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What do I do?

I had my gallbladder removed in '07. three days after the lapro I was in the emergancy room and they told me I had bile leaking in my system.  I was hospitalized for 4 days after being transfered to another hospiatl.  During this time I had an ERCP done to place a stent where the bile was leaking.  After I got home 3 more days passed and I was back in the emergancy room.  The stent that was put in was leaking and had become infected.  I got transferred once again and had to have another ERCP done to replace the first stent.  I had to stay 4 more days in the hospital.  Since this has happened I have continuous diahrrea, vomitting, and terrible stomach pains that occur right at the bottom of my ribs and also in the upper right area of my abdomen.  I am now experiencing kidney problems such as stones.  I had 5 attacks starting in July of '08.  went to the ER 3 times and each time they did x rays and ct scans and sent me home.  Turns out it was the same stone lodged in me for 8 months just growing.  I had the stone blasted and some of my vomitting has subsided.  I have been blown off by several doctors telling me its IBS deal with it.  I have been fired from jobs for it and missed alot of work at my new job.  I dont know where to go from here.  I was up to taking 9 pills a day and Im only 26 years old.  If anyone can help me or has a situation similar to mine please contact me!  
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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/gallstone problems, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, pancreatitis, etc.   I don't know if this will help you at all or not but it's worth your time to read it.  Sorry it's so long.

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 to the washroom, it makes you regular by adding fibre to  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 try now and it reduces the amount of work the pancreas has to do which will also reduce any damage to the pancreas.  You might be able to get them at the health food store, too, but I was advised that they should only have proteases, amlyase and lipase.  

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.

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 have to go to the Emergency Room, 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.  It is also a great way to socialize since so many others are house-bound and/or bedridden because of their suffering.  Everyone there understands how severely this illness spectrum affects every aspects of your life: financially, emotionally and physically.  It also affects relationships with spouses, family, friends, employers, co-workers, etc., etc., etc.

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,

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