I have been suffering from significant upper abdominal pain, radiating to my back, 45 min post meals for the past 7 weeks. Lost 10 lbs on an already trim body in this time. It started with an episode of intense pain/cramping upper ab and have been in pain ever since. All blood labs have been normal (incl pancreatic enz), clean ultrasound (except for two hemangiomas on my liver that were same size since a previous US 2 yrs prior) but HIDA scan showed 0% ejection fraction, so my gallbladder was removed 3 weeks ago. Pathology showed the gallbladder to be normal, no stones and I continue to have the same pain and can only comfortably eat if I take Actigal prior to food. Last week had an MRI with contrast that showed normal pancreas and some dilation of liver ducts. The GI told me to sit tight for a couple of weeks. Could this all be due to stress hormones? I am in the process of moving out of state, so could dealing with the stress less well than I think I am. The HIDA scan results have me perplexed
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, Post-Cholecystectomy Syndrome, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, pancreatitis, etc.
If you are really suffering, you could always ask for sustained action pain medication so you can function, especially while you are moving. They are difficult to wean off of but make a huge difference to quality of life as time goes on. The thing is, in the beginning you think, 'I just need more time to heal.' I'll be okay soon. By the time six months has passed and you realize that nothing has improved with your gb removal, you've wasted six months and your doctors will want to know why you've waited so long to speak up.
In you case, the HIDA with an ejection fraction of 0% means that there was no choice in removing your gb. It had to go because it wasn't working at all. The problem is, whatever caused your gb to stop working could also be causing damage to your pancreas and/or ducts. With abdominal pain and dilated ducts, that is the definition of SOD II. Here is a great article on SOD,Sphincter of Oddi Dysfunction: Diagnosis and Treatment
There are some less invasive tests such as the Endoscopic Ultrasound (EUS) and MRCP-S (Secretin) which can image the whole thing including 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.
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 reduce any damage to the pancreas.
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. This is critical. 20% fat per day should be a max. Alcohol is out of the question.
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). :) It's a great way to 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,
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