Bile duct/ Slow Digestion Concerns

I had an ERCP done about a month ago. It showed that my bile duct was 3-4 times the size it was suppose to be. The doctor said the reason it was that large is because I had scarring that built up from having my gall bladder removed 13 years ago. The doctor made a small slit in the scarring obstruction and I have been having problems ever since. The next day after the ERCP, I vomitted hot bile and had abdominal pain. Ever since then, I have had nausea, foul smelling yellow diarrhea, sulfur egg smelling breath, and unable to eat normal foods just bland foods such as soup and broth. But, when I eat it feels like it gets stuck in my upper chest. About a week ago, I went to the hospital and my doctor admitted me for about 5 days for testing. He concluded that I have slow digestion and that I am only digesting 32% of my food intake in one hour instead of digesting about 64% as to normal digestion of food in one hour. He also said that the cause of the excessive bile is because of the scarring.  He then put me on 1 mg of Carafate(which is at lunchtime and bedtime), 5 mg of Reglan( which I take 15 minutes before meals), and 20 mg of Prilosic(which I take twice a day). The Carafate at night makes me wake up around 4 in the morning with burning sensation. I have noticed that the Prilosic makes me tired and restless. I asked my doctor about surgery, but he said there is none and that these are the only medicines that I can take for this problem. I was wondering if there are other options out there and should I get a second opinion. Also, will this problem ever get better or are there any other medicines that I could take to fix this? I am sick of being sick and tired all of the time!

[Banned1]

Hi d_hub:

I am so sorry you are suffering.  I've been ill for just over two years now.  I'm not a doctor and know nothing about medicine but I've learned a fair bit since the onset of my illness.  It sounds as though you are describing Post-Cholecystectomy Syndrome.

Forgive me if I'm asking odd questions but I'm trying to get a better picture of what is wrong.  Did you have a HIDA Scan?  Is the 32% an ejection fraction rate?  Is the Doctor you are seeing a Gastroenterologist?  

I'm worried about you.  There are so many things that could be going on with you and it seems odd that he automatically said, "Scar tissue."  Case closed.  No treatment except meds.  No cure.  That's a pretty bleak outlook.  Your symptoms could be SO many things including sludge/stones in the common bile duct, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, Pancreatitis (toxic-metabolic, idiopathic, genetic, autoimmune, recurrent, severe acute or obstructive), etc., etc., etc.  I would definitely ask my primary care physician for a referral to another Gastroenterologist for a second opinion.  There are quite a few specialists on this subject in the U.S.

There are some (less invasive than ERCP) 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.  If 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.   You mentoned diarrhea and this might help with that or there are other medications for this.  The best idea is to get to the bottom of the problem instead of treating each symptom.

Many people have great success with digestive enzymes and pancreatic enzymes.  This is something you need to talk to your primary Doc about before starting.  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.  They take about a month to work and there is some benefit to taking time release as well as immediate release before, during and after meals and snack.  I know of some people who have been "cured" by enzymes alone.  

A low-fat, fibre-rich 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.  Of course, alcohol is a bad idea but when you're sick, you're probably not drinking.   You've mentioned that you are eating mostly soup and broth, so this isn't likely going to do anything more for you.

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.  

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 "pancreatitis" or "digestive" and you will find quite a few groups.  Michele's (Sphincterofoddi_pancreatitis), Cheri's (Pancreatitis_sphincterofoddi) and Maddi's (Digestive-Support-and-Information) are well worth joining.  There is a lot of great information there that might help you.  Since many of us are relatively house-bound or bedridden, this also provides a much-needed social outlet.

When you do find answers, it would be wonderful if you could update us on your condition.  It gives people on this site hope to hear success stories.

Take care of yourself.  Good luck and Godspeed.  Please feel free to email me at any time and I'm happy to do my best to help you.  All the best,

Sam