Miserable Mystery Condition

[Osoni]

Four months ago, I came down with a terrible stomach flu. It lasted about 48 hours and included nasuea, vomiting, cold sweats, shakes, low-blood sugar, etc. Ever since then, I've had nausea and drowsiness after I eat something. For the first few months I could eat wheat bread, pasta, bananas, potatoes, and apples were especially good. Sometimes I would get a reaction, but it was manageable. Over time, however, it has gotten worse. Now, fat-free saltine crackers are the only thing I can eat without feeling sick, and even then I need to take it slow. It seems related to fat content, but Vitamin Water and almost all medication also make me extremely sick. I've lost 40 lbs. over the past 16 weeks.

I saw my regular doctor about it soon after it all started. Since then, I've seen two GI doctors, an ENT doctor, a neurologist, and a surgeon (a family friend who squeezed me in for an appointment). I've had the following tests done: a CT scan of the GI, a MRI of my head, a hidoscan of the gallbladder with CCK (came back at 43%, well above the "normal" 35%), a test for delayed gastric emptying, a test for glucose tolerance, an upper endoscopy with a biopsy, a ciliac panel, and over a dozen blood tests. All of them came back with normal readings and all 6 doctors have no idea what's going on.
Fenergin doesn't help; in fact, all medicines make me extremely ill.

Interestingly, I saw a urologist recently and in about 30 seconds he found I had a prostate infection. He gave me antibiotics for it, but I cannot take them without feeling extremely ill. Its like trying to treat athlete's foot with amputation. Most of the doctors think having my gall bladder removed might help with the drowsiness and nausea, but I'd hate to have the surgery and see no changes or even make things worse, if that's possible.

I've had to move back in with my parents, and even with their help I'm just barely making it through each day. I guess I'm just hoping someone has an idea for me, though I doubt there's really anything left "in the books" to try.

[Banned1]

I'm so glad they found the likely cause and that you will be able to graduate as you had hoped.  I wish you all the best!  Thank you for posting this.  I'm sure it will help others who have eliminated all other gastrointestinal causes.

All the best,

Sam

[Osoni]

Thank you for your post, Sam. I have an update! The doctors believe I have something called Cyclic Vomiting Syndrome, or CVS. I narrowly avoided unnecessary surgery. I was to have my gall bladder removed in two days when my endocrinologist suggested that I might have CVS! They had me try various foods which I had been avoiding because I thought were making me ill. I was anxious about it, but lo and behold, I would get sick in the afternoon at approx. the same time every day no matter what I ate! It's really quite bizarre.
The good news is that I am eating normally again, which by itself is a tremendous improvement. The endocrinologist who suggested CVS has me taking Amitriptyline and Levipro, along with Ondansetron (Zofran) for the nausea. It does seem to help, and while I still have good days and bad days, I am able to go to work again. I was able to walk across the stage at the LSU graduation ceremony. My family and I thought I wouldn't be able to make it, so that was great. I'm cautiously optimistic that the drugs will help me get over the CVS before I begin graduate school in the Fall.
I just wanted to post an update, in case someone else is suffering like I was. The only way to diagnose CVS is by ruling out everything else, so if you are running out of gastrointestinal tests to take, ask your doctor about Cyclic Vomiting Syndrome. I hope I can save somebody from unnecessary surgery and many months of discomfort.

[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.  The first thing I thought when reading your post was Celiac but your symptoms could be SO many things including microscopic sludge/stones in the common bile duct, gallbladder (even if they have judged it to be okay), Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, chronic pancreatitis, acute pancreatitis, minimal change pancreatitis, autoimune pancreatitis, etc.  

There is a test called an 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 but it is the gold standard for digestive problem identification.  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.   Why not try it for a month and see if it helps?  

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, fibre-rich diet can make a BIG difference.  It sounds as though you aren't eating very much anyway but 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 as sick as you are, you're not even tolerating water well.

It honestly helps to log everything that goes into and out of your body as well as how you feel.  It will help you identify any patterns and may lead to a Eureka! moment if you start to notice any cause/effect relationships.

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 Michele's and Maddi's deal with sphincter of oddi dysfunction, pancreatitis and undiagnosed symptoms and are well worth joining.  There is a lot of really interesting information that might help you, too.  Since many of us are relatively house-bound or bedridden, this also provides a much-needed social outlet.

Take care of yourself.  God bless, good luck and Godspeed.  All the best,

Sam