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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,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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Discussion Starter · #5 ·
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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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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Discussion Starter · #7 ·
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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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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Discussion Starter · #9 ·
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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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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Discussion Starter · #11 ·
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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Discussion Starter · #12 ·
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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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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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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Discussion Starter · #15 ·
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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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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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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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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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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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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