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.