Diagnoed with functional Billiary Dyskinesia. What should I do?
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Hello,
would greatly appreciate feedback.
Recently diagnosed with a functional gallbladder disorder. No stones were found contributing to my symptoms. It appears thatI have a motility disorder of the gallblader. I was told to have a DISIDA (HIDA) ejection scan and if the percentage was less than 35% I would require surgery. However, the literature shows that the results of this test, whether low, normal or high are unclear and not definitive. Also approximately 15-30% of people who have this surgery experience post surgical complications and may continue to have the symptoms that led to their having surgery. According to the literature, the ROME 111 is the most accurate and reliable basis for diagnosing Billiary Dyskinesia.
In addition, general anaesthesia for patients in their 60s and older are potentially more vulnerable to experiencing cognitive issues post surgically. If on certain medications, such as benzodiazepenes, there is a greater risk of delirium and,/or cognitive loss due to general anaesthesia. Also, if functional gallbladder symptoms such as IBS, functional dyspepsia etc, coexist with gallbladder symptoms, these symptoms may not resolve with the excision of the gallbladder.
There are studies that show the abdominal Ultrasound, which is considered the gold standard for evaluating the gallbladder, does not always identify the actual pathology causing symptoms, which is subsequently found during surgery. In addition, a recent study noted that removal of the gallbladder led to a significant increase in fibrosis liver disease and cirhosis.
So, although I'm experiencing gallbladder symptoms ((intermittent pain radiating to the shoulder and back, nausea, gastric pain, belching, and flatulence) which are functional, not organic, because no stones were found, I am very concerned regarding having this surgery. My concern is not based on fear of surgery, because I had number in the past, but based on the potential complications specifically pertaing to gallbladder surgery which appear to be played down by certain surgeons. In fact, my surgeon informed me that there was no guarantee of elimination of some or all my symptoms!
I would appreciate feedback from members of this forum who were diagnosed with functional Billiary Dyskinesia, and their decisions whether to proceed with surgery, and if so, their outcomes.
Thank you.
Jerry
1 like, 1 reply
colleen03915 jerry86446
Posted
Hi Jerry! Approximately 7 weeks ago, i was also diagnosed with Biliary Dyskinesia. I have suffered for close to 30 years with severe digestive issues and severe stomach pains after eating and was told by almost every doctor that it was IBS and lactose intolerance. I switched GI doctors this year and I'm thankful I did. She called for an abdominal US which showed 2 stones in my gallbladder. She immediately told me to see a surgeon right away. I found a great surgeon and made an appt. He didn't want to just take out the gallbladder until he determined if it was functioning or not. I went for the HIDA scan which showed it was functioning at 7%. Basically, he said it wasn't functioning at all and suggested I have it removed. He also stated it may or may not alleviate my issues, but could help me considerably! Keep in mind I've never once had any pain from the gallbladder and no other doctor ever suggested I have it checked. I did my research of course because I wanted to know absolutely everything I could about the gallbladder itself, as well as the risks, the rewards and everything in between. Having suffered for so long, I made the decision to go ahead with the surgery, hoping it would help me even 25%...I'm happy to report that as of today, 5 weeks later, I've had only 1 food related issue which caused me diarrhea (I ate pork with some gravy, bad move), but I had no pains that were usually associated with this in my stomach. For the month after surgery I was on a low fat diet and I keep a food journal of everything I eat. I will continue to eat low fat foods and I know I'll have to cut out certain things, which I'm also okay with. I was never able to eat soup before without suffering, now I've had it with no issues. It will be trial and error for me for sometime, but I have never felt better!
Now, as for the surgery itself, I had the robotic surgery which was roughly a 90 minute surgery and I had to stay overnight in the hospital because I was in some pain after the surgery, plus I live alone. I have 4 tiny incisions that have healed nicely. The recovery was a good 4 weeks before I felt like myself again...only because the one incision where the gallbladder was removed, took a little longer to heal. Honestly, I'm so glad I had the surgery because I feel like this gave me the best chance at living a normal life...some people don't understand how depressing it can be to suffer like this. I haven't enjoyed eating in almost 25 years, going out to a restaurant was always a fear because I just didn't know if I would end up having to rush home because I had to go to the bathroom so badly!
I hope this helps you even a little bit, Jerry! If you have any questions or would like to chat, please get back in touch. I'd like to hear what you've decided (unless you've already had the surgery)! : )
Colleen