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Crippling RUQ pain and SOD
Have had severe RUQ pain since 2007 about 6 months after GB removed for nausea. Never had GB pain. HIDA scan showed it working at zero percent. Felt better after surgery, could eat again but did have annoying diarrhea.
Pain started out of blue, went to ER for pain and dehydration I think, tests showed nothing, went home with Rx for hydroco and was told to see Gastro. Saw him and tests found nothing. He said take hydroco if that's what it took for me to get any pain relief so that I could eat or drink.
Same year changed gastros due to ins changes. 2d gastro said I had gastroparesis, slow stomach emptying, because I was taking hydroco and that pain would stop if I stopped taking it! Wouldn't listen that pain started first and while inpatient took morphine to keep under control! He said to learn relaxation exercises for pain control!
He said sometimes rare neuro probs could cause gastric motility probs so husband got me to local med school for neuro workup and learned I had Autonomic Nervous System Dysfunction--treat symptoms is all that can be done and he sent me to Pain Mgmnt dr and more gastros. These gastros also fixed on gastroparesis.
Later at Vanderbilt Autonomic Clinic 2008 saw Gastroparesis Guru who said no way pain was from gastroparesis or pain meds.
Pain dr put me on Fent. patch with hydroco for breakthru and baclofen, tried some invasive procedures, really tried to help. Finally went to oral morphine for breakthru pain because was trying to stay out of ER and pain meds weren't helping. Pain kept increasing and ability to eat/drink/move around got worse.
Evaluated for SOD in 2010 by dr who told me if I had ERCP I would get pancreatitis and die--scared us enough not to question. So from 2007 until 2010 the question of an ERCP was never raised to look for any source of pain. I feel like a lot of time passed spinning wheels waiting to see some specialist who had nothing to do or say about RUQ pain.
Had CT and consult at MD Anderson Cancer Center in Houston where pain dr. now practices in 2011. CT there showed possible liver strictures. That raised SOD question again, husband started faxing records outside state and prestigious insitution on E. Coast which shall remain nameless took me. Endoscopist gave long consult, disagreed with dr who said ERCP wasn't necessary and did ERCP next day. Woke up to him telling me he couldn't believe what he found-- a lot of scarring around sphincter. He did biliary sphincterotomy and put stent in bile duct because it wasn't draining and stent in pancreatic duct to reduce chance of pancreatitis which I got anyway and was inpatient.
Got out weak but was able to start building up diet. He said he didn't want anyone else touching stents so 3 wks later back for another ERCP. Again he said he saw what he didn't expect and did another biliary sphincterotomy but removed stents.
I had been slowly making progress while stents were in. About week after they came out I was back in horrible agony again, couldn't eat etc. Back to see dr in 2 months--these trips husband is hauling me in wheelchair thru airports--and dr says well what I did should have worked. Suggested I find a way to get a drug banned by FDA in US to see if it would help and aside from being appalled he'd raise something like that with the legal issues later learned it would have bad interaction with something I take for anoter condition. Final comments from him were basically that pain was real and it wasn't going to kill me.
Back home things got worse. Two trips to ER for pain, naus in 10 days, thinking I had pancreatitis. AT this point decide to go to Houston to have pain pump implanted to deliver medication directly to spine. Pain dr was shocked when he saw how much weight I had lost and issue of feeding tube came up. Had already seen 2 more specialists at home after ERCPs who treated me like a nut case. And it sounds nuts to say you have had this kind of pain this long.
I see a shrink to make sure I don't get depressed and to learn how to deal with drs who won't listen to me but the gastros in particular ask questions about depression without even checking with the psychiatrist who would tell them I'm not depressed I am in pain and frustrated by medical go rounds.
Pain pump in, all other pain meds stopped. Tiny tiny amount of morphine going into spine not enough to do anything. Periodic episodes of vomiting to point I can't get off bathroom floor for day. Somehow have put weight back on although I hardly eat anything.Mostly ensure and crackers. But if it avoids feeding tube I will stick to strange diet. If they could promise feeding tube would end pain I'd go for it but I don't have a lot of confidence in a gastro's decision on that esp considering another gastro said TPN would be the thing to do and other drs say it's too risky.
Am in so much pain go from bed to couch and can't talk on phone most days. Don't know how I"m doing message but in middle of night. If I can do anything around house at any strange hour I will do it but usually it's hard to have conversation with husband. I am going to try to get this pain pump turned up to point it might help but after reading some of your posts I'm hard pressed to think pain med is the answer for these gastro issues. Pain started in small spot below right rib cage and small spot seemed better after ERCPs. But over time even before ERCPs pain had spread all up under rib cage and to back. Sometimes more in back and under right shoulder blade. Since I never had GB pain I can't say if it feels like GB pain. I can say it is as intense and miserable as pancreatitis esp when nausea and vomiting start. If I have a really good day I might be able to go to church but can find myself on floor of bathroom unable to move from pain and often naus. later.
I read someone say they could barely get around house. Another person indicated that stents could be placed many times. I have been told by drs that the stents can't stay in. I'm not shopping for another ERCP because I know they are dangerous--I know someone who died after one. But if it's a risk of life like this only in my 50s to point I am mainly curled up in pain most of time, I'd like to have some options for treatment.
I wasn't surprised by anything I"ve read about people being blown off by drs even at well respected institutions. Apparently if you opt for pain management because a gastro can't figure out your problems, every other gastro who sees you will think it's the pain meds or worse yet that you're drug seeker or nuts.
I don't know how I could make trip but I keep seeing raves about drs in Indiana. I still don't know why endoscopist back East didn't refer me to another part of their gastro clinic to see if they could figure anything else out.
All drs tell me pain where I point is where liver is but liver function tests are normal and I'm not jaundiced so they say my liver can't hurt when they can't see anything on a scan. Early on was told I had fatty liver. Later was told it went away. But I have liver cysts and hemangiomas and again I'm told those can't hurt.
With pain moving so high in ribs have wondered about kidney issues but nothing has shown on CTs MRIs or lab tests about kidneys. However on this journey I have learned that all CTs aren't the same, etc because they use different protocols, etc.
Any ideas? Please tell me if I should have posted elsewhere and thank you for listening to new member who wants part of life back. May not see responses for while as can't be at computer much.
Pain started out of blue, went to ER for pain and dehydration I think, tests showed nothing, went home with Rx for hydroco and was told to see Gastro. Saw him and tests found nothing. He said take hydroco if that's what it took for me to get any pain relief so that I could eat or drink.
Same year changed gastros due to ins changes. 2d gastro said I had gastroparesis, slow stomach emptying, because I was taking hydroco and that pain would stop if I stopped taking it! Wouldn't listen that pain started first and while inpatient took morphine to keep under control! He said to learn relaxation exercises for pain control!
He said sometimes rare neuro probs could cause gastric motility probs so husband got me to local med school for neuro workup and learned I had Autonomic Nervous System Dysfunction--treat symptoms is all that can be done and he sent me to Pain Mgmnt dr and more gastros. These gastros also fixed on gastroparesis.
Later at Vanderbilt Autonomic Clinic 2008 saw Gastroparesis Guru who said no way pain was from gastroparesis or pain meds.
Pain dr put me on Fent. patch with hydroco for breakthru and baclofen, tried some invasive procedures, really tried to help. Finally went to oral morphine for breakthru pain because was trying to stay out of ER and pain meds weren't helping. Pain kept increasing and ability to eat/drink/move around got worse.
Evaluated for SOD in 2010 by dr who told me if I had ERCP I would get pancreatitis and die--scared us enough not to question. So from 2007 until 2010 the question of an ERCP was never raised to look for any source of pain. I feel like a lot of time passed spinning wheels waiting to see some specialist who had nothing to do or say about RUQ pain.
Had CT and consult at MD Anderson Cancer Center in Houston where pain dr. now practices in 2011. CT there showed possible liver strictures. That raised SOD question again, husband started faxing records outside state and prestigious insitution on E. Coast which shall remain nameless took me. Endoscopist gave long consult, disagreed with dr who said ERCP wasn't necessary and did ERCP next day. Woke up to him telling me he couldn't believe what he found-- a lot of scarring around sphincter. He did biliary sphincterotomy and put stent in bile duct because it wasn't draining and stent in pancreatic duct to reduce chance of pancreatitis which I got anyway and was inpatient.
Got out weak but was able to start building up diet. He said he didn't want anyone else touching stents so 3 wks later back for another ERCP. Again he said he saw what he didn't expect and did another biliary sphincterotomy but removed stents.
I had been slowly making progress while stents were in. About week after they came out I was back in horrible agony again, couldn't eat etc. Back to see dr in 2 months--these trips husband is hauling me in wheelchair thru airports--and dr says well what I did should have worked. Suggested I find a way to get a drug banned by FDA in US to see if it would help and aside from being appalled he'd raise something like that with the legal issues later learned it would have bad interaction with something I take for anoter condition. Final comments from him were basically that pain was real and it wasn't going to kill me.
Back home things got worse. Two trips to ER for pain, naus in 10 days, thinking I had pancreatitis. AT this point decide to go to Houston to have pain pump implanted to deliver medication directly to spine. Pain dr was shocked when he saw how much weight I had lost and issue of feeding tube came up. Had already seen 2 more specialists at home after ERCPs who treated me like a nut case. And it sounds nuts to say you have had this kind of pain this long.
I see a shrink to make sure I don't get depressed and to learn how to deal with drs who won't listen to me but the gastros in particular ask questions about depression without even checking with the psychiatrist who would tell them I'm not depressed I am in pain and frustrated by medical go rounds.
Pain pump in, all other pain meds stopped. Tiny tiny amount of morphine going into spine not enough to do anything. Periodic episodes of vomiting to point I can't get off bathroom floor for day. Somehow have put weight back on although I hardly eat anything.Mostly ensure and crackers. But if it avoids feeding tube I will stick to strange diet. If they could promise feeding tube would end pain I'd go for it but I don't have a lot of confidence in a gastro's decision on that esp considering another gastro said TPN would be the thing to do and other drs say it's too risky.
Am in so much pain go from bed to couch and can't talk on phone most days. Don't know how I"m doing message but in middle of night. If I can do anything around house at any strange hour I will do it but usually it's hard to have conversation with husband. I am going to try to get this pain pump turned up to point it might help but after reading some of your posts I'm hard pressed to think pain med is the answer for these gastro issues. Pain started in small spot below right rib cage and small spot seemed better after ERCPs. But over time even before ERCPs pain had spread all up under rib cage and to back. Sometimes more in back and under right shoulder blade. Since I never had GB pain I can't say if it feels like GB pain. I can say it is as intense and miserable as pancreatitis esp when nausea and vomiting start. If I have a really good day I might be able to go to church but can find myself on floor of bathroom unable to move from pain and often naus. later.
I read someone say they could barely get around house. Another person indicated that stents could be placed many times. I have been told by drs that the stents can't stay in. I'm not shopping for another ERCP because I know they are dangerous--I know someone who died after one. But if it's a risk of life like this only in my 50s to point I am mainly curled up in pain most of time, I'd like to have some options for treatment.
I wasn't surprised by anything I"ve read about people being blown off by drs even at well respected institutions. Apparently if you opt for pain management because a gastro can't figure out your problems, every other gastro who sees you will think it's the pain meds or worse yet that you're drug seeker or nuts.
I don't know how I could make trip but I keep seeing raves about drs in Indiana. I still don't know why endoscopist back East didn't refer me to another part of their gastro clinic to see if they could figure anything else out.
All drs tell me pain where I point is where liver is but liver function tests are normal and I'm not jaundiced so they say my liver can't hurt when they can't see anything on a scan. Early on was told I had fatty liver. Later was told it went away. But I have liver cysts and hemangiomas and again I'm told those can't hurt.
With pain moving so high in ribs have wondered about kidney issues but nothing has shown on CTs MRIs or lab tests about kidneys. However on this journey I have learned that all CTs aren't the same, etc because they use different protocols, etc.
Any ideas? Please tell me if I should have posted elsewhere and thank you for listening to new member who wants part of life back. May not see responses for while as can't be at computer much.
My understanding is there can be motility problems in the colon can bring severe pain, but I'm not sure if it would bring you to your knees or not. It's a question only someone who has been in that position could actually answer. Sorry, wantwellness, I just don't know.
CalGal thnks foryou for comments on this thread as well as the one where patient is facing colon surgery at Mayo after being ground thru medical world for years. I def have motil disorders due to neurol problems and she confirmed my experience that I have been told I hAve every test only for her to learn more. When you first kindly answered post SOD seemed culprit. now I wonder if motility issues are at least some part of puzzle. From what you know what is more likely to bring sharp pain under right rib cage to point can't tell if it will explode or implode bringing me to knees? And sometimes ice pick stabbing in back. What I have learned in few short days makes me wonder of I should go somewhere like Mayo so they can reconsider everything and refer me to another guru if not sure. You seem to know so much. Any thoughts? Thank you for being so helpful. I want to get better and give back.
Thanks do much for finding those posts. You are so kind. I too thought I would have to have man. to measure pressures but the dr who did ercps told me in consult before hand that based on all other symptoms etc he would skip it in my case I think bc more likely to cause pancreatitis and based on my symptoms and records he didn't think necessary. the other dr who told me not to get ercp had said man. was most dangerous part esp since he had decided apparently I was in class of SOD patients they don't think benefit from treatment because they are more likely to be psych cases -- not sure those were his exact words to me but saw similar words elsewhere. There is or was clinical trial going on at diff places to look at what happens if they either do or don't do the man. to see what happens. yet when ercp showed scarring that surprised dr who did ercp. Was most surprised to read in what you found that person ultimately was diagnosed with pancreas probs and had all that surg. My panc tests have always been ok except for post ercp panc. Other times I have felt like I had panc but tests showed no. sounds like other person went to Ind and then elsewhere to finally get resolution. can't imagine getting on plane in this shape-- was hard enough yr ago. know others in worse shape and don't mean to whine. May I ask if EUS is considered far out or dangerous when looking for diag. Never had one of those. pattern I see from posts sadly is often if dr doesn't know bc it's not seen often patients may be written off. Also see pattern of having to wait ages to see specialists so by time they are seen things worse. Will consider all you have said and thank you so much.
From speaking with individuals who have talked and been patients of the Indiana group, I believe it would be worth your time to contact them. It can't hurt to call and ask.
The information I have suggests that SOD can only be diagnosed via symptoms in conjunctions with an ERCP that has the added manometry step. Measuring the pressures in the duct is an important step in finding out what you've got.
I've tried to go back and find the post I referred to and so far I'm striking out. I'm going to try another way and see what I can come up with.
The information I have suggests that SOD can only be diagnosed via symptoms in conjunctions with an ERCP that has the added manometry step. Measuring the pressures in the duct is an important step in finding out what you've got.
I've tried to go back and find the post I referred to and so far I'm striking out. I'm going to try another way and see what I can come up with.
Thanx so much.Was shocked was able to post so much but failed to say that 2 mrcps done after ercps seem to be very impt for drs to conclude sod is not problem and according to drs neither is anything in liver area Not sure how that fits with dr who did ercps and said he never expected to find what he found but these mrcps seem to close the book on the sod issue-- altho I never had one before the ercps! I did not put names of any drs in post but should say that at least 2 of them are by publication and reputation etc leading sod experts inc the one who told me never to have ercp. It seems to be elite group and after seeing 2 of them who are not at Ind makes me wonder if people at Ind would give time of day. Ttruly don't know whether to think it is SOd or something else and get yr drift about bigger surgery but am very concerned about having things made even worse given what has happened so far. Does sod pain ever go to far right side and back?
Wantwellness, I'm sitting here with my mouth hanging open because my jaw is tired due to swearing about the treatment you have been given. There are times that I DO NOT UNDERSTAND THE ACTIONS OF SOME DOCTORS and this is one of them! I'm going to shut my mouth on some of the words I'd like to use since that's a subject for another day, but please do your body a favor and send your records to a doctor who specializes in SOD and get your case evaluated NOW.
From what I'm reading - and please understand I could be very wrong when I say this - but it's possible you are past the point of an 'easier' remedy and you may have to think about surgical anatomical rearrangements to your digestive system to be able to feel better.
SOD is NOT easy to deal with and it does sound like that is what you're dealing with.
I need to go back to find a post that was made some time ago concerning SOD and an answer that was written to that post by a woman who faced symptoms and problems created by SOD. It may give you some information you need. I'm brain dead at this point - long day. I'll go back through the posts tomorrow and get back to you as soon as I find it. But overall, Indiana is the place you want to be. Period. Get your records together and send them off tomorrow.
From what I'm reading - and please understand I could be very wrong when I say this - but it's possible you are past the point of an 'easier' remedy and you may have to think about surgical anatomical rearrangements to your digestive system to be able to feel better.
SOD is NOT easy to deal with and it does sound like that is what you're dealing with.
I need to go back to find a post that was made some time ago concerning SOD and an answer that was written to that post by a woman who faced symptoms and problems created by SOD. It may give you some information you need. I'm brain dead at this point - long day. I'll go back through the posts tomorrow and get back to you as soon as I find it. But overall, Indiana is the place you want to be. Period. Get your records together and send them off tomorrow.
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