Story about Sphincter of Oddi Dysfunction .

Disease that changed my life forever

May 18, 2017

By: Samantha


I'll never forget Dec 2007, thought I was just having bad gas pains on my upper right side. Went and got Tums, the pain subsided but never went away. Saw a GI and then he referred me to a General Surgeon who thought it was my Gall Bladder. After going through all the test nothing confirmed or denied it was a 'bad' Gall Bladder. But we went ahead and it was removed. The surgeon did explain that he might be a disease, rare called SOD. After the surgery, the plain never went away, got worse and now I had dumping syndrome from not having a Gall Bladder!!! Awesome.

Here starts the journey. I went back to the first GI to work on the pains and the dumping syndrome. He put me on Cholestyramine Powder 3x a day before every meal to help bind the bile. I have taken that everyday since March 2008. Still having the upper right side pains that radiate around my ribs to my back....I had CT scans, MRI's, HIDA, MRCP's, Upper/Lower GI's, anything that dealt with the GI tract I had it. A few tests came back 'suspicious but nothing solid. After him consulting with dr's at Columbia Presbyterian in NYC, those 3 initials came up SOD. He explained it to me fully. What it was, how the disease worked (more or less), the 3 types (at that time) and then told me that I needed at ERCP but his group didn't do it. I burst into tears after being in pain now at this point for 10 months, losing weight, not eating. I was left to find a GI who performed ERCP's on SOD patients myself. I did at Valley Hospital in Ridgewood. So in late December 2008, I went into the hospital to have the ERCP to open the sphincter and place stents in the bile and pancreatic ducts. Simple right? Wrong, came home the same day as the surgery, high pressures in both ducts, off the chart pressures, stents were placed. Started to vomit about 6pm....pain increased until it got so bad I was rushed back at 2:30 am Christmas Eve. Admitted with severe pancreatitis into ICU for 6 days. I have never ever felt pain so intense or horrible like that in my life. 

I returned to the first GI and told him of the horrible ERCP experience. I continued to have the pains, weight loss, couldn't eat and he just couldn't or didn't want to help my SOD Type 3 which he diagnosed.

I reached out to a friend whose husband is a doctor and a medical center here in New Jersey. He got me into see the top GI guy there. And within 2 days I was in his office with all my records, scans telling him of the years I have suffered with SOD. This was now 2012. He booked me right away for an ERCP and manometry, which again was off the charts. Got stents in both ducts and got that familiar pain a few hours in the recovery room. Again, admitted with severe pancreatitis. Sucks!!!

He did confirm SOD Type 3 leaving the stents in for 4 months if I could handle it. They lasted 3. On top of this, I had a huge Liver Hemangioma that had to be removed ASAP. FML.......Just about half of my liver was removed with the hemangioma.

Back for another stent place in May 2013. These lasted 4 months. But the SOD never went 'away'. Pains, nausea....you all know the drill. It was time to go to NYC. I was referred to Columbia Presbyterian Pancreatic/Liver unit. I saw some of the most amazing doctors and staff there. They knew all about SOD and took it seriously. My doctor talked to me and my husband that May 2014 was the last set of stents for good, after that the dr's (all of them) meet as a team to figure out the best approach for my treatment of care. My stents came out in August 2014, no stents since. Not to say that I haven't had pains or flare up's because I have. Bad one's. I take Bentyl when I feel the pains. I just had a bad bout of pancreatitis in April 2017 and ended up in the ER for 8 hours on IV's and pain meds.

I know as an RN, I will never be 'cured' from this and that sucks. I have to watch everything I eat and drink. Even that at times doesn't help.......but this is the cards I was dealt in life and I must deal with it the best I can.

 

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