Topic: Need help---ERCP?? Continuing gallbladder/liver/pancreas problems.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I need to figure out whether I should have an ERCP test done to see if there are little stones or any obstruction in the bile ducts, or any other problem in the liver or pancreas, or whether to just continue with my Actigall 3 times/day, Liver-Gallbladder Flushes, mini-Liver flushes, etc., and put up with the symptoms longer. But the symptoms are really tough to put up with for so long, not being totally sure what is going on.
I know that the ERCP is risky, and I hate to continue down an invasive medical path. However, I am continuing to have bad nausea on and off, to the point that it is very hard to eat often (I lost 14 #s), and I have continuing pain in the gallbladder and liver (not severe), and SEVERE back pain right behind my gallbladder. The GI dr is the head of GI at one of the best hospitals anywhere and is the tops in these procedures, so at least I don't have worries about his expertise and skill.
The background: I have been having severe gallbladder issues since February from rocephin, which I stopped at the beginning of March. I had had gallbladder problems in the past from rocephin, too.
I had 4 severe gallbladder attacks in February and March and ended up in the ER with very high pancreatic and liver enzymes (but the ER said no pancreatitiis, because they weren't 3 times the highest range of normal--only 2 times the highest range of norma--ha!).
I was off all tx for 6 weeks while my enzymes came down, and I continued Actigall at 3 times per day, instead of twice a day, as I had developed sludge in the gallbladder, but no stones. Rocephin can cause sludge and stones when it precipitates with calcium in the GB (= pain!).
I saw an excellent GI dr, who agreed with me that it was reasonable to try to save the gallbladder by taking the high dose Actigall over time to get rid of the sludge. He said that normally it takes 6 months, if it will work. But since I'm taking the Actigall at a higher dosage, it might take 3 months, if it's going to work.
I've also done LOTS and LOTS of Liver-Gallbladder Flushes and mini-Liver Flushes before and after all the attacks. And had lots of osteopathic work on my GB and back, deep-tissue work on my back, etc., etc.
My liver enzymes came down a while ago, and the pancreatic enzymes slowly came down, finally to normal.
BUT the pain in the gallbladder and liver and severe pain in my back, and the nausea so I can't eat much at all sometimes is getting hard to take for so long. I'm not at all sure that we have the whole picture yet. I don't know if there is an obstruction of a duct, if it is still just from the remaining sludge, or if I have
chronic pancreatitis now (as some who have it have suggested here), or what. And I've been back on IV again for a while now (doxy) and am back on Mepron (3 tsp), which is hard on the pancreas (and liver?) sometimes. When I feel particularly nauseous, I feel like it's too much to do the IV and Mepron, but I have mostly continued (skipped a few Mepron doses).
On top of everything else, I am in between LLMD's, as mine moved across the country, and I can't see the new dr until June 7. But most of all, I need to decide about the ERCP or what. The back pain is so severe and unrelenting, even through tons of bodywork, etc. This is not very good.
Who's done ERCP---any suggestions? I am doing a lot of natural remedies, which help, but are not totally doing the job at all. It's humbling when the remedies that you think should take care of it aren't sufficient. I do worry about chronic panrcreatitis and liver problems, too, although those enzymes have come down. It also makes me wonder if I should stop the IV and Mepron, etc. for a while again.
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sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
Rumigirl, if you were my sister I would want you to go ahead with the test. I think that your symptoms are severe enough that you need to investigate further to rule out every possible cause.
I would also hold off on the Mepron for awhile to see if that helps reduce your symptoms. I usually have a strong stomach but while on Mepron I felt horribly nauseous with reflux type symptoms and back pain. Can't help but wonder if maybe the mepron is making your symptoms worse. It would be worth a try.
Hang in there Rumigirl. You are strong and I know that you will make it through.
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i would not have the test. look up the statistics on how many people get pancreatitis from the ercp. it's pretty high.
if you still have your gallbladder, just have it taken out. while i have had problems since i've had mine out, it really sounds like you need to have it taken out.
the longer you let this go, the more chances you run of developing permanent pancreatitis, and God knows you don't want that. ever...
if you're determined to have any test done, look at the mrcp. it's a more non-invasive test and fairly accurate.
please, please, don't mess with your pancreas. as my gastro said, that's a very slippery slope and not one you ever want to go down.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
I agree with randibear. The risk of getting pancreatitis is quite high with the procedure, and taking out the gallbladder might alleviate some of those symptoms.
posted
Make sure you are eating NEXT TO NOTHING in the way of fats!!!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
I don�t know how long you�ve been taking all these meds?
I think you should consider stopping meds for a while, and see how you feel without them.
Talk to you doctor about this.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
I did stop all the Lyme & co treatment and IVIG for 6 weeks. I still had the problems. Although, it might (?) be worse with the TBI meds. And I have been skipping the Mepron more lately, because I just can't take it sometimes or get enough fat down
(you have to take it with a lot of fat!). I think I will stop the Mepron and Artemesia for now. Maybe I should consider stopping the IV doxy again. I have a short window to take that until the sun gets too intense, due to sun sensitivity, though.
i never had problems with Mepron before, but that's interesting about what you said sammy with back pain from it! Plus, this is a different situation for me than before.
I did get squeezed in to see the GI dr a week from tomorrow to talk to him about it. His PA had said that if it continued, ERCP would be the next step. But I want to talk to him about it and
about my options before I do that. What a slippery slope this all this---yikes! Sometimes they take out the GB during the ERCP surgery, I hear.
It makes me wonder if I should stop all the TBI meds for much longer. But the thing is, I'm so darned sick and nonfunctional! But then I am when on the meds, too. Really, really frustrating.
Randi, I think of you and many others who have had their gallbladders out, and they STILL have the problems, in fact more so! So I'm not hot for that, unless it's clear that there is no
choice. About 1/2 of the people I've read about are NOT better, and many are worse after having it out. And the other 1/2 are better.
The gallbladder is there for a reason! And I'm a person who metabolically needs a lot of fat (fast metabolism). So if I had trouble metabolizing fat after removal, I'd be in trouble. Sigh. I
just want to be better. After so many years of treatment to not be able to even sit up so much of the time is deeply discouraging. Thanks, guys.
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
Rumigirl, I'm sorry you're going through such a terrible experience.
I really think you need to find a doctor that will take the time to talk to you about this.
They should be able to help you with (taking � stopping �adding meds).
I wish you the best with your appointment next week, I hope it goes very well for you!
Hang in there, hopefully better days are coming.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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ukcarry
Frequent Contributor (1K+ posts)
Member # 18147
posted
I had dramatic extreme pain on 2 occasions and had an ERCP, then a few weeks later, had my gall bladder out. It emerged that the stone in the bile duct had eventually forced its way out, leaving ragged tube ends.
According to my gastro there was a good reason for not doing the 2 ops in one [but I've forgotten what that was!!].
I had no problem with either procedure, but hadn't read up on the pancreatitis risk.
Good luck with your appointment and hope you can get this sorted out soon,
posted
Mepron ..having to be taken with fats is a BIG problem if you are having pain in this area. Consider alternatives if possible.
Eating fats and taking Rocephin = trouble in your case.
Just my opinion from experience.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Lymetoo, I know. I've been off the rocephin since March 5th, but of course the damage to my gallbladder was already done by then---in spite of all my careful work to prevent it---Actigall, Liver-Gallbladder Flushes before starting, every month, then every week, coffee enemas, mini-liver flushes. Whoa, these meds are no joke. My efforts couldn't stand up to that.
Oh to be completely healthy and not in need of any of this stuff! I used to be someone who wouldn't go near meds---ha!
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