Middle back/Upper Abdomen Symptoms

[Roy1234]

I’m 33, not over weight and lead an active life. About 3 years ago I noticed a change in my urine; it suddenly became very frothy. I went to the GP with fatigue symptoms as well. I had blood/ basic urine tests which came back fine, apart from an elevated bilirubin level (more than double the expected level). The GP wasn’t concerned about this and without further tests, said it was Gilberts Syndrome.

4 months ago I had what I think was food poisoning, although I will never know. I had severe stomach pain, diarrhea, but worryingly a fair bit of blood. The symptoms subsided but several additional symptoms have remained to this day, which are.

• Metallic taste every morning, sometimes during the day.
• Daily Presence of blood mixed in with saliva. Not sure if this is from bleeding gums, but I don’t not have gum disease.
• Chronic back pain which appears to move around my middle back and under my right shoulder blade
• Constipation/completely irregular bowel movements
• Fatigue
• Frothy urine (which hasn’t ever subsided)
• A slight pain (similar to a stitch), which is located 2 inch up/to the left of my navel. The pain comes and goes.

The first three symptoms seem to worsen with alcohol. I have now cut that out. Although I’m not ruling out the possibility that this may be the cause as I DID like a social drink, 3/4 pints a night 3/4 times a week for many years. However, all tests have always indicated that my liver/kidneys are functioning fine. Therefore until now I’ve never really connected the two, if that is the problem.

I’ve had numerous tests recently including Chest X-ray, blood tests, ultrasound of upper/lower abdomen, Cat Scan, laparoscopy, gastroscopy.

They found a small Kidney cyst which have confirmed is of no concern. I had two small polyps removed and given the all clear. There was inflammation of the duodenum. I was given a stomach acid suppressant to clear the inflammation. But to be honest, all the symptoms still remain.

Finally, the bilirubin level was still elevated, the result of which was sent to a specialist and they are now looking at enzyme levels to see if I do, in fact, have Gilberts. Could this have been the problems all along? Would the numerous tests already carried out indicate that there was a problem with my liver?

With all of these tests, I’m not sure what to do next. I’ve cut out alcohol/change my lifestyle to ease the symptoms, but without knowing what’s actually causing the symptoms, I’m just feeling a bit cheated/stressed out!

Can anyone help?

[Banned1]

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,

Sam

[Roy1234]

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.

Cheers.

[crambone]

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!!