I'm really sorry that you are suffering. I absolutely understand. 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 Post-Cholecystectomy Syndrome, 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.
Doing your own research can only help. Check out the "First Principles of Gastroenterology", http://gastroresource.com/GITextbook/en/Default.htm. I would take special note of the biliary system, Sphincter of Oddi Dysfunction and pancreatitis.
Are you taking Metamucil or a similar daily fibre product? This is a great help for MANY people and might help your symptoms. 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.
A low-fat, high fibre diet can make a big difference in your symptoms. Eliminating fried foods from your diet and starting with bland foods, you may get to a point where you have no symptoms. Then you can add new items to see how you feel.
You said that you can't afford to have the colonoscopy or upper endoscopy. If you do need to have a procedure, 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. If you don't have a Gastroenterologist, I would ask my primary care physician to refer me. Once you've been seen by them, they might be willing to try an EUS or MRCP-S to determine what is causing your symptoms. Right now, the 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.
It helps to keep a journal or a blog and your welcome to read mine 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, when you do 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.
I belong to a support group [SODP] that is wonderful. To find it, search the web for Yahoo! groups. Once you have the page where you can search the Yahoo! groups, search or "sphincter". There are about five of them. Only two of them are really worth joining. Michele's [Sphincterofoddi_pancreatitis] is by far the best as she is a registered nurse and an uncommonly kind, empathetic and supportive woman. Maddi's [sphincterofoddi-pancreatitis1] is wonderful, too. Just put in a request to join and within a day or two, they'll let you know that you've been accepted. Hopefully, if you join, you'll say "Hi" to me there?
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,
I have seen a gi spec. I just cant afford to proceed with any more tests.
yes I eat activia, I have benefiber, I have a sec anti acid reflux from gi for when the 2 zegerid40/1100 does not do the trick....as far as things I can do for myself and no I dont do too much I pretty much have covered. Thats why I am concerned.
Thank you for taking the time to give advice it is useful and welcomed. Thank you Sam:)
You are most welcome and I'm so sorry I don't have more ot offer. Please consider joining the group. Other members may have other ideas for you. They've all been there/done that.
All the best,