I'm really sorry that you are suffering. I'm not a doctor and I know next to nothing about this stuff but I'm learning through my own illness. Your symptoms could be SO many things including sludge/stones in the CBD, gallbladder/Post-Cholecystectomy Syndrome, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, pancreatitis, etc.
The metallic taste is common with pancreatitis, duct, gallbladder and other biliary problems. So are the chronic back pain radiating to your middle back and right shoulder blade, irregular bowel movements, fatigue, frothy urine and abdominal pain. [I have all of that.] Many of us have pain so severe, it's debilitating so I'm glad you're not that bad. Also, I'm told that many people with biliary problems produce less saliva and this seems to cause bleeding gums and a host of other dental issues.
I'm not sure how your Doc can diagnose you with Gilbert's without appropriate testing but with the bilirubin, it's possible. There are some less invasive tests such as the Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) which can image the pancreas and ductal system. The EUS does require sedation and is similar to an upper endoscopy. Once you have a Gastroenterologist, they might be willing to try an EUS or MRCP-S to determine what is causing your symptoms. Right now, EPISOD studies are being conducted in the United States which might be a way to get to the bottom of your symptoms without the cost if you qualify and can't afford health care.
Metamucil or a similar daily fibre product is a great help for MANY people with abdominal pain. It does not make you go, it makes you regular by adding fibre to the watery stools, making them firm.
Many people have great success with digestive enzymes and pancreatic enzymes. This is something you can talk to your primary Doc about. I'm told that they won't do any harm so really - unless you have side effects - there's not a downside to trying them. Your Doc might even have samples. This is something you can do now and it reduces the amount of work the pancreas has to do which will also reduce any damage to the pancreas. You can get them at the health food store, too, but make sure they only have proteases, amlyase and lipase.
A low-fat, high fibre diet can make a big difference. Eliminating fried foods from your diet and starting with bland foods, you may get to a point where you have no pain. Then you can add new items to see how you feel. Less than 30 grams of fat per day is a great starting point.
It helps to keep a journal or a blog and your welcome to read my first entry if you want but I write a lot (can you tell). :) Medhelp.org has a free journal on everyone's profile page. It's a great resource and it helps you review your situation objectively and identify patterns in your foods, symptoms, medications, bowel habits and pain level. Hindsight is 20/20 and keeping a log might help you look at things more objectively over the longer term. Also, if you go into Emergency, you can say, this has been the pattern...
You are not alone! Try to stay positive and reach out for support when you need it. Talk to your Doctor, family, friends, co-workers, church or social service volunteers or anyone you feel safe with.
Search yahoo! groups for "Sphincter", you will find quite a few groups. Both Maddi's and Michele's are worth joining. There is a lot of great information there that might help you.
When you do find answers, it would be wonderful if you could let us know the root cause(s) and how you got rid of your pain. It gives people on this site hope to hear success stories.
Take care of yourself. Good luck and Godspeed. All the best,
Many thanks for your comments!
It's just so frustrating, and takes an age for anything to move forward. In the mean time, i'll just have to watch my diet and stay positive.
I will keep you updated with results.
sounds like possible pancreatitis...
this would be from the alcohol use and would perfectly fit your sympyoms.
you CANNOT DRINK WITH PANCREATITIS!!
id have the pancreas evaluated,,keep in mind this is a progressive disease,and can if not taken seriously and get treatment progress to ...well lets just say can get to where you will never have to worry about ANY of your problems again!!