Hi! I am a 45 yr. old very active female who had maintained a healthy weight and never had any digestive issues before. In June of 2018 I experienced some sort of attack after waking up (not after eating) that included extreme pain in my abdomen (all over) and violent belching that lasted all that day. From that point on, I had no appetite, was unable to eat except for very small amounts and had what was later diagnosed as Supra Gastric Belching, which I learned how to control through deep breathing exercises. In addition, I would have periodic “attacks” that included severe and painful abdominal spasms that did not correlate with eating. I lost 20 lbs. in just a few months. I saw several respected GI Dr.’s, including one that specializes in hard to diagnose GI issues. I had every test done, but none showed any issues that explained by attacks. Scans did show that my gallbladder had a stone, but every Dr. said that the gallstone was not blocking anything and was not inflamed, so they did not think it was my issue. Having a history of gallbladder cancer in my family, I decided that I would get my gallbladder removed. The surgeon removed my gallbladder in Dec. of 2018 and the routine 1 hr. surgery took 4 hrs. The surgeon stated that the gallbladder was extremely inflamed and had extensive adhesions that took a lot of time to remove. After my gallbladder was removed I continued to have difficulty eating (not being able to eat much or very many different foods). I developed pains in the middle of my back when eating that I never had before my gallbladder removal, along with pain that felt like my entire abdomen was in a vice grip (with or without eating) that no medicines helped with. In addition, my energy level never returned after the surgery, and in fact, was getting worse. At the time of my gallbladder removal the surgeon also did a MRCP that showed everything all clear. I returned to the surgeon who did an ultrasound and those results were normal.
After my gallbladder removal in Dec. of 2018, I still get attacks, but they are different than before and happen way less often. Also, my energy level started to go down. I have had CT Scans, several scopes (upper & lower), lots of blood tests, Small Bowl Capsule Study, Endoscopic Ultrasounds, Lactulose Breath Test for SIBO, and CT-Angiography Abdomen, all of which have had no findings. I have tried several elimination diets. My pain does not depend on any particular food type or what I can and cannot eat is constantly changing.
Frustrated, in July of 2019, I went to see a new GI, who prescribed me Levsin (anti-spasmodic). I had already tried Bentyl (a different anti-spasmodic), but it did not help. However, for the past 6 months the Levsin has been helping me. It allowed me to eat a little bit more and more of a variety of foods, allowing me to get at least a bit more calories in daily than I had eaten in a year (although I still was very limited on what and how much I could eat). However, my fatigue continued to decrease, and from July of 2019 to early Jan. of 2020, I have become unable to do many things I was able to do before my gallbladder removal (driving at night b/c of fatigue, going to the gym or anything physically draining), which I am sure has a lot to do with my low intake of food. Also, I have not had a menstrual cycle in 2 months (also might be from low intake of food).
About a week ago, I had another attack, and since that time the Levsin is no longer helping me eat. Now, I have no appetite, and I make sure I eat, but when I do I can only eat very few bites without being in pain. I have started to lose weight again, which scares me. I have 2 children graduating from high school this year, so I was determined to not spend any more time and money on trying to “fix me” until I got them settled in at college in Aug., however, the recent change of events has caused me to start searching again because my quality of life if just unbearable.
I believe my problem could have to do with my biliary system, specifically, possibly Sphincter of Oddi Dysfunction. However, my GI states that my bile duct is not dilated on CT, so that cannot be my issue. However, my gallbladder did not look like is was causing any problems on any imaging/tests, so I do not have a lot of faith in that. My GI is stumped, and I am very concerned about my health.
I know this is a lot of information, but has anyone experience anything similar or have any idea what could be going on?