How satisfied are you with the inform... - Chronic Pancreati...
How satisfied are you with the information provided by your healthcare providers about CP, EPI and/or RAP*?
For example, how they explained the diagnosis, treatment options, how to manage symptoms, how to take medication, other specialists to see, etc. *CP: Chronic Pancreatitis *EPI: Exocrine Pancreatic Insufficiency *RAP: Recurrent Acute Pancreatitis.
Please select one:
My GPs and, more particularly their dispensers, know almost nothing about it and have been distinctly unhelpful until recently. In the last 6 months they have become aware of the PERT shortage and have actually been quite helpful over that time, though they are still lacking in knowledge and understanding.
My GI team at my specialist hospital, on the other hand, are absolutely amazing and very helpful, not only in regards to my CP, EPI and flares but by supporting me positively when other Drs are being lousy.
GP recommended and arranged for an emergency 2 week window appointment to see specialist.Recievecd 2 phone call appointments only.
Second one taking place 18 months after the first to finally diagnos chronic pancreatitis following a scan.
Zero face to face and zero direction as to what to do next regarding diet or general health.
Luckily I was put on creon early on as my actual GP suspected the reason for my extreme weight loss.
The internet has been very helpful though this support site has been a life saver...thank you.
I have been trying for years to find out what’s been wrong with me. I even had my entire large colon removed because that was the issue and now I’m wondering if it ever was. The current PA that I have at the Gastro office that I go to, I don’t think she even understands much about EPI. I was a piece of paper of things to eat and not eat. And she started me on Creon. I’m sure that is helping but I still have the extreme bloating and she doesn’t really address that. Plus, I’ve never actually seen a doctor there and I don’t think that’s right either.
In Brazil, where I was finally diagnosed (about 3years ago) my GI doctor has been great! But when traveling in the NC and I needed more meds etc. , the doctor I saw did a battery of exams my own Brazilian doctor had requested and when the tests did not show significant numbers, (he called his GI doctor friend for advice, and to prescribe my Creon and other meds) -he concluded “there is no evidence for chronic pancreatitis”. It was humiliating. I have been so much improved, and have taken my creon, and other supplements “religiously” -and with great improvement on my chronic pain. I am so grateful for my Brazilian GI Doctor with whom I continue to treat.
Is it possible that while taking the proper enzymes and supplements, that labs will indicate that I no longer have EPI? I do not doubt my own doctor’s diagnosis. And I do not dare go back to my regular meals diet, nor stop taking the enzymes etc. I DO continue to have chronic pain. Especially if I eat a “full” meal, and especially if I eat meat of any kind. Iam borderline diabetic (per my Brazilian doctor) and I have lost weight and m not regaining it. (I am thin). I lack energy to just get through the day. And I do not sleep well at night.
It is discouraging when doctors “dismiss” a previous diagnosis. How do I find a doctor who really has experience with CHRONIC pancreatitis? Most doctors seem to understand pancreatitis crises, which usually require hospitalization. But they seem to NOT understand nor to even acknowledge chronic pancreatitis. (my CO is of “unknown origin”.
Thank you for asking this question and for the opportunity to share my story.
Sincerely, MS (longingtrustingHim)
