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Sphincter of Oddi Dysfunction
sod
I've been dx with SOD & Pancreatitus for almost 3 yrs now.  I have been in the hospital 4 times over the last 2 1/2 yrs. 1st time for MAGA PAIN and stayed hospitalized over a month & lost 40 lbs. Could not eat or keep the pain away.  I had an ERCP w stents, on TPN 6 mos, relieved the pain to the point I had a life then the crippleing pain came back again. Pain lasted for over 2 wks could not eat or drink again and was in the hospital for over a month, ERCP again & stents.  Pain resolved to bareable for 8 months and then again the pain came back,could not eat, MAGA PAIN lost 45 lbs again and hospitalized still another time for over a month, ERCP and stents.  I still have pain but I can function with meds PRN.  I try to stay off the pain killers.  I always have chronic pancreatitus, so pain meds, watching what I eat and keeping the bowel cleaned are a way of life that I have adjusted to.  Don't like it but I try to stay positive.  MY QUESTION: Why can't someone come up with a stent that can stay in your pancreas so the Sphincter can stay functional.  Each time the stents are placed they have cut to get them in and each time I get more scar tissue which causes more pain and spasms.  Bile backs up in the pancreas, food can't digest and then the vicious cycle starts all over again.  Pain killers keep you loopie and bound up, which makes the pain worse.  Someone help us who have this problem.  I have a friend with the same problem.  This person is on TPN for over 9 mos., is getting a central line in for pain meds and weights 98 lbs. Thoughts and suggestions?????
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Have you discussed using botox with your doc? It's used in some cases and may give you a respite.
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