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Avatar universal

RUQ, ABD Pain, Nausea, Fatigue, And More

This is long. I had my gallbladder out in April of 2005 and everything was ok then I started having horrible diarrhea, nausea, weight loss and stomach pain along with RUQ pain. I saw a Gastroenterologist who had me do an MRCP and they found a small choledochal cyst. She then had me do an ERCP to take a look at my stomach and surrounding areas and then decided to do another one, about a month later, more extensively, to look in my bile duct and cyst. When my gallbladder was taken out they saw I had papillary stenosis. During the second ERCP they placed a stent in my duct and about 5 days later I was in the worst pain since my gallbladder attack and I was feverish and weak. I went to the ER and I had pancreatitis where my levels were almost 4000. I was in the Hospital for 5 days almost and released. I ended up going back for a 3rd ERCP to have the stent removed. About a week after I started having horrible nausea and vomiting where almost anything I ate, I vomited, including crackers and water. I talked to my doctor and they didn't know what to think so I went for a 2nd opinion. That doctor had me go in for another MRCP and although she could see nothing wrong other than the cyst, she referred me for surgery. I didn't really enjoy that though so I skipped the consultation. It is now 2009 and I am very frustrated and upset and sad. I have been in and out of my gastroenterologist's office and primary care with persistant RUQ pain and abdominal pain and they pretty much were like we don't know whats wrong. I was actually pawned off to my gynecologist who was like this is not gynecological this is gastro. I have been in and out of the ER because pain levels would get so bad in my stomach and upper right quadrant and the nausea would be uncontrollable even with my medication I had been prescribed. They keep discharging me with "undiagnosed abdominal pain," and one time I actually had the doctors tell me nothing is wrong with me, its all in my head...while I was vomiting yellow bile. Also I have been told its my depression and to see my shrink. I have lost almost 80 pounds since this all started and now the symptoms seem to be getting worse and not better. I am in chronic pain everyday on my right side and abdomen, the pain has actually moved over to my lower left side and sometimes goes into my back. I am nausea everyday and sometimes I can only eat one meal a day and even that wont stay down or I will have horrible diarrhea within 30 minutes of eating. I am fatigued every day and weak on and off along with headaches every once in awhile. My nails seems to be turning almost yellowish with what looks like little lines down them and they break easily now. I am unsure if that means anything though. I also will have bloating sometimes to where I was asked how far along I am because they thought I was pregnant. My doctors wont prescribe any medications so I take 800mg Ibuprofens for my headaches and to try and help dull the pain but it only helps the right side and back because since I have nothing in my stomach it upsets it. What frustrates me is I have looked through some of my clinical notes and my orginal gastroenterologist noted that I should see a surgeon but she never told me that and never referred me. Also from what it looks like I have never had a thyroid test or tested for anemia or iron deficiancy. I am beginning to regret not consulting with the surgeon because from what I have read, a choledochal cyst, like the one I have, can cause all my symptoms, as well as put me at risk for bile duct cancer. I have talked to my psychiatrist in length about what is going on and he is upset that its being written off as psychiatric when it is in fact something medical going on. I don't know what to do anymore or where to go or who to turn to.
4 Responses
Avatar universal
I am angry for you, if your docs are to incompitent or uncaring to nfind an answer then refer you, I am going through similiar yet different situation, read my post. The ditention that makes you look pregnant could be ascites, due to liver damage. Weight loss is a strong symptom!!! Something is wrong. I would insist on a new Dr or refuse to leave a ER untilyou have an answer. I don't want to scare you but this could be killing you, what are they waiting for? Tell your Gastro that you want every GI blood panel there is and take those results to a new doctor. Better yet insist on being admitted to a diagnostic hospital like the Cleveland Clinic for a thourough work up, MRI and Cat scan and ultrasound and exploratory surgery. I really do not think any of this is over the top. I know it sounds drastic. I am a hospice nurse, I see people, usually old though who can't understand why they are dying from one thing with  symptoms unrelated ,usually they have some sort of cancer that the Doctor never found or bothered to find and there death weighs on the families mind as a mystery. I am not saying at all that this is what I think you have not at all, I tell you this to demonstrate that Drs don't know everything and they are just PRACTICING medicine afterall!
Avatar universal
Thanks for your concern..I appreciate it. Luckily my stomach hasn't been that "swollen" or bloated in awhile but it does occasionally just not that big. I had had so many tests that it makes my head spin and all they can say is we see nothing wrong. I have had several blood tests and they keep saying they are normal or fine. From what I understand is when you have pancreatitis that bad where your levels are almost 4000 that it can cause permanent damage and my psychiatrist is concerned about that. I live in Seattle so I don't know of any diagnostic hospitals and I didn't even know there where ones! I have tried and insisted and no one listens to me. Its very fristrating and discouraging to where I just want to give up and just learn to deal with the pain and symptoms but then again that is no way of life. It doesn't sound drastic and I am concerned about my health too. So are my family and friends. I went to the ER in December and it took 4 hours after I got into a room for them to give me anti-nausea medicine and then another hour to give me two percosets..Its like the doc didn't even look at my chart and see that percoset makes me ill. How frustrating! I have tried new doctors and still nothing. The last GI doc I went to pretty much looked at me and said well you have seen some of the best doctors in the state so I don't know how I can help you. I was shocked. I was looking at her like, well they cant be too good if I am looking for 2nd opinions, you know? I will go look at your post here in a few moments. Thanks for taking the time to look and respond.
Avatar universal
AnnaFire, the problem you're having could indeed be related to the cyst or possibly to SOD (sphincter of Oddi dysfunction) and it needs to be more fully explored. But you're probably going to have to go outside of your regular GI docs unless they specialize in those types of disorders. SOD is a very specialized condition, as is the presence of the cyst, and if you're going to have anything done, you need to seek out specialists for that treatment since both conditions can be very difficult to treat. Check on the yahoo boards for the SOD group and talk to the people on that board. They know the names of the docs who routinely treat SOD and can tell you the in's and out's of the condition.

If you do have a cyst and it is at the base of the problem, that also means a specialist because surgery will be necessary and depending on where it's located that surgery will change a lot with your digestive system and how it's configured and works.

Please don't let anyone tell you this is in your head. It's not! And it a damned shame when docs try to pass off the problem in that manner. They're only doing it because they don't know what they heck to do for you - displaying their ignorance.
729009 tn?1237330483
University of Washington I think would be the place to go for you - they are a major 'teaching' hospital.

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