I would love to hear what others say about this too. My dh's doctor at OSU basically told him, "we don't need to see you again unless you develop nonstop abdominal pain." Is that normal?

Hi Cowgirl. I go to the Gastroenterologist at least twice per year or more frequently if problems persist. I have an endoscopic examination approximately once per year. Fortunately, I have a very good medical team keeping an eye on me.

My GI has been seeing me every 3 months once I went back to work and wasn't having major issues. When I was first diagnosed and under different treatments as we worked to get my symptoms under control, it was 4-6 weeks, especially while i was losing weight. He's also available by phone or email for questions.

My second ERCP left me with a 5cm mass over the tail. The first GI to see that report insisted I have a distal pancreatectomy to eliminate the psuedocyst. Fortunately, an EUS determined it is not a psuedocyst but could not determine what the mass is. Even more fortunate is I didn't have the surgery which can bring about a lot more problems. I still have chronic pancreatitis and subsequent Radiologists have called the mass several different things. Point is, my GI said there is no protocol for monitoring pancreas anomalies so we're making it up as we go. Over last five years: First, MRI every six months, then every year. Though still there, the mass has shrunk and general consensus is it's benign. Not much can be done about the pain but GI has told me to contact him if symptoms increase. I'm convinced current medical knowledge is very limited regarding the pancreas. It seems many would like us to think they know more than they really do. I'm working hard to keep the doctors out of my pancreas and there is going to have to be a very good reason for me to let anyone in there again.

I don't know either. I had all the pancreas removed except the head, and the Spleen too. I was not told what to do after that except to go to pain management. I hope someone will come up with some help too.

I agree with twoduct that the level of lack of knowledge and expertise about the pancreas is astonishing. There are huge medical advancements in so many fields, like heart disease, ophthalmology etc. but we seem to be stuck in the Dark Ages when it comes to the pancreas. My GI also is vague about follow-up: he basically asks me when I think I should come in for follow up. I was being monitored about every 4 weeks until the Creon halted and then finally reversed the free-fall weight loss which was terrifying. He did suggest that we do a CT scan w/contrast once/year to monitor for pancreatic carcinoma since there is increased risk for CPs. Other than that, he seems to be leaving it up to me. I also got no guidance about diet-- just told "figure it out for yourself" which I am doing with the help of this blog.

I saw my GI every 3 months for the first after after my surgeries. Then every 6 months for a year. Now I go annually, have tests like EDG, and follow up in 6 weeks. Then see him again in a year. Before this last surgery I skipped seeing him for several years and never went to the ER when i was sick. My pancreas specialist retired and the GI that took on my care was hard to get in to see. Plus I was stubborn. I was determined to handle it on my own. My previous pancreas specialist told me that i only needed to come in if i lost 10 pounds in 1 week. Big mistake. I nearly died. Definitely go at least once a year. Any competent GI would want you to monitor your health.

ive had this for 4 years and 5 operations 19 hospital stays I don't see my gi at all I only see my reg doc I just take enough pain pills to keep me happy if the attack is a bad one I take more pain pills if I take more than 3 doses in a 5 hour period I go to the hospital

I am kind of lucky because of my blood disease I have to see my hematologist every four weeks and if I need anything done regarding my CP he handles it & calls my GI and chews him a new one. I get labs done every four weeks & he checks everything and I usually end up getting 2- 3 liters of saline because I am dehydrated plus potassium & magnesium. Now I will be getting IVIG treatments too, because I IgG deficient.

Maybe everyone should see a hematologist instead of a GI...you get better treatment thats for sure...

Sometimes Insurance does the planning for you in terms of when you see your Dr. I am sure there is some point it would get too high. But if I can go t the er once every two weeks for 5 months

I would imagine you would have a local dr who can pass infomation on to the guy who is a thousand miles away. Although if you have the means to see him or her then.

My pancreas specialist sees all her CP patients every 3 months. If I have an issue that I cannot control from home, I have to go into the hospital. I try VERY hard to take care of my issues at home!!!