My Long SOD Journey: Please, Somebody Do Something! (Part 2)

My Long SOD Journey: Please, Somebody Do Something!

My family and I knew Dr. B was wrong–that my digestive woes weren’t from post-partum depression and/or viral gastroenteritis. My problem, whatever it was, went far beyond post-partum depression or a bad stomach bug. Like I mentioned before, was I depressed? Damn straight I was depressed. I woke up every morning feeling like I had the worst hangover even though I hadn’t drank a drop of alcohol in many years. It felt like my body was weak in every crevice and my mind was foggy and fatigued. No amount of coffee could fully wake me up. Then there was the abdominal pain. I tolerated that sharp pain in my right side for over 12 years, but now had a burning, constant pain under my sternum in addition to that pain. Every day, all day, I had nausea, pain, and fatigue, that never fully subsided. Oh yeah, and, yes, there was the depression too. The woman who used to be described as “stoic” could now cry at a drop of a dime. The crying was awful and ugly too. The tears swelled my face to the point it took me over a half hour to look “normal” again after a crying session. I was so sad about being ill and not having a diagnosis.

Seven weeks after falling ill, I looked online for another GI doctor for a second opinion. I found a young, female doctor affiliated with a different hospital. I figured if the doctor was female, she’d be more compassionate and open-minded. In addition, I didn’t want my other doctors to know I was seeking a second opinion. I felt like I was going on a job interview, not wanting my current employer to know about it as they may hold it against me. 

I was quickly disappointed as I didn’t see the female doctor, let’s call her Dr. C, for the first appointment, and ended up with a physician’s assistant. He was very nice and compassionate, but didn’t have any more answers than my previous doctors. He ordered a colonoscopy to see if that would show anything, but I would have to wait until the beginning of November for  the test. I was very ill and growing very impatient. My mother suggested I see a “very smart” surgeon she knew for a third opinion while I waited for my colonoscopy date.

I saw the surgeon, I’ll call Dr. D. Get the theme here? ABCD…. He by far showed the most concern. He wasn’t sure what was going on with me after the first visit, but initially suspected I could have celiac disease, an allergy/immune-reaction to gluten, and/or vascular issues with the arteries or veins of my digestive system. Dr. D ordered a blood test for celiac and a special CAT scan angiogram of my abdomen.

The day for my much anticipated colonoscopy was here. As many of you know, the worst part of a colonoscopy is preparing for it.  Diarrhea cramps are no fun, especially if they are self-induced. I just couldn’t comprehend how much crap my body excreted. After all, I was only able to eat about 800-900 calories a day. My mom went with me because they drug you up to the point you are too dopey to drive home after the procedure. My poor mom was the designated driver for all my procedures. Poor mom.

I was very emotional that day, even more so than most days. I really wanted an answer. I wanted somebody to find something and do somtheing about what they found! I cried as I checked in, cried to the nurse as she set me up with an IV, and cried to Dr. C when I finally met her prior to the start of the procedure. I told her what had been going on. Instead of the compassionate female I had hoped for, she shot back at me with, “Maybe you need to be on antidepressants.” I was in shock and wanted to say, “Well if you read my chart, you’d see I am already on anti-depressants! And by the way, that really isn’t the point.” Instead, I suffered in silence, hoping she’d find something during the colonoscopy so I could say, “I told you so.” I was very groggy after the procedure, more so than the endoscopy I had in September. All I remember is Dr. C telling me she didn’t find anything except a few hemmorhoids (sorry again for TMI), that I was perfectly healthy and to follow up with her in her office in a month or so. “Are you kidding me?” I thought. “I don’t have a month. You need to figure this out now!”  I started crying, at which point she told me again that I needed to look into antidepressants. I mumbled to her that I was on antidepressants and that certainly was not the problem.

Fortunately, I had an appointment that week with Dr. D the smart surgeon.  He told me my bloodwork showed I had the genetic marker for celiac disease. Though this didn’t mean I had active celiac disease, it could mimic some of the symptoms I was experiencing. From that day forward I removed all gluten from my diet. I must say after a few weeks of gluten elimination, I had a surge of energy, but my symptoms never waivered. The angiogram scan came back normal (of course). It was at this appointment that Dr. D told me he suspected I had something called Sphincter of Oddi Dysfunction (SOD), a rare medical condition that results from the inability of  the biliary and/or pancreatic sphincter to contract and relax in a  normal fashion. This may cause obstruction of bile flow resulting in  biliary pain and obstruction to the flow of pancreatic juice, which can  lead to pancreatitis.

I already knew all about SOD as I became an Internet doctor as soon as I fell ill. I literally should have an honorary GI degree for all the research I did. I searched the Internet everyday for an answer to my problem. It became an obsession–trying to find my diagnosis. It wasn’t just Dr. D and me who thought I had SOD. Two other people I knew suspected I had SOD. A pharmacist friend told me he was convinced I had SOD. Also, a former co-worker saw an episode of Mystery Diagnosis and told me there was a  woman with the same symptoms as me who was diagnosed with SOD. Of course, at this point, I had diagnosed myself with every GI condition possible, but this SOD was the one I kept coming back to, primarily because the primary symptom was pain in the right side.

The gold standard diagnostic test for SOD is something called an Endoscopic retrograde cholangiopancreatography (ERCP) with Sphincter of Oddi Manometry, which is an endoscopic procedure used to  take x-ray pictures of the ducts  (drainage routes) of the gallbladder,  liver and pancreas and obtain pressures of the biliary and pancreatic sphincters. Since my original GI group was the only group who performed this test in our area, Dr. D called the practice to (strongly) recommend I get this very specialized test. “Great,” I thought, “I will get my diagnosis and get treatment.”

ERRR (sound of brakes). Not so fast.

 It took another month to get an appointment with the GI doctor, and it wasn’t even with a doctor who actually performed the test. It was with Dr. A, one of the doctors who was convinced I was crazy and had a stomach bug. I was so angry with the practice, but they told me I had to see him before I could see an actual doctor who performed the SOD test. So much red tape, just to get a diagnosis!

During my GI visit with Dr. A in December, my doctor emphatically told me I didn’t need an ERCP (even documented it in my chart) and that my condition, whatever it was, would likely go away on its own. I believe to appease me, he ordered more bloodwork which was normal again, and an abdominal ultrasound, which was normal as well. Now that I look back at his office notes, he wrote in all of them that I was improving, even at that office visit. I should have been more on top of my medical records back then. Although I have copies now, I would have addressed the fact I certainly was not getting better. I was getting worse. In fact, I was deteriorating!

I was so upset when Dr. A was emphatic about me not getting the SOD test and his take was, “whatever it was, it will go away in time.”  I still had the same symptoms, but the pain under my sternum was getting worse. I was also starting to have cyclical vomiting spells and crying all the time from feeling so sick and tired and sick and tired of being sick and tired. I knew I wasn’t crazy and although I wanted to give up time and again, I knew I had to keep searching for the reason why I was so sick. I continued to have symptoms and was losing weight at a dangerous rate. I think I was down to 115 at this point.

Luckily, smart surgeon Dr. D advocated for me to see a different GI doctor from that practice–one who actually performed the SOD ERCP test–Dr. E. Again, I had to wait about a month to see Dr. E. In the meantime, I was hospitalized for four days right before Christmas for nausea, vomiting, dehydration, and pain. While in the hospital, I had an upper GI series and more bloodwork, which was–you guessed it–normal. Our family celebrated Christmas Eve at my house and all I could do was daydream about when the day would end. I just wanted to go to bed.

I met with Dr. E in January. He seemed as though he wanted to get to the bottom of my problem and suspected something was going on with my pancreas the way I described my under the sternum abdominal pain. He tried me out 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 out of 10 (as long as I took them with every meal and snack). So, there was definitely something going on with my pancreas. Unfortunately my prescription coverage reached its maximum and they were $1,000 a month. Luckily the doctor helped me with samples, but I had to buy them at times when there weren’t any samples. My husband and I were going broke from prescriptions and copays. The doctor thought I may have chronic pancreatitis. Instead of the ERCP, he performed an endoscopic ultrasound (EUS) on February 14, 2012, though I wanted an ERCP and to be tested for SOD. The EUS showed a healthy pancreas–another normal test.

At this point I am completely fed up and starting to look like a skeleton. I am trying to force food down, but when I do, I either get sick, or I have such terrible brain fog and fatigue that I can’t function and end up wanting to sleep all day. I figure my solution is to find others like me who may have SOD, on the Internet. I found a blog where several women recommended Dr. F, a physician located in Minneapolis, Minnesota. Though I live in upstate New York, I scheduled an appointment with him. Fortunately, my insurance covered the medical expenses and I was able to get a consultation and potential ERCP appointment with him the first week of May. I just had to come up with the copays and travel expenses for my mother and me. 

I saw local Dr. E one last time in April 2012. He greeted me with, “Oh dear, you look anorexic.” Well, I never had an eating disorder in my life before, and he made me feel so much shame and guilt–like I had control over my condition. He told me to reduce the stress in my life and to eat more. Uh duh. If I could eat more I would. He refused to perform an ERCP to test for SOD. He said I very well could have SOD, but he said they are finding that most of the treatments only work half of the time and the ERCP could bring about acute pancreatitis, which is risky because of my weight. I was fuming inside. I wouldn’t be at this risky weight, if he had just done the ERCP like I asked and Dr. D suggested two or three months prior. I was enraged. Even a 50% success rate is better than where I was at in my life. I was seriously in fear everyday that I was going to slowly die. At this point I was down to 105 pounds from 135 pounds on September 2, 2011. I hadn’t been 105 pounds since I was 14! He told me to follow up with him in June. I couldn’t believe this. I felt so betrayed. I have trust and faith in my doctors to help me. I don’t expect them to be miracle workers, but to just do whatever is possible to figure out what’s going on with me and try to help me recover.  

By the end of April, I was 95 pounds (a loss of 40 pounds since September 2, 2011), and was experiencing orthostatic hypotension (dangerously low blood pressure), fainting spells and dizziness, muscle wasting, and loss of my cognitive abilities. My primary care physician was very concerned for my well-beling at this point. I could not gain or sustain weight on my own. I had to stop working and the dizziness made it difficult to drive and care for my baby, who was about to turn one.  

On May 6, 2012, I flew with my mom to see Dr. F in Minnesota. He was a nationally recognized expert in SOD. After reviewing my case and do an exam, he strongly suspected SOD. He said he would like to perform the ERCP test, but considering how badly emaciated I was, an ERCP could kill me if I came down with acute pancreatitis. Acute pancreatitis, a life-threatening condition, occurs in small percentages of people, after this procedure. While I was in Minnesota, he did have an associate doctor perform another EUS and pancreatic functioning test. Both were fairly normal, except my bile duct was dilated and pancreatic duct had possible scarring (finally I had something show up on a test!). The doctor recommended in writing that I get a G/J feeding tube to bulk me up so I could have the ERCP done in August.

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My Long SOD Journey: The Beginning (Part 1)

My Long SOD Journey: The Beginning

By Brooke Lee Keefer

I went undiagnosed with Sphincter of Oddi Dysfunction (SOD) for 14 years. This is the first excerpt to a series of blogs re-telling my story of becoming ill, trying to obtain a diagnosis, and seeking and surving treatment.

Immediately after having my gallbladder out in 1998, I developed severe pain in my right side, under my ribs that radiated to my back and shoulder. My primary care and GI doctors ordered an endoscopy, barium enema, and blood tests. All came back normal. The barium enema was horrible–like having a balloon blown up your rectum as big as possible, filled with thick cream, and then popped so the thick cream goes all up in your intestines causing painful diarrhea-type cramps. It was the worst GI procedure I ever had done. I really hope they don’t make people go through those anymore.

The right side pain was always there, but worse in intensity after I ate or if I was stressed. I cried and begged my doctors to provide an answer. Newly in recovery from alcohol and addiction issues, I threw my share of temper tantrums and rants about the pain at 12 step meetings. I found a GI doctor in the phone book–the yellow pages of all places. I guess I liked his name and honestly can’t remember it to this day. I think his name started with a “Br” like mine. Dr. Br did a thorough office exam of me and, without hesitation, told me I had irritable bowel syndrome (IBS) and to drink Metamucil and eat more fiber. He also convinced me to enroll in a clinical trial for IBS. I hated not knowing if I was a placebo or an actual recipient of a medicine that could help me, so I quit the study after three months.

For the next 12 years I learned to live with the pain. The first year was the worst. I survived without narcotic pain medication because of my commitment to recovery. Thinking back, the pain was definitely intense enough to warrant narcotics (at times an 8 out of 10 on the 1-10 pain scale). I was miserable. But, being a recovering addict, my mind doesn’t know the difference between taking a narcotic drug for pain or for pleasure. So, lucky me had to settle for ibuprofen, aceteminophen, aspirin, and naproxen sodium. None of them actually worked. Therefore, instead of narcotics, I focused on deep breathing, yoga, and a low-fat diet to ease the pain. Over time, the pain lessened in serverity and became more of an annoyance than a debilitating condition. I essentially came to accept the knife in my side, but definitely kicked and screamed all the way.

Fast forward to September 2, 2011, four months after I delivered my third son at the age of 41 by c-section. On this day, I became suddenly and severely ill. And, I mean suddenly and severely. It came out of nowhere–complete left field stuff.  I was dry heaving or vomiting at every turn. The need to vomit was uncontrollable. I felt it in my gut, in my head, and even in my back. I also had a new abdominal pain different from the knife in my right side. It was a constant, searing, deep pain under my sternum. I also had severe dizziness and some diarrhea (sorry for the TMI). This wave of intense illness came on while I was camping with my husband, 14 year old and four month old sons, and 15-year-old stepson. I chalked it up as a bad reaction to the strong antibiotic I was on for mastitis, a very painful breast infection caused by breast feeding. I also thought I quite possibly had the worst case of food or water poisoning or the stomach flu anyone had ever experienced! 

After one night of camping, I decided to drive home with the baby. We were about an hour’s drive from home and I wanted to get home to rest in peace–and be closer to a hospital. I had a handy make-shift barf bag at my side for the ride home and used it every 5 miles or so. I was very dizzy and shouldn’t have been driving. I wasn’t one to run to the emergency room, but I knew if I didn’t get better soon I’d have to get to the ER. I felt a little better once I got home. I slept everytime the baby slept, about 15 hours that day. On Labor Day, September 5, my husband, son, and stepson returned home from the camping trip. I heard them come in the house as I was sitting on the toilet crying, begging God not to let me die. I honestly had never felt so sick in my life. I could barely move. I felt like I was dying of something. I knew there was something very wrong with me, not just a bug or bad reaction to an antibiotic. This was full-on weird.

My husband convinced me to go to the ER that day. My most vivid memory of that day was the nurse hooking me up to an IV machine and administering anti-nausea and narcotic pain medications. For the first time, I felt relief, wonderful, blissful relief. The ER visit, though, proved to be uneventful. They drew blood, which came back normal. They also took a stool sample, but results would take a few days to develop. The ER initially diagnosed me with clostridium difficile bacterium (aka “c diff”, a highly contagious virus usually triggered by antibiotics, leading to mucous- and blood-drenched diarrhea) and viral gastroenteritis. Prior to my discharge, the doctor told me to stop taking the antibiotic I was on for the mastitis in case I had the c diff. I was prescribed Zofran, a rather effective anti-nausea medication with few side effects. They even give it to pregnant women for morning sickness, so it can’t be that bad. I decided to forego pain medication.

I followed up with my primary care physician, who informed me that my stool test came back negative for c diff, parasites, and viruses. I was actually disappointed. I just wanted a diagnosis, a medication to cure it, and be on my way. I needed to get back to work and feeling better. He referred me to a local GI group and had the front desk set up an appointment for me to be seen as soon as possible. I met with a GI doctor a week later. By now, my symptoms had not improved at all. Even with the anti-nausea medicine, I couldn’t eat or keep anything down. The GI doctor, who I will refer to as Dr. A, seemed somewhat compassionate, but my intuition was telling me he didn’t have a clue what could be wrong with me, and may even think it’s all in my head. I couldn’t stop crying from the pain, weakness, and nausea. The doctor ordered an endoscopy. I prayed they’d find something in the endoscopy–and they did! The doctor who performed the endoscopy (we’ll call him Dr. B) said the rapid test for h pylori infection came back positive. He warned me that it often happens and the definitive diagnosis would be in the pathology report. I also had mild gastritis, probably from throwing up so much. Dr. B prescribed a powerful combination of antibiotics and sent me on my way.

I took the antibiotics for a few days and–bam! I was vomiting worse than ever. I felt faint and dehydrated. So, off to the ER again. On September 21, 2011, nine days before my 42nd birthday, the ER doctor admitted me as an inpatient for observation, IV fluids, medications, and nutrition.  I stayed in the hospital for five days and was given a healthy dose of iv fluids, narcotic pain, anti-nausea and what I call munchy-inducing medications. I had a CAT scan, which was normal, as was more bloodwork. The pathology came back on the h pylori and it was negative. I was distraught at this point. All of my tests were normal yet I felt like I was dying. Prior to being discharged on five or six different medications, Dr. B told my dad he thought my symptoms were caused by post-partum depression. My intuition had been right. They thought it was all in my head, or they had no clue in the world what could be wrong with me. 

Was I depressed? Damn straight I was depressed. I was beyond depressed. I was hopeless. I cried all the time. But then again, anyone would be depressed and cry all the time if, for an entire month with no explanation, they had chronic vomiting, no appetite, experienced 8 out of 10 pain, couldn’t get out of bed due to over-exhaustion, and had a river running out of their butt. Worst of all, I had to give up breast feeding as I had nothing nutritionally to offer and it took too much out of me. I wished the doctors who thought it was all in my head could have spent a day–just one day–in my shoes.

By the second week of October, I forced myself to return to work. I was in a management position, so I spent much of my time sitting at my computer in an office. Part of my job required extensive travel. I could barely walk from my house to the car, from the car to my office, let alone deal with airports, taxis, hotels, and meetings. I worried about losing my job, my income. But, the opposite happened. My employers were very compassionate and concerned for my well-being. I forced myself every day to get to work and through the day. By now I relied on two different anti-nausea meds and a benzodiazapene to survive. I relented to the psychiatrist during my hospital stay who insisted I need to take a low dose benzo to deal with the anxiety and that it would help calm the nausea. I fought it due to the recovery thing, but finally relented and am still grateful to this day that I did. If I hadn’t had the combination of the low dose benzo with the Zofran, I would have never been able to work or take care of my baby. I had to give up the munchy-inducing medicine as it made me eat foods that made me more sick and gave me horrible nightmares. The diarrhea went away by now and the meds helped, but I still had chronic nausea, fatigue, abdominal pain, no appetite, and brain fog. The pain was all-encompassing and I was starting to lose weight, not that I was trying. That saying, “Be careful what you wish for,” is so true. After I had my baby boy, I prayed that I’d lose the baby fat. It wasn’t much. I usually was 127-130 pounds and before I got sick was 135-140 pounds. Let’s just say I will never pray for anything specific again!