Complications: Sphincter of oddi

SOOOOOOOOOO!

I had my EGD (upper GI endoscopy) with EUS (endoscopic ultrasound). As usual, I was scared shitless beforehand. And it didn't help that my doctor was running 4.5 hours behind schedule. Luckily, my nurse gave me a Valium and it actually HELPED calm my ass down. Thank you, nurse! My procedure only last about 45 minutes. The last thing I remember is my anaesthesiologist putting a mask over my face and saying "I'm going to give you some nice oxygen now..." and the next thing I knew I was waking up in recovery. I had no pain, but did have some bloating and gas pains in my lower stomach from the air they had to blow around inside of me to take pictures. It wasn't bad, though. It resolved itself quickly. The worst part: my throat!!! YIKES! A mixture between the scope and breathing tube really tore up the back of my throat. I had some trouble swallowing solid food for about two days. It was relieved with Tylenol.

The results: My bile ducts are fine. Yay! No blockages, stones, tumors, nothing. No ERCP and therefore no pancreatitis!

They did find some very minor stomach erosion, possibly the onset of ulcers. They did a biopsy, but nothing came of it. Plus, they were not located anywhere near where I am feeling pain. It was so mild, that they didn't feel the need to prescribe anything for it. They will probably just go away.

The diagnosis is officially sphincter of oddi. There was no test to confirm that this is my problem, but based on my clean EGD, EUS, and blood work, this is what my GI doctor believes is the most logical solution.

The only known way to "cure" sphincter of oddi is to do something called a sphincterotomy, which is where they go in with a scope and literally remove the entire sphincter of oddi. However, there is actually MORE of a chance of suffering complications from the procedure than actually finding relief. Plus, there is a very big chance of the symptoms returning after a few months due to the scar tissue from the procedure. The best way to manage this is to find ways to manage the pain and learn what triggers it.

My first step in my road to relief of sphincter of oddi is 10mg of a day of nortriptyline. It is technically an anti-depressant, but only when it is given in quantities of 75mg or more. Anything less than 75mg is used for patients with chronic pain. It will help "block" my nerves from the pain signal. I started it yesterday, and surprisingly I think I have found some relief already. Not 100%, but I'm hopeful I will find some relief after using it for several weeks. I am supposed to try this for 1 month, and then I'll go back and see my GI doctor for a follow up. I do NOT want to undergo a sphincterotomy. Ever. I would much rather move on with my life knowing I have this condition and find ways to just manage the symptoms.

Some fun facts about Sphincter of Oddi that I have stolen from the interwebz:
-A sphincter is a muscle (usually round) that can open and close. When it’s working properly, the sphincter of Oddi opens to allow bile and pancreatic juice to flow through and then closes again. However, in a condition called sphincter of Oddi dysfunction, the sphincter muscle does not open when it should. This prevents the bile and pancreatic juice from flowing through and causes a backup of digestive juices. The backup can cause bouts of severe pain in the abdomen. This is probably why I had a very very mild case of elevated lipase levels.
-People who have had their gall bladders removed are most likely to develop sphincter of Oddi dysfunction. Middle-aged women also appear to be at increased risk for the condition, although doctors aren’t sure why. That's me!
-According to "DISEASES OF THE BILLIARY TRACT, SERIES #2", a study published in 2010 in PRACTICAL GASTROENTEROLOGY, SOD has been diagnosed in 1.5% of our general population. It has been diagnosed in 14-23% of people who has their gallbladders removed, mostly women. (That's a lot!).
-Treatment of SOD is difficult because of the complexity of the disease.
-When you google Sphincter of Oddi, you find nothing but terrible horror stories of people whose lives have been ruined by this disease. I need to remind myself to STOP GOOGLING IT!!! I refuse to become one of those people. First, my pain is not debilitating. On most days, it's about a 2-3. On bad days, it's like a 6-7. I WILL be okay and I CAN manage this!!!

I encourage anyone else with this diagnosis to comment and tell me your experience. Thanks!

Complications

So, I have been feeling great and than I had something happen. The area where my gallbladder used to be started hurting. Very suddenly one morning on my way to work. Unlike on a normal day, I couldn't find a correlation between this pain and food. And it kept getting worse. Therefore, I kept getting anxious. I was scheduled to fly to West Virginia for Memorial Day, so I went to Urgent Care to get to opinion of a doctor and find out if this was something ER worthy. I HATE going to the ER and will do anything to avoid it. The doctor didn't believe it was anything, told me it was probably a stomach bug. I asked her to please test my pancreatic and liver enzymes. In my head, I was thinking that if they came back fine then I would know it was probably unrelated to my gallbladder removal. They took my blood, told me to have a safe trip, and said they would call me when they had the results. Two days later, I get a call and my liver enzymes were perfect. However, my pancreatic enzymes were elevated. Granted, they weren't SUPER high (lipase = 416, amalyse = 140), but it was enough to where she suggested I get an ultrasound of my bile ducts when I got home to make sure I didn't have a gallstone or some other blockage that was pissing my pancreas off. When I got home from my trip to West Virginia, I called my primary physician and he agreed to have me come in and talk to him that afternoon. He called my increased pancreatic enzymes "pancreatitis" (that sounds so scary!!!) and referred me to a GI doctor with the recommendation of getting an EGD (esophagogastroduodenoscopy). He was glad that I had this mild episode of pancreatitis documented. I also had a repeat blood test, which showed that my lipase was back to normal (200) and that my amalyse was at 136 (only 6 above normal - practically normal). So whatever was going on with pancreas went away almost as fast as it showed up. Jeez, man. I went to visit a GI PA and talked to her for a while. She then relayed all of my information to my GI doctor, who suggested that I might have 1 of 2 things: 1) A gallstone. I don't believe this. When Dr. Vierra removed my gallbladder in 2011, he told me that I had absolutely no gallstones. However, just because I didn't have them then doesn't mean I might not have one now. When you no longer has a gallbladder, and your liver develops a gallstone, it will just sit in your bile ducts, therefore causing a blockage of pancreatic enzymes and pain. For doctors, this is the most probable cause of post-cholecystectomy pain. They see very often so I don't blame them for thinking this is the cause. They are just going by statistics. It's just hard for me to believe. 2) Sphincter of oddi dysfunction. In my crazy mind, this is what I have convinced myself that I have. I have read a lot of about it on the internet (because obviously the internet is the best scholarly resource ever... ha!) and I feel like this fits my symptoms better than a gallstone. This is where your bile ducts "spasm" and can cause pain and the slow down of bile, sometimes resulting in pancreatitis or liver problems. It can come and go. I'm not really sure how this is treated. I have read a lot of inconsistent blogs about how people had their SOD dysfunction treated. Bottom line: on Thursday, I am going to the hospital as an outpatient to had an EGD performed. This is where I will be placed under general anaesthesia and my doctor will stick a tube down my throat into my stomach and take pictures of my insides. By looking around, he will be able to determine if I have a blockage in my bile ducts. If I do, then he will then perform something called an ERCP (Endoscopic retrograde cholangiopancreatography). This is when he will be able to insert dye into my bile ducts and take an ultrasound. He then will be able look at whatever is in there and treat it right there on the spot. If he initially looks around and finds nothing in my bile ducts, then it's probably a safe bet that I have SOD. I have no idea what happens after that, but hopefully they can come up with a treatment plan if it does turn out to be SOD! As always, I have a million things I am anxious about. Here is a list: 1. When googling other people's ERCPs experiences, I read nothing but horror stories about how people ended up in the hospital for 2 weeks with severe pancreatitis as a result of the procedure. This freaks me out. It is said that ERCPs are always the most successful when you have them done by someone who is specially trained in the procedure. My doctor (Dr. Michael Mendoza) is apparently an expert in these procedures. According to his LinkedIn (yes, I am a stalker), he actually trained other people who do to ERCPs at UCLA. Maybe this means I won't get pancreatitis again (but much worse this time) and I can just go home after I wake up from the procedure. Before my gallbladder surgery, I googled it constantly and read a bunch of horror stories but I turned out fine. I hope I have the same experience this time. 2. I have to be put under general anaesthesia. I already had this done when I had my gallbladder removed, but I am scared of throwing up. The first time, I was only a little nauseas and then was okay and ate the evening after the procedure. But then the next night, I threw up all night... and again for almost 3 days until my surgeon called me in a prescription for nausea medication. I don't know if this happened because my entire digestive system was like "WHERE IS THE GALLBLADDER? I DONT KNOW HOW TO WORK ANYMORE AHHHH" and just threw up or if was residual from the anaesthesia. Either way, I don't want to throw up again for 3 days. 3. What if they look inside me and find a scary tumor and I have cancer and I am going to DIE AHHHHHHHHH. I know, this is very very unlikely. But seriously??? What if they do?? I just want to know I am healthy. :( In the meantime, ever since my visit to the GI doctor, I have restricted my diet to less than 10g of at per meal. Most days I don't even eat 20g of a fat a day. After about 2 days of this, I feel 98% better. Despite the results of this test, I have decided that this is my life now and I am going to have to eat this way for a while. In a few months, maybe I'll try to reintroduce more fatty foods in my diet and see what happens. I will update this blog after my test and hopefully my experience can help someone else who might be having the same problems as me. Thanks! :-) --Megan