By Brooke Lee Keefer
Immediately after having my gallbladder removed in 1998, I developed sharp pain in my right side, under my ribs that radiated to my back and shoulder. My primary care and gastrointestinal (GI) doctors ordered an endoscopy, barium enema, and blood work. All came back normal. My GI doctor told me I must have Irritable Bowel Syndrome (IBS) and to drink Metamucil. I was also trialed on an antispasmodic medication but due to side effects had to discontinue. For the next 12 years I learned to live with the pain, accepting IBS as my diagnosis. The first year was the worst. I refused to take narcotic pain medication, which ended up being a good thing as opioid drugs are known to cause SOD spasms. Instead, I focused on deep breathing exercises, yoga, and a low-fat diet to ease the pain. Fortunately, as time went on, the pain lessened and became more of an annoyance than a debilitating condition. Yes, the pain was always there but I constantly learned ways to cope and live with it. I had a quality life.
Fast forward to September 2, 2011. Three months after delivering my third son by c-section, I became suddenly and severely ill with no appetite, dizziness, brain fog, fatigue, vomiting, and abdominal pain that spread to the area under my sternum. Mind you, during this pregnancy my constant right side pain magically disappeared and I didn’t think there was a connection with these new symptoms. A visit to the Emergency Room on Labor Day, September 5, 2011 proved to be uneventful. All of my blood work came back normal, as did my stool sample. My symptoms did not improve and an endoscopy a few weeks later showed mild gastritis and large amounts of bile collecting in my stomach, but nothing else.
On September 21, 2011, nine days before my 42nd birthday, I was hospitalized for dehydration, vomiting, and abdominal pain that I rated as a 9 on the 1 to 10 pain scale. I was admitted to the hospital for five days and given a healthy dose of iv fluids, narcotic, anti-anxiety, anti-nausea pain medication, and what I call a “munchy-inducing” anti-depressant. I had a CT scan, which was normal, as was my blood work. Prior to being discharged on five or six different medications, the GI doctor who performed the endoscopy told my dad he thought my symptoms were caused by post-partum depression. So, basically, the doctors were saying this was all in my head.
My family and I knew otherwise so I sought out a second opinion from another GI group. I thought the GI doctor would be compassionate as she was a woman. She performed a colonoscopy, after which she told me she didn't find anything, and seeing me cry, told me I probably needed antidepressants and that was my problem. I told her I was on antidepressants and that certainly was not the problem. I felt helpless and hopeless. Here was another doctor who thought my condition was all in my head.
This led me to a third opinion with a respected, local surgeon. He concluded that it was a strong possibility I had something called Sphincter of Oddi Dysfunction (SOD), but first wanted to rule out any vascular issues so off I was to get a CT Angiogram of my abdomen. The test came back normal. The surgeon told me verbally and in writing that he strongly suspected SOD. SOD is a disorder of digestive tract where the biliary and/or pancreatic sphincter(s)/valve(s) spasm in an abnormal fashion.
The gold standard diagnostic test for SOD is an Endoscopic Retrograde Cholangiopancreatography (ERCP) with Sphincter of Oddi Manometry. This type of ERCP is an endoscopic procedure that utilizes x-rays to gather images of the ducts (drainage routes) of the gallbladder, liver and pancreas and obtain pressures of the biliary, pancreatic and oddi sphincters. Since my original GI doctors were the only doctors who performed this type of ERCP in my hometown, the surgeon personally called the practice to (strongly) recommend I get this very specialized test. "Great," I thought, "I will get my diagnosis and get treatment." Not so fast.
I would have to wait another two months to get an appointment with the local GI doctor who specialized in pancreatic/biliary issues. He was in the same practice as the original GI doctor. That GI practice made me see my original GI doctor first, who I had lost all faith in after his remarks and resistance to truly believe in me. He prescribed me antispasmodics and other meds. None helped or the side effects were severe. I continued to have symptoms and was losing weight at a dangerous rate. Shortly after this visit I was hospitalized for four days right before Christmas for nausea, vomiting, dehydration, and pain. There, I had an upper GI series and more blood work, which were--you guessed it--normal. Somehow, through all of this, I was pushing myself to show up for work and be a mom to my infant and teenage son, while existing (I wouldn't call it living) with these disabling symptoms.
I saw the “new” GI doctor from the same practice in January 2012. He suspected something was going on with my pancreas from the way I described my abdominal pain. He tried me on prescription pancreatic enzymes, which, after a week, brought the searing pain under my sternum from a constant 7 out of 10 to a manageable 3 or 4 out of 10 (as long as I took them with every meal and snack). The enzyme copays were expensive and my husband and I were going broke from prescription, inpatient, procedure, and office visit copays. I was becoming skin and bones. If I hadn't been "crazy" by now as my doctors thought, I'd be crazy for not being crazy!
This doctor thought I had chronic pancreatitis (CP), so instead of doing the ERCP, he performed an endoscopic ultrasound (EUS) on February 14, 2012. I was furious as I wanted an ERCP with manometry to be tested for SOD, which would also test for CP, basically killing two birds with one stone. The EUS showed a healthy pancreas--another normal test. The doctor told me he wouldn't do an ERCP to test for SOD mainly because even if I had SOD, he didn't see much success in the treatments and that a national study was showing poor results of invasive treatments.
Fed up, I searched the Internet for other people like me who had similar SOD symptoms. I found a blog where several people recommended a physician located in Minneapolis, Minnesota. Though I lived in Albany, NY, I scheduled an appointment with him. Fortunately, my insurance covered the medical expenses, minus copays and travel. Unfortunately, the wait to see him was three months out. In April 2012, I saw my local GI doctor one last time. He entered the exam room and said, "Oh dear, you look anorexic." He told me to reduce the stress in my life and to eat more. Uh duh. If I could eat more I would. Again, he refused to perform the ERCP and pretty much put the blame on me. At this point I was down to 100 pounds from the 135 pounds I weighed before getting sick. I hadn't weighed 100 pounds since I was 14 years old! I felt weak, depressed, lost, and hopeless.
By May 2012 I was 95 pounds and was experiencing orthostatic hypotension, fainting spells and dizziness, muscle wasting, and loss of my cognitive abilities. I had to leave my career as I was now severely disabled. I looked like a victim of starvation and avoided mirrors and anyone with a camera. I could not gain or sustain weight on my own. On May 7, 2012, I flew with my mom to see the specialist in Minnesota. He was compassionate, listened to me, and agreed that I likely had SOD. He wanted to perform the ERCP test. However, I was so emaciated at this point that an ERCP could have killed me. Acute pancreatitis, a life-threatening condition, occurs in small percentages of people after this procedure. While I was in Minnesota, he had an associate perform another EUS and pancreatic functioning test. Both were fairly normal, except my bile duct was dilated and pancreatic duct had scarring. Finally, something showed up on a test! Most people pray nothing shows up on a medical test. I, on the other hand, was elated. The specialist recommended in writing that I get a G/J feeding tube to bulk me up so I could return to Minnesota in August to have the ERCP w/manometry performed.
Upon my return to New York, and after going through a very difficult time trying to convince anyone to put the feeding tube in, I had a G/J tube inserted on May 25, 2012. I began formula feeds enterally through the J tube. I was able to eat minimal amounts of food, about 700-800 calories. The tube became a whole other set of issues. The j tube part that was supposed to stay in the small intestine kept migrating into my duodenum and stomach, which defeated the purpose of the feeding tube as it was supposed to bypass the Sphincter of Oddi area. I was nauseous all of the time. I had to be hospitalized to have my tube replaced five times in two months. Also, none of the formulas were agreeing with me. I'd get severe nausea and headaches from it. It took two months to find the right one. Through my own investigation, I realized I had a serious issue with casein protein, hence the headaches. Also, I later discovered I had fructose intolerance/malabsorption, which was a huge problem as the formulas were high in sugar and fructose. Gaining weight became a full-time job.
By August I was able to get up to 109 pounds and flew back to Minnesota to have the ERCP. No surprise to anyone close to me, I was diagnosed with SOD. Beyond a shadow of a doubt, I had been suffering from SOD dating back to after my gallbladder removal. Basal pressures of the sphincters are supposed to be less than 35-40 mm/hg. Mine were over 175 mm/hg. Most of the people I've met with SOD have pressures between 60 and 100 mm/hg. After determining I had SOD, the specialist performed dual sphincterotomies (cutting) of my pancreatic and biliary sphincters to try and remedy my symptoms. Temporary stents were also placed in my bile and pancreatic ducts. Unfortunately, I was one of the unlucky few who ended up with acute pancreatitis after the procedure. I also developed an e-coli blood infection that went septic (since then it has been reported ERCP scopes are to blame for Superbug infections like this). I came very close to dying so far away from home and ended up in the ICU.
I found some relief for a good four to six weeks, but ended up inpatient yet again due to pain and nausea and to have my temporary stents removed. Immediately after, I returned to my original symptoms. By now I switched hospitals and was going to Albany Medical Center, which is a large teaching hospital. During my last stay, I met a surgeon who suggested a more permanent solution--a transduodenal sphincteroplasty, where the pancreatic and biliary sphincters are permanently sewed open to the duodenum. I was desperate at this point as I was back down to under a 100 pounds and not functioning well. It was major surgery, but I knew I had to go for it as I couldn’t imagine living life as such a critically ill person.
On October 3, 2012, I had open abdominal surgery for the sphincteroplasty. Similar to what happened in Minnesota, I developed a life-threatening enterobacter bacterial infection that went septic. I had a temperature hovering over a 106 degrees. I came very close to dying again. Only 50% of people survive sepsis. I survived it twice! Because of this and other complications, I spent the entire month of October in the hospital. I was blessed to have a very smart and compassionate surgeon. Also, the residents, my new local GI doctor, and nutritional MD, all treated me with respect and validated my condition rather than blaming and shaming me as my original doctors had.
The recovery from the sphincteroplasty was a long one and took a lot of patience before I started feeling better. Some days I thought I'd never be right. Digestive-wise I healed, not fully but enough to feel “well”. I gained all of my weight back and then some. That 24/7 nausea was reduced to just occasional bouts. The right side pain was minimal and pancreatic pain barely noticeable. Sewing those sphincters opened seemed to do the trick. Tragically I wasn’t well in other areas. I was given massive amounts of an antibiotic called Levaquin and steroids for the most recent sepsis incident. It caused a poisonous reaction throughout my entire body, damaging mitochondria, tendons, and my nervous system. A year later the FDA ordered all fluoroquinolone antibiotics like Levaquin and Cipro carry a black box warning stating they may cause permanent peripheral neuropathy. They already carried a warning of tendonitis and the debate is on to add a warning regarding mitochondrial damage. I got one problem “fixed” only to be left severely disabled by an antibiotic. The FDA calls it “fluoroquinolone associated disability”. I am still recovering from essentially being poisoned but am better.
This year I was diagnosed with chronic pancreatitis. I believe it coincided with coming off of a low dose benzodiazepine. It seems the withdrawal syndrome involved with these meds causes issues with parts of your body you are most vulnerable. I’ve met others like me and performed some testing of adding it back and withdrawing it again. Each time proved disastrous to my pancreas. I have calcifications and more scarring in my pancreas. For the most part, though, I am positive and not giving up. Thanks to caring doctors and treatments I have a quality of life. I watch what I eat, do yoga and meditation, see a therapist for the horrible PTSD I was blessed with by the medical profession, run the www.sodae.org website and Facebook page/group, and spend lots of time with my children and grandchildren. I don't recommend invasive procedures or surgeries unless less all natural and medication treatment options have been explored. For some, though, going the route I had to go is the only way to get a quality of life back. I am truly blessed to have made it through this ordeal. Now it is my turn to give back and hopefully help anyone struggling with SOD.