My Story
In order to be of the most help to people experiencing symptoms similar to mine, I will start from the beginning and work my way to my current condition. I should start with telling you that I was 19 years old when the symptoms started, not overweight or diabetic and with no other health issues.
January 2011
I started experiencing bothersome abdominal pain that got worse after I ate. The pain was in the upper right quadrant of my abdomen and felt like someone was sticking a knife through my stomach. While the pain was annoying and uncomfortable, the accompanying nausea was much worse. It started after I would eat, and would continue for a couple of hours.
After experiencing the pain and nausea for a couple weeks, I decided to go see a doctor. After checking to see if I was otherwise healthy, (heart, lungs, etc), my doctor decided that my symptoms were consistent with a dysfunctional gallbladder. She ordered an ultrasound of my gallbladder to be completed the next day. The ultrasound of my gallbladder came back clear- there were no visible stones or deformations. The next step was a HIDA scan of my gallbladder. They told me this test was much more accurate and able to tell if a gallbladder is simply not functioning.
The HIDA scan was a very simple procedure. It consisted of me lying on a table with a large, xray type machine taking images of my gallbladder. It lasted a couple of hours- first they had to wait and see the gallbladder on the machine and then had to inject me with a medication through an IV in order to get my gallbladder to contract. When the injected the medication I immediately began experiencing my same symptoms, pain and intense nausea. I told them I wasn't feeling well but they wanted to continue the test.
February 2011
The HIDA scan took about a week to get the results- mostly to get the doctor to read the results and get back to us. One morning my doctor called and told us that we should go straight to the ER and that a surgeon was waiting to take out my gallbladder. When we got to the hospital and finally got to see the surgeon- after waiting in the ER for 2 hours- he explained the results of my HIDA scan. He said that my gallbladder was functioning at about 30% and needed to be removed.
The surgery was done laparoscopically and I only had to spend one night in the hospital for observation. The pain afterwards was pretty intense- the worst from the gas they injected when they took out my gallbladder. The nurses asked me before going home if I was nauseas, and I was able to say that I wasn't! I was thrilled... I thought that after over a month of not feeling well I was finally cured-- if only I had known what was coming!
About 3 days after I got home from hospital I began feeling nauseas again. The pain wasn't there- but thats because I was on the narcotics from the surgery. It took about a week of recovery until I was able to return to school after my gallbladder removal.
2 weeks after the surgery I was having a lot of pain and extreme nausea, and could barely eat anything without getting sick. I made an appointment to see my surgeon to make sure there weren't any complications. He gave me the all clear and recommended I return to my general practitioner to see what was wrong. He told me my gallbladder wasn't really the problem and I probably didn't need to get it out- Oh Good!
I returned to my general practitioner to see what the next step would be. She ordered another ultrasound on my upper abdomen to make sure there weren't any loose stones or any other problems. The ultrasound came back clear... again. She then decided that whatever was going on was beyond her expertise and that I needed to see a G.I doctor- who specializes in stomach issues. Unfortunately, the next available appointment with a G.I doctor wasn't until May... so I just had to wait it out.
In the mean time, I had been taking dissolvable Zofran tablets for my nausea. I started with 4mg every 6 hours and eventually moved to 8mg every 6 hours or even closer together. I had no idea that Zofran would soon become my drug of choice.
April 2011
Since making my appointment with my G.I doctor I had just been waiting... still making it to school but feeling very misserable. I had good days and bad days- mostly bad days. I was taking Zofran around the clock for my extreme nausea. It no longer occurred after I ate- it was constant. The pain was very uncomfortable as well... sharp, stabbing right under my ribcage on my right side. The pain got worse after eating and lasted about 2 hours.
I figured out I could be somewhat functional if I didn't eat. I could clean my house and go shopping without feeling too bad... but I couldn't eat... not even a little. One day the pain and nausea were so bad that I couldn't function. After not eating for about 3 days my mom tried to feed me some Jello to see if that would help- it immediately made it worse. She took me to the Emergency Room that night to see if they could help me. They drugged me up, told me to make an appointment with a G.I doctor and sent me home.
I couldn't wait any longer to see my new doctor, but I had no choice, they were totally full. Luckily my neighbor turned out to work in the G.I department at the hospital and was able to pull some strings to get me in early. It ended up being just a few days before my scheduled appointment but every little bit helped.
May 2011
I was finally able to meet with a G.I doctor in May. I was so hopeful that he could finally help me. He performed a basic exam and ran blood tests. He noted that my Liver Enzymes were significantly elevated but other than that everything looked normal. He told me there could be a number of things causing my symptoms. He wanted to start by doing a gastric emptying study to see the rate at which my body digested food. For this test I had to eat a meal (a difficult thing for me at this point) of eggs and toast that were traced with radioactive medicine. I then had xrays taken of my stomach every 2 hours for 6 hours to see how I was digesting food. This test revealed that I was slightly slow in digesting food but nothing serious.
I then underwent an endoscopy procedure to check for any ulcers or celiac disease- both of which were negative. I also had a small bowel capsule test where I swallowed a small camera that went through my digestive tract to check for Chrone's disease- which was negative.
The next step was sending me to a specialist at the University of Minnesota in Minneapolis, which is about 4 hours away from where I live. My appointment was for August. It was still just May.
June-July 2011
During this time I found a few things that helped me get through waiting for my doctor's appointment. My G.I doctor had prescribed me Hydrocodone for pain management and I was still religiously taking my Zofran for Nausea.
As for eating- I discovered that the less fat the better. I cut out dairy and red meat and ate only low fat, easily digested food. I basically lived off cream of wheat, jello, and rice.
August 2011
I finally was able to meet with the specialist at the U of M. His name was Dr. Martin Freeman and he is probably one of my favorite people. He was finally able to give me my life back- but not before I had a few more struggles.
He first ordered an MRI of my pancreas- which is what he thought the problem was. He wanted to see if my ducts were narrowed or blocked which could be causing my pain. I had to drink a disgusting, oily, liquid before the MRI that just about killed me. The actual test wasn't bad- I'm a little claustrophobic but other than the close space it was fine.
The test showed that I had a normal pancreas and duct system. After examining me and asking about my symptoms Dr. Freeman decided that I was a good candidate for an ERCP to treat my Sphincter of Oddi dysfunction. The sphincter of oddi controls the release of liver and pancreatic enzymes into the digestive system. In sphincter of oddi dysfunction, this valve dysfunctions, spasms and causes pain and nausea. He said a symptom of Sphincter of Oddi dysfunction is elevated Liver Enzymes- which I had.
He first ordered an Endoscopic Ultrasound to make sure there were no signs of pancreatitis before he performed the procedure. I had an unfortunate experience during this procedure, waking up halfway through with a tube down my throat, but other than that it wasn't bad. I was heavily sedated but not completely out, which is why I ended up waking up halfway through. Anyways, this test was good so I was able to schedule my ERCP.
I underwent my ERCP in late August. Dr. Freeman performed the procedure and did an excellent job. He first checked my pancreatic pressures to see if the hey were elevated- which is a large indicator of Sphincter of Oddi dysfunction. He said my pressures were sky high and my liver pressures were also elevated. He cut both the liver and pancreatic ducts to assist in draining and hopefully relieve my symptoms. He put a stint in the pancreatic duct to reduce the incidence of pancreatitis after the procedure.
When I woke up I was very sick, vomiting and very dissoriented. After vomiting an entire bag of bile I began to feel better. I was able to go home (to the hotel) the same day. He told me that the procedure went very well but there was a chance of getting pancreatitis after the procedure. He said if everything went well I should be feeling better in a couple weeks.
Unfortunately, everything did not go well and I ended up in the emergency room a couple days later with pancreatitis. I was vomiting uncontrollably and was in a substantial amount of pain. The treatment was IV fluids, pain and nausea meds and food restriction. I was in the hospital for 5 days. Before I went home I also had a bad experience with the nausea medication Compazine. I would highly recommend staying away from Compazine- i had an allergic reaction that was terrifying as well as painful. I had a dystonic reaction, which is when your muscles stiffen and you lose control of muscle movements. They treated it with benadryl and all was fine- but it was very scary.
After getting out of the hospital I was finally able to go home and work on my recovery- I thought I had been through everything and was finally on the mend.
September 2011
About a month after my ERCP I was feeling pretty good. Eating a very low fat diet and drinking lots and lots of fluids. The fluids kept my pancreas happy and the low fat diet kept everything else happy. I was still having some bad days but was feeling much better.
One morning I woke up in agonizing pain. I had never felt pain like this in my entire life. On a scale of one to ten it was a twelve. It was in my upper right abdomen radiating to my back and hurt no matter the position I was in. I went to the ER and the immediately took me back and started an IV. They were giving me the strongest pain medication they had and I was still in complete agony. They ran my bloodwork and had to dilute my blood in order to read my pancreatic enzyme levels. Meaning I had a severe case of pancreatitis. They admitted me to the hospital and were giving me as much pain medication as I could handle. They told me I was taking 10 times what normal people need and I was still in intense pain. I was also vomiting uncontrollably. Most of this was told to me after the fact because I do not remember the week I spent in the hospital.
After recovering and returning home I was exhausted for weeks. It really took a lot out of me, I'm still not 100% with my energy level today. I made an appointment with Dr. Freeman who did the ERCP to have him clean out my pancreatic duct again. He did another ERCP and inserted another stint to try and avoid pancreatitis. Luckily this procedure went very well and I was able to go home that night and not return to the hospital.
November 2011
I was now feeling much better, not 100% but much better than I had been. I was still following a low fat diet with lots and lots of water. No spicy foods or caffeine either, since those irritate the pancreas.
I was even able to enjoy Thanksgiving dinner!!
Today: April 2012
I am happy to say that I am feeling great! I have good days and bad days still, but the bad days are very limited. I still get some pain and nausea after I eat, especially if I eat too much or have too much fat in a meal. I still drink a lot of water and avoid caffeine and spicy foods.
I've gained some weight back after losing about 30 pounds, but I would much rather eat and be healthy than fight this fight ever again.
I really hope my story helped you if you were experiencing these same symptoms. I will post my diet and eating plan in a separate post so it is easier to follow. I will also post Dr. Freeman's contact information for anyone interested in contacting him for help. Good luck in your journey!
