The author recounts the tortuous years trying to obtaining a name for her mysterious condition. In time, through her own sheer will, determination, and thorough research, Alexa figured out she had Sphincter of Oddi Dysfunction. Her doctors agreed and with a few lifestyle changes and medications she was able to manage her symptoms and lead a happy healthy life as a wife and mom.
By Alexa Axelrod
Unfortunately, like so many others with this condition my story is long, frustrating, and emotionally and physically exhausting. At 25 years old, in May of 2009, I went to my doctor for minimal but nagging pain in my lower right rib area. I thought it could be a gallbladder issue. An ultrasound confirmed I had a mobile gallstone that was rather large. After seeing the vascular surgeon briefly, he determined my gallbladder should be removed surgically. I asked if there were any other options and he said, “No.” My surgery was in early June of 2009 and I didn't think twice about it. It went flawlessly and the recovery was quick and fairly painless. The next month or so went very smoothly, but everything would soon change.
In late July of 2009 I went to bed feeling ill. I had eaten a burrito bowl for dinner and thought maybe I had a touch of food poisoning. The nausea quickly began to turn into a strange pain in my upper right quadrant of my abdomen. This feeling quickly became something that I have never experienced before. My pain was reaching intolerable levels. I ran into my parents’ room and buckled over at the foot of their bed. I told them something was severely wrong and to meet me downstairs so I could get a drink of water. In my head, I was thinking appendicitis. By the time I got downstairs I was experiencing pain far worse than childbirth. I felt like I couldn't breathe and was genuinely in fear of my life. The only action that would take the pain away momentarily was vomiting, but it would come right back. My mother called 911. The ambulance came and tried to administer the IV, but my blood pressure was so low, they couldn't find the vein easily. Amazing because I have very juicy veins normally. After loading me in the ambulance they started me on morphine. I remember pulling away from my house and thinking I may never see my sweet 2-year-old daughter again. It was that horrendous.
Unfortunately, as I now know so well now, the morphine made my pain significantly worse. The ER staff treated me horribly as they tried to figure out what was wrong. They did numerous tests and scans and found that I was constipated and that my pancreatic enzymes were not normal. I told them I felt this had something to do with not having my gallbladder anymore, but my claims went ignored. I spent 6 hours there, most of which in extreme pain. The doctor diagnosed me with "Colonic Spasms" due to constipation and sent me on my way.
After returning home the next day I made an appointment with a gastroenterologist. Over the course of a month I had a colonoscopy and an endoscopy. An ERCP was planned but since they didn't see any stones near the bile duct on my scans they called it off. In the end, I had nothing but a diagnosis for Irritable Bowel Syndrome and a script for chlordiazepoxide, a benzodiazepine, to take as needed. I remember feeling as though my doctors were stumped, which concerned me. They were supposed to have the answers to my symptoms. Fortunately, about half of the time, if my "spasms" were coming on, the medication would stop them. Unfortunately, in the remaining cases, I would spend the attacks either in the ER or at home, on all fours, crying out in pain, and vomiting every 5-10 minutes for hours due to the accumulation of bile in my stomach.
Over the course of the next year I developed severe anxiety. I was afraid to do anything as I didn't want to feel the pain. I wouldn't drink anything alcoholic or eat anything remotely fattening, I was terrified to go on any trips or outings, and it kept me from enjoying my life. The lingering, "What is wrong with me?" was always in the back of my head. During the summer of 2010 I had an unrelated surgical procedure that was absolutely the defining moment that would help me in my quest for a diagnosis. Because of the nature of the procedure I was prescribed Percocet and then Norco. I remained on opiates for the next year, although I only needed a half to a whole pill a day.
This brings me to the next part of the story - The anxiety turned into hypochondria because of the unresolved medical ailment that I knew I had. I went to the doctor constantly and my performance at work suffered severely, not to mention my parenting and my relationship with my now spouse. They tried to put me on Prozac, lorazapam and a million other anti-depressants and anti-anxiety meds. All I wanted was a diagnosis. My friends started to call me Dr. Google because I researched non-stop. Being on opiates, I realized, that during that year period I had significantly more spasmodic attacks than the year preceding. Suddenly the lightbulb went off. In early 2011, I did an internet search for "Opiate Induced Abdominal Pain and Vomiting" and low and behold SOD popped up over and over again! I read and I read and I read until I was blue in the face. I knew I had found my answer. Sadly, as we all know finding a local doctor well-versed in this condition is challenging. I had an HMO at the time and even though it was a huge organization, no one was able to help me. Fortunately, my anxiety got better immediately following my self-diagnosis. The hypochondria went away with it. I knew I had cracked the code and was somewhat content with that for the time-being.
From 2011 to December of 2013 I went to the ER with my SOD attacks at least six times (I had many other attacks that I just suffered through at home). I told the ER staff that I had SOD because they would also insist on giving me morphine or the like, which would only make the pain ten times worse. I would beg for hydration and anti-spasmodics or anti-inflammatories and it would usually work. Most of the time the ER doctor would have to search his journals on SOD because they knew nothing about it.
FINALLY, in December of 2013, after having a recent severe attack and suffering for over 4 years and being on the brink of mental collapse at times, I reached out to a dear friend who is a renowned gastrointestinal surgeon. My husband and I were trying to get pregnant and I knew I needed to resolved this once and for all. I told him what I knew I had and that I needed him to help me find a doctor to confirm. He said to me, "Tell me why you think you have Sphincter of Oddi Dysfunction." I told him everything I had been experienced and how it correlated with what I had learned through research. He said, "Well, I think you have this, too." Words I so desperately needed to hear! He referred me to his friend and colleague and within a few weeks I had an appointment. I brought him all of my paperwork and test results over for the past four years. He easily and confidently diagnosed me with SOD III. Aside from my initial test results in 2009 that presented elevated pancreatic enzymes, by body has never shown evidence of SOD via bloodwork or scans. We chose not to perform a sphincterotomy as I do not suffer daily and he didn't want to upset my pancreas or make matters worse. My Doctor then prescribed me with sublingual hyosciamine. Although it does have some side effects, it has proven to be the most effective solution I have found for my body and works most of the time.
I am happy to report that the last time I was in the ER was December of 2013! I got pregnant with twin boys in January of 2014 and had a wonderful and SOD-free pregnancy (it must be that relaxin hormone - I wish they could bottle it). The attacks did not resume until January of 2015. In addition to the medication, I was able to learn some new techniques to keep them from becoming horrific. For example, I have found that a big glass of cold milk when I feel them starting can stop them. I have also discovered that sleeping on my back is the best way to keep them at bay as I am most prone to them at night. Lying on my sides or putting my kids directly over my upper abdomen can bring them on, so I also avoid that. I also cannot wear any sort of underwire bra or clothes that fit too tight under my chest. I don't drink any alcohol other than an occasional beer and I avoid most acidic foods like red sauce and pizza. I did have a severe attack in November of 2015 (thanks to the stomach flu) and one in March of 2016, but I painstakingly got through them at home. I have found that the more quickly I am able to start vomiting, the sooner the pain will go away. Also, I have seen a decrease in pain since I started exercising and meditating. When in a spasm, I meditate through the pain and the vomiting and try to go to another place. It sounds silly, but it helps.
In closing, as many of you know, there is no perfect answer to our pain, but I pray that everyone can evolve to develop a profound understanding for their bodies and learn what works and what doesn't, like I have and still am. It's truly an evolution, albeit a painful and frustrating one. There is hope and there can be solutions. This is an extremely difficult and potentially debilitating illness and all that we can do is continue to push for awareness and for bigger answers to a more concrete solution.