I'm so sorry you are suffering. My deepest condolences on the loss of your Mother. I can't imagine how hard your life has been over the past few years.
Your symptoms could be SO many things including gallbladder problems, Sphincter of Oddi Dysfunction, Small Bowel Bacterial Overgrowth, pancreatitis, etc. I apologize for the length of this post but I really want to help you. I would ask my primary care physician to refer me to a Gastroenterologist. With pain so severe, you probably want to get in as soon as possible.
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.
Doing your own research can only help. Check out the "First Principles of Gastroenterology", http://gastroresource.com/GITextbook/en/Default.htm.
Are you taking Metamucil or a similar daily fibre product? This 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 with abdominal pain 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 if damage is occuring to the pancreas.
A low-fat, high fibre diet can make a big difference to people with abdominal pain. 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.
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.
Consider joining a Yahoo! group for support. Search Yahoo! groups for "sphincter". Both Maddi's and Michele's groups are well worth joining.
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,
Thank you for your response. It was not too long. It was conforting knowing that someone was trying to help me. I am following your suggestions. I will write back as soon as I get some answers. Linda
I'm glad my post wasn't too long. :) I wish you all the best and I'm here for you if you need information, support or a place to vent.
All the best,