About 12 months ago, I began noticing a pain in the upper right quadrant of my abdomen. At first I thought it was a muscle strain and paid little attention to it. However, it would not go away and progressively got worse. At the same time, I noticed big changes in my stool. The color started to get paler and instead of occaisional diahrea, I had it all the time. I started noticing undigested food in my stool. Finally after about a month, I went to my doctor. I suspected that I had gallstones since they occur a lot in my family. My doctor suggested an ultrasound which I had around September. The ultrasound showed no abnormalities. My doctor prescribed Prilosec. My problems continued unabated.
Over the course of a few months, I then had a HIDA Scan (ejection fraction of 98%), an upper endoscopy (revealed small hiatal hernia and minor reflux), a CBC blood panel (everything normal) and a Barium swallow (revealing a small hiatal hernia and a small zenker's diverticulum). According to the gastroenterologist, none of the ailments discovered could explain the level of pain I was experiencing.
At this point the Dr. recommended removing my gallbladder. Thus, it was removed in December. The only improvement I think I got from that was a little better tolerance of fatty foods and a little darkness returned to my stool (diahrea continues however). The pain never left....it just kept on in my upper right quadrant.
Finally, in February, I was sent for a CT scan (everything normal except a few very small cysts were discovered on my liver). The doctor said the cysts were not unusual and that they were nothing to be concerned about. Since February, the pain I have been experiencing has gotten progressively worse. It is a very sharp stabbing pain in my upper right quadrant and a dull pain in the very upper center of my back. This pain is NON-STOP it does not come and go....though it is worse at times than it is at others. A lot of times it feels like someting is raw, infected or inflamed in the upper right quadrant.
I have recently gone to a different specialist in New Orleans to see about testing for Sphincter of Oddi dysfunction. He first wants me to do an endoscopic ultrasound to check to be sure there is not stones or sludge in my common duct (bile duct and pancreatic duct). That is scheduled for June 15th and I really don't know if I can make....the pain is THAT bad. I am so worried that my pancreas or liver is digesting themselves. Recent blood work showed normal pancreatic enzymes though. All I know is that I am in so much pain that it makes me feel as if something terrible and irreversible is happening to one or more of my vital organs.
I plead with anyone out there with advice or suggestions to pleas provide them...I am so afraid I am dying. I look forward to your responses.
I couldn't believe it when I read your post. You and I could be twins. With a few small exceptions, I am experiencing the exact same thing you are. It's as if I wrote your post myself. I too had a high ejection fraction of the gb (97%) and was given a 50/50 chance that the pain would resolve with gb removal. It didn't. I did have the endoscopic ultrasound (piece of cake) but sadly they didn't find anything abnormal. The next step for me would be ERCP to evaluate the sphincter of oddi disfunction theory however I'm a little leary of the potential for pancreatitis (a risk of the procedure). I wish I could shed some light on what you're going through. I have struggled with this for five years and just can't understand why they can't find an answer. Pain this bad has to come from somewhere. Mine, like yours, never goes away. I've had close to every conceivable test there is and they find nothing. I'm praying for that miracle right along with you and refuse to give up hope that an answer is just around the corner. I wish you all the best. If you should ever find an answer, I would be truly grateful if you would pass it on to me. My email address is If you want to send me your email address, I would gladly share any information or help I come by. I feel your pain, literally. I keep telling myself that what doesn't kill me, makes me stronger. That seems to get me through for now. I won't give up though, I hope you don't either. Take care!
Laurie
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PS We have best hospitals in Baltimore Johns Hopkins and they still dont know!
Good luck
I am so excited to find this site!!!! I am not alone after all. I had blood tests, scans and upper GI endoscopy (?) and I was told that there was nothing and it is probably just chronic pain. I can't believe this - pain is a symptom of something and I refuse to just let it go.
Recently, I tried a wheat free, dairy free diet. I lost the pain. For some reason (Christmas cookies, etc?) I couldn't stick to it. I have good days and bad with the pain. Right now it is the worse it's ever been.
With celiac in the news so much, I researched that. I am thinking of being tested. I think that the upper intestinal area could be quite compromised with damage from this disease. It's more common than they think right now because the wheat we eat is so genetically modified from what our ancestors ingested - our bodies just are not made for it.
I am calling the Dr. today.
Good luck all and please keep us all posted - sounds like we need to stick together!
Well thanks for "listening". Hope to hear about some successes.
Wow! You have told my story except I still have my gallbladder. I have been experiencing pain in my upper right abdomen for almost a year. It got really bad in January, I had an ultra sound, nothing. A HIDA Scan, nothing. A CT Scan, nothing. I was referred to a GI Specialist who said my symptoms are not from my gallbladder because all the test proved that. He said I had IBS, I told him I don't have any symptoms of IBS, he told me that I had a mild case and that he really thinks my pain in musculoskeletal. I didn't agree with him and he pretty much blew me off. In the meantime I've been seeing a naturopathic doctor who has me taking Dipan-9. It has helped with the digestive problems that cropped up two months after the pain in my side started although the pain is never gone. I also have been going to a massage therapist who has applied Visceral Manipulation, (very painful but worth it) I have been feeling somewhat better and have had less bad days but the pain continues. I made such a stick with Kaiser about the lack of help I was getting, the GI Specialist agreed I should have a colonoscopy/endoscopy done. I agreed to it and the results were that I had a Hiatel hernia and some evidence of acid reflux. No parasites were found and no sign of infection. His recommendation is to go on Prilosec for two weeks, if that doesn't help then we will do another blood draw and if that doesn't show anything significant then he's sending my back to my primary physician to help me manage my pain. Manage my pain?? I don't want to manage my pain, I want to find out what's causing the pain. All through this the GI doctor had been claiming IBS but since my procedure he's going back to musculoskeletal. He's basically washing his hands of me and sending me back where I came from. My naturopathic doctor has had me on a no/low carb diet since May, I feel better over all but it has not stopped the pain. I also thought of Celiac but I don't have most of the symptoms and my pain and digestion problems still persist even without eating grains of any kind. I find it interesting that all of us have the same thing, upper right abdominal pain accompanied by hiatel hernia and acid reflux symptoms. The acid reflux and indigestion didn't start until a couple of months after the pain started. I've never had trouble with either until now. Hmmmm. I really would like to know what this is. If anyone gets an answer, please let us know