I'm so sorry that you have had to live thru this. It is nice that you offer the advice for others and you might save a life!
Thanks for your encouragement. If my advice could save even a single life, I would feel that my brother is saved.
I am 4 years post second surgery for choledochal cysts. I have had terrible symptoms and just keep being told I have asymptomatic NASH. I had an mrcp which showed liver enlarged but the pain I get, the vomiting and my inflamed stomach despite very high doses of omerprazole cannot be explained. Slowly I am losing weight, able to eat less and less yet still being told its "just NASH". I feel like I am dying. I finally plucked up the courage to ask for a second opinion so am now waiting for referral. Your post describes exactly the lack of knowledge that most doctors have about these rare cysts in adults. Some days when I vomit constantly I wish I had a simple straightforward cancer where prognosis treatment and pathway is clear. Terrible I know but this uncertainty is torture. If you know what's wrong you can fight it and your not left feeling like your totally alone with a rare condition. It's the frustration and the shattering of a belief that doctors can help that is the worst. In your post I could hear the anger frustration and isolation that getting medics to listen is so hard. It gave me the determination to get to the bottom of this. Thank you
It's been 10 years now after I was operated with Choledochal Cyst. But last year I experienced pain in my stomach and I didnt even know why i am still this skinny as i was after the operation. Thanks for the advice. I might get to the doctor for a check up of my pancreas.
Hi I am thinking of starting a support group for this rare condition anyone interested?
I have had several test 2 ct scans ultrasounds x-rays and MRA and colonoscopy as well as a upper GI,, all of which being pretty much normal. I have been told that I have GERD but don't have much burning in chest. AT one point I had H-pylori, tested recently again and its negative . I was told I have bacteria over growth for second time and now taking xifaxan 2times a day for 30 days , I have had a second opinion and all I get for answers is IBS and GERD, very very vague. I would be ok with that but here is what is going on I have left sided abdomen pain that burns and sometimes feels like jabing once in the while the pain that burns is under my rib cage and travels down ward, now I am taking amitiza 2 txsa a day and prolasec 1 times a day why the burning on left side that hurts and is debilitating like this , I just recently had blood work and am waiting on answers please any help this is really controlling me and making it difficult for me to work , The only test left is a capsule test . The uppe GI i test in June only showed some inflammation in stomach what more can I do without going insane. Not having a real diagnosis is killing me and fear they are missing something they wont look for and its ruining my family life help .
Hi Penny, just been diagnosed myself, and experiencing very little support. Not one consultant has been able to put my mind at ease yet. I still do not know what type the cyst is and been told they will just remove my gallbladder and leave the cyst. This is terrifying me. I think a support group would be fantastic.
Did you start the support group in the end? That would be an excellent idea!
I was recently diagnose with Choledochal Cyst,but I haven't done this surgery yet. They discovered it while doing my gallbladder rocks surgery last year, I had pancreatits after and I'm terrified of having it again.
My doctor said it wasn't so necessary to pass trough a surgery to remove the cyst, but I'm going to see a second opinion since I know this can lead to cancer. :(