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!
Hello Megan! G.B.L. Karen in da house. :) Here's to your continued healing - are you feeling better? Thanks for your incredibly thorough research regarding the Sphincter of Oddi - sounds like a Star Wars character, doesn't it?? Way before my gallbladder surgery, my gastro doc told me about how invasive a sphincterotomy is and how it isn't always the answer in terms of permanently relieving pain, so I don't blame you one bit for electing to not go that route. Sounds like you've got a plan you can live with for now - amazing, the crap we've got to go through sometimes. I'm nearing the 12-week mark and can honestly say that I feel the best I have since my surgery. I'm still sending good vibes your way - let us know how you're doing, and enjoy your summer.
ReplyDelete-Karen
I have created a website dedicated to the discovery of a natural cure to SOD. I am asking people to view the page and share any info they might have.
ReplyDeletewww.thesphincterofoddiproject.com
hi Meagan Tammy Kaufmann here I was diagnosed with sphincter of oddi in 2012. I have had blocked bile duct ans blocked pancreatic duct numerouse time I have had 4 surgeries last one very aggressive back last December. my son started selling products from a company called it works and is a avid health and workout maniac!! while attending a conference he called me sooo excited about a new probiotic that targets the small AND large intestines. I have tried sooo many products and thought yeah right but gave them a shot I drink greens on the go everyday because they give you all your fruits and vegatables for day which I cant eat because I have bathroom issue with sphincter of oddie!!! I began my probiotic a month ago and I cant believe my bloating is down and regular bathroom for me is a miracle in itself! I have struggled and been depressed at times over last 4 years and I want to get word out to help people I never thought these products would help like they have! I'm so excited for the first time in a long time I do watch diet try to avoid fats at all cost! Food journal has helped but sometime not because you can eat something 1x and not the next! well I'm hear to tell you I'm eating again without pain! please contact me @tkaufmann02@gmail.com or feel free to shop now for it works probiotic! it will help you!! Tammysgreens.itworks.com I'm not trying to sell you something just to sell, I'm so excited that I'm feeling better and that's been a long road for me please give it a try your body will thank you !
ReplyDeleteHi Megan, My name is Dani and I take care of someone who we suspect has a sphincter of Oddi problem where it contracts too often/too hard and is causing severe/debilitating pain. I wanted to reach out and ask if you've come across anything that you have found to be helpful in managing your symptoms. Any information would be helpful. Thank you!
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