 1999)

Hi, RL,Yes, my ribs have felt like that before, sometimes in the front, especially in the back. Yes, I was given the bile duct exam before the surgery; sometimes, though, I wonder if having that done might have bothered my bile duct. I dunno. I'm sorry you feel so badly now and that you have to take all those meds. I take one Pamine (antispas) per day. It covers up some of the epigastric/upper back pain. Beyond that, I exercise regularly, when I'm able to, do relaxation tapes, meditate/pray, think positive thoughts when I can, etc. Sometimes I am able to "psyche out" some of the pain!Someone, not an MD, told me I must now be a vegetarian. We'll see! Actually, I eat a lot of beans and grains anyway.Some people produce the same amount of bile as before surgery and, as you know, the excess ends up in the small intestine. With me, it often ends up in the stomach (and esophagus) instead. However, some other people, I understand, immediately begin producing less bile than before (or, perhaps, your body already got used to producing less). So, you do not have D. Let me ask you a graphic question. What is the color of your poop? If it is clay colored, which mine was a time or two earlier, it means no bile. If it is tan/yellowish, I believe that means you are not absorbing fat well (and maybe also that there is not a great deal of bile?).What does Al-Assi say?


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## HipJan (Apr 9, 1999)

A stone in a duct may or may not have shown up on the original ultrasound. But you can get new stones, either right after surgery or anytime later on. I'm not saying I think you have a stone, however. It is just anyone's guess at this point. Could also simply be that your body cannot tolerate complex fat well now, which I would imagine might especially be the case if you are not producing tons of bile (but that's anyone's guess too).I read that drinking tonic water or seltzer water or something is supposed to help prevent stones.


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## LaurieJ (Sep 3, 2002)

Hi RitaLucy, BellyKnot, HipJan and Lizzy,Just wondering how you all are doing?Any news or updates?Laurie


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## HipJan (Apr 9, 1999)

I'm about the same for now: weird multisymptoms. I haven't had any animal protein for a week and barely any cholesterol (except the noodles tonight had a lot in them...oops). It appears that's my new lifestyle. Kind of dull and inconvenient, and hard to get enough calories. Them's the breaks.How are you?


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## lizzy (Jul 5, 2002)

Well as for myself it is much about the same, I continue to have high up pain, mostly in the upper left, and heart area, just drives me crazy not knowing what is causing it, and when I went to the doctors he just thinks it is IBS I told him the pain is exsactly the same as when I had the accute pancreas attacks, but he just does not want to hear that, not that they could do anymore then they are doing, I take the pancreas emzines, I have morphine for the pain, and if it has turned to chronic I think that is about all they can do anyway, I just have to live with it, I guess I would like the doctor to just aknowledge it that might help, but I am tired of trying to convince him, but having an accute attack for 4 months, only a year ago, I think you remember what that pain felt like, and can tell it when you feel it, so it just leaves me frustrated. the hard part it I can not seem to get a handle on what makes it better or worse, I know fatty foods brings on the pain, but most of the time, it is for no reason at all. hope all of you are doing well


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## bellyknot (Jul 24, 2000)

Hi All,I've been the same. Some good days, mostly painful days and nights. The best days are when I haven't eaten. I'm beginning to look like my grandmother. I caught a glimpse after my shower and had to laugh, I looked just like my grandmother. All my life I thought I had big thighs, now they hang like little sticks from my "too big" underwear.Lizzy, I could have written your post. I am having the same problem EXACTLY. I have my surgeon appt tomorrow and dont' know what to expect b/c it was my GI's suggestion not mine. I'll let you know how it goes and what he says.


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## HipJan (Apr 9, 1999)

oh, bellyknot, I shouldn't laugh, but I believe I look like your grandmother as well. yes, please tell us what your surgeon says.lizzy, I understand the despair. wondering if you've tried any alternative treatments, just so you can feel a little better. by the way, I don't quite "get" the fat absorption issue either. it's apparent I can't absorb much fat and that trying to do so causes pain, but WHY can't we absorb fat? everyone: with all the weight loss and malabsorption (I'd assume), haven't some of you found that you have other problems and pain all over your body in addition to the GI, panc., and bile duct problems? I'm a mess, so out of balance ALL over, and I would assume others like me are too. e.g., it's my theory that inconsistent or low mag-cal levels can contribute to, or maybe trigger or even cause, problems with sphincter valves/pressure. it's a vicious cycle: one thing leads to ir feeds on another which leads to another.


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## LaurieJ (Sep 3, 2002)

Hi everyone!I do the same as you guys do when I look in the mirror - the only thing is that I see my mother's face. It's not that she was skinny (just the opposite) but I see the drawn, tired, wrinkled look of my mom. I guess I can finally convince my brother that I am NOT adopted. (LOL).I am sorry Lizzy and BellyKnot that you are still being frustrated by your doctors. I do not understand, why in your case, Lizzy, that the doctors are not doing anything to find out why you had such a bad attack of pancreatitis. Depending on the cause, there are ways to treat the pain in addtion to pain meds and enzymes. For example, with my stenting, I have gotten some relief - starting last Saturday. I still have some intense background pain, but the eating pain has gone down so much. Ironically, though, my new pain management doctor says that I am NOT taking enough of my pain meds. How is that for an oppositive view! My old GI said I was taking too much (he wrote a script for 40 5mg oxycodone, every three months). My pain doctor wrote me 120 5mg oxys for 1 month. She said that I should have 4 pills a day available, even if I do not need them! So I feel so much relief that there is someone watching over this part of the disease process. No more having to ration based on availability. I feel that I can live a more normal life - try more things and if the pain level gets bad - I can counteract it with the meds.BellyKnot - I hope your visit with the surgeon went well. Let us know!HipJan - I think the whole fat problem is that we are not using our bile and pancreatic enzymes to the best of their ability. Either we are not producing enough, or it is not available to digest the food that we eat because of blockage or misrouting or something like that. You idea of the calcium / magnesium affecting muscle / nerve actions may be part of it. After all these are vital needs for a healthy body. And this whole pancreas, SOD, biliary dysfunction stuff is still so unknown and controversial in the medical psyche. So many doctors do not believe in "functional" disorders because there is not an obvious pathology that can be seen. But when it comes to nerve actions, who knows? We are not able to visualize actions on the molecular level yet. (Oh , how I long for the time when we will really have Dr McCoy's and Mr Spock's medical TriCorders! Then the mysteries of the body may not be so hard to discern!). As far as overall body aches and pains - in my case, I do not experience that. Maybe the intense pancreatic pain masks this but I do not think so. I consider myself very fortunate that I am not dealing with joint, muscle or other pain like that.So I hope all are doing as best as you can. I am feeling lots better since the after affects of my second ERCP have gone away. I am not looking forward the the next one (two weeks from today) but at least I know now, that I am doing the right thing.Laurie


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## HipJan (Apr 9, 1999)

L,Glad you are feeling better. Is your next ERCP to take out the stent? Keep us posted.My back pain (pancreas, liver, etc.) has lessened, for now, overall. I have not been eating animal protein. However, I have other pains elsewhere at about all times. Had to get up last night to throw an ice pack on my legs.


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## bellyknot (Jul 24, 2000)

Hi,Well, I had my surgeon visit and it was a real eye opener. He said my pancreas was so calcified and sclerosed (he looked at the MRCP) that I now have NO options as far as surgery. He said pain control and diet were all he could offer. He was however quite amazed that I am not diabetic yet. This is coming up he says but the fact that I do look like Grandma Jenny and am underweight is a good thing. He said if I were 195lbs as opposed to 95lbs I would surely be diabetic by now. Anyway take heed because he said if they had done surgery in 93' when it showed stones in my ducts through ERCP my pancreas may not be in the shape it's in today. Ah!!! You were supposed to laugh at the legs thing. I laughed too. Gotta have a sense of humor ya know.


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## lizzy (Jul 5, 2002)

Boy, I am really sorry to hear your pancreas is in that condition, it is amazing you are not a diebetic, I hope you can get your pain under control. I have a question to ask if this had happened to you guys, I have had this before and it went away, but it is back again, so I am wondering if either of you have insight, I have this feeling like my food is not digesting, my entire insides feel like they went through a meat grinder, and my whole colon is spasming, making all sorts of noise, I am having a hard time eating, as it makes it worse, and feels like the food is up to my neck, I am sure just a sensationbut I keep burping, I ate very little yesterday one piece of toast, and today just have terrible pain, I went to a book store yesterday and was looking some stuff up, and it really seems like it is my pancreas area, that is affected, yet I can not get the GI doctor to even entertain the thought and I just do not know why, he is so opposed to thinking it, except for the fact that I am able to maintain my wieght so he can not take the pancreas seriously, this is all getting me so upset, as I am not even sure how I am going to make it to work today, I have an extremely physical job, I am a display manager, for a department store, and we are putting up christmas, with alot of pressure on a deadline, so I am sure that stress is not helping, but I thought if either of you have had this problem maybe it could be the pancreas, and not IBS as the doctor thinks, thanks for you help


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## bellyknot (Jul 24, 2000)

Lizzy,I have the same pain as you and my docs also dismissed it as IBS. I don't know what the hell is the matter with these guys except that they don't know what to do with pancreatitis. Insist on follow up tests such as ERCP and or MRCP. With your history that doc is being negligent as was mine. The only thing that isn't the same as my problem is that once I quit eating, my pain subsides, depending on how fast my stomach empties. Mostly it's slow going. If you can, get a new GI.


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## HipJan (Apr 9, 1999)

No, they don't know what to do about chronic pancreatitis or a host of other things either. Modern medicine is not good at "chronic" in general. How is everyone lately? I'm very careful with my diet but have had a bad time recently with bile reflux from hell, those lovely pains in the back, burning stomach pain, scrunching-up epigastric pain, etc.Laurie, is it about time now for your stent to come out? How are you?P.S. L, you said you could eat eggs, right? I am going to add those in occasionally, because I have a hard time getting in enough calories and protein on a strictly plant-based diet. For thyroid reasons, I have learned I should now severely limit my soy too. It's easier to say what I CAN eat!


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## bellyknot (Jul 24, 2000)

Hi,Not doing to well lately







I had an appointment with my new GI yesterday and she confirmed the "can't do anything for you" diagnosis on my pancreas. She said NO ERCP!! Because I haven't any enlarged ducts indicating stones and such a sclerosed pancreas that the danger of another attack would not be worth it. She took me off of HRT and wants me to try Neurontin instead of Vicodan. I think I'll try it. Any of you try this? Also have you had a gastric emptying study for gastroparesis? She stuck her fingers of steel up under my mid-right side up under the ribs which hurt so bad I couldn't breathe. I've always wondered why people just sit there and allow a doctor to cause them pain. Well, now I know. You are completely incompacitated by it. She indicated that it is where my large intestine is, but also that the pancreas is related to this problem. Now what? I don't know. She walked out of the room and said to think of anything else I wanted to ask before she came back. Well, she never came back. Sent the assistant in instead to ask if I had thought of anything, a quick goodbye and out the door. I wish I had something that was more prevalent and that dr's would talk to me instead of just ignoring what I say because they simply don't have an answer. Ah! enough whining.







Hope you all are doing better.


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## LaurieJ (Sep 3, 2002)

Hi HipJan,Yea I go in tomorrow to get my first stent out and the second one put in. The nurse that called to remind me today mentioned that she thought the Dr's fellow will talk to me before the procedure to let me know what they found on the first ERCP and to answer questions concerning future ones and long term prognosis. So I am trying to get a list of questions printed out to have ready! Ran out of time tonight, so I am hoping I can do it quick tomorrow morning before I leave work to go in. I go in at 11:00 the ERCP - EUS is at 1:00. I hope that I have recovered enough by 5:00 to go home. But I am expecting to have to stay at least overnight again because of the last time's acute attack. But who knows? If all goes well I should be back here on Monday, Tuesday or Wednesday at the latest.As far as eggs - I don't seem to have a problem with those, that is above and beyond anything else. I usually try to eat some at least once or twice a week for the protein. I am not a meat eater usually and especially now, I avoid it even more. Any news on how it is going with you? as far as getting to the bottom of this and your parathyroid? Have you seen your specialist (endocrinologist / ENT?)?. I hope you are doing a little better.......Thanks for asking. I'll check in quick tomorrow morning and then for sure next week, unless I get "the big one"!Laurie


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