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1030353 tn?1262485688

Sphincter of Oddi

I have been reading thru all the comments on Sphincter of Oddi and it is frustrating to see so many people having the same symtoms for years I saw as far back as 1999 and yet there is still so little help out there for people with this problem.  I know that there is the Episod study going on right now in several locations across the country and I have contacted them but I am afraid to participate after reading so many people say that the Sphincteromy or stent only helped short term and only got worse.  I cannot imagine my symtoms getting worse especially since doctors are already unable to help me. If I end up with more pain then I will be in even more trouble than I am already in.  I feel so trapped, I just want to live my life without pain. I truely value life so much more now that I have been living in in constant pain for 7 months and counting.  I wish there was help out there. If anyone has any suggestions for me as far as a diet, medications etc I would greatly appreciate it. I am currrently on Librax but all it helps with is slowing the Bowel so I dont no longer have diarrhea and it helps me to sleep. I lost 25 pounds the first 5 months of being sick but gained it back (which I know is not helping me get any better) because of this medication I am on makes me feel hungry all the time.  Thanks for listening and any advise it greatly appreciated!!
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Avatar universal
Hi - I too live in Ohio and have had 3 acute attacks of Pancreatitis (hospitalized each time) My docs here have no idea why I have these.  I had my gallbladder out March of 2010 and the attacks were June Aug and Oct.  My doc's said if I have one more hospitalization they will refer me to Dr. Sherman at Indiana. I did call there, and they recommended the Levbid.  My doc did not want to add the antidepressant to it (don't know why) so I have been on Levbid .372 2 a day for a month.  Did this help you?  How long have you been on it?  I am praying it will work as I hear too many bad stories regarding ERCP and cutting the duct.  I appreciate hearing from you.  In between attacks I am fine, sometimes just a slight pressure, but I will take the cotton mouth and Levbid over attacks, anytime!  Any advise you can share will be most appreciated.  Thanks  Dianne in Ohio
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Avatar universal
I posted prematurely...that's what I get for not having my coffee before I got on the computer.

You should ask your doc about trying Levbid (.375 dose) and Elavil.  Levbid is an antispasmodic which is supposed to work on smooth muscles, and the SO is a smooth one.  Elavil is an old school antidepressant which is really only used anymore to help manage pain.  It numbs your nerve endings all over your body which basically increases your body's pain tolerance level.  I should warn you that there's a 50/50 chance of them working, and there are some side effects but in my opinion they were very tolerable like dry mouth and sleepiness, but they did work on me fairly well.  I even slept through the night on them!!!

This combination is a very common "sod cocktail" in the sod world.  I have met many people online in different groups who have also been on these two meds.  This was the first line of defense that I tried before anything else, and luckily, I did have success with them.

Good luck!!!  Keep us posted.

PS Levbid can be prescribed in two different dosages...I had much more luck with the 12 hour timed release which is the .375 dose rather than the "as needed" dose.
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Avatar universal
I could not agree with you more on all accounts that you mention.  Unfortunately, if there's not BIG funding for research for things like this, we just get no where fast.  
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