What is Pancreatitis
Chronic pancreatitis can present as episodes of acute inflammation in a previously injured pancreas, or as chronic damage with persistent pain or malabsorption.
Patients with...
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newly diagnosed with chronic pancreatitis
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Hi,
I am new to this site and new to the diagnosis; I have not had any alcohol since I was a teenager and am now 54 years old. I started having acute abdominal pain in December of 2007, and was misdiagnosed several times with esophageal spasms. Finally, in May 08 I had an ERCP which caused severe acute pancreatitis, and I ended-up in the hospital for over a week. I developed a pseudocyst as a result of this botched procedure. Then in July 08 I was back in the hospital with acute pancreatitis caused by gallstones. My gallbladder was removed at that time. Multiple hospitalizations ensued, each time because of an episode of acute pancreatitis, until finally in April 09 I had an ERCP sphincterotomy and received the diagnosis of chronic pancreatitis. Clearly the CP was a result of all of the trauma that my pancreas endured while I was being misdiagnosed. I was wondering if anyone else has gotten CP this way, and how they cope. I am an RN and can no longer work; am on SSDI...I feel so hopeless because there is no known cure or treatment for this disease. My pain is well controlled with oxycodone and neurontin; i have no appetite, and the enzymes did not work for me, so my doctor said to stop taking them. Thank you for any feedback, and I am SO grateful to have found this site! It's a lonely disease with few people who understand. Clo Posted on 10/08/09, 03:10 pm |
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Clo . . . I'm sorry for all you've been through. I have pancreas divisum and have experienced many acute bouts of pancreatitis and now have chronic pancreatitis from all the repeated ercps, stent placements, sphincterotomy, etc.
The stents and sphincterotomy did not help me and I continued to have bouts. Following discussion with renowned doctors who wanted to remove at least part of my pancreas, I have sought other treatment options and have found good success using clonidine. It is not fda approved for pancreatitis treatment, but if it works, who cares. It is researched thoroughly and included in medical textbooks now as proper treatment. It is an inexpensive drug and in order for it to be fda approved for pancreatitis treatment it would have to be marketed, researched even more, and double blind studies would have to be completed. It would be ridiculous to do double blind studies where pancreatitis treatment is considered, because it can be fatal. Here is a link that might be helpful for you: http://www.joplink.net/prev/200209... Let me know if you need the name of the research doctor I see. He has improved my life dramatically. I live in Missouri, but travel to Texas for my pancreatitis treatment from a cardiologist (also an internist). 
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Hi Mollie,
I too am so sorry to learn of all the suffering you have had to endure because of so much pancreatitis! Thank you for your reply and I will look into clonodine as a treatment...my doctors are willing to let me try just about anything that might work...I live in California and cannot travel, but I am fortunate that Dr. James Ostroff at UCSF medical center did my past 2 ERCPs and the sphincterotomy. He's known as "Dr. Pancreas" by many, and I highly recommend him. I feel so grateful to have made this connection with you; I don't actually know ANYONE who has chronic pancreatitis! And so few people have ever even heard of it...Thanks again for your reply...Clo
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Hi clo . . . I'm glad you have doctors that are open to trying things. I was not so fortunate. In fact, my local pcp now defers to my research. He's learned that I will travel if necessary to get proper treatment and I've had to be my own advocate. My pcp says I've taught him more about pancreatitis than he ever wanted to know.
I also have dysautonomia and since the pancreas functions on the autonomic nervous system I believe that contributes to my issues. Stress is a huge trigger for me and I have high norepinephrine levels. I'm mostly pain free now and just hope and pray that it continues. Various dysautonomia treatments have triggered pancreatitis attacks and I sort of have to sacrifice one condition for the other. I am able to work on a part time basis. I own and manage two income tax franchises, but have good employees and can manage to work from home a lot. I've had to force myself to train my employees effectively and not be as hands-on as I used to be. My doctor suggested applying for SSD, but I just can't do that at this time. I'm sorry you are no longer able to work and hope your situation will improve. Even though cp is not curable, with proper management it is manageable. It's nice to talk with you. I notice we're about the same age. The 50's hit me with a vengence!
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Hi Mollie,
I am SO glad that we have made a connection, and I had to read about "pancreas divisum" because I hadn't known much about it...yeah, the 50's hit me with a vengeance too!! i also have chronic fatigue syndrome (a very bad case of it) - this preceeded the CP, and so i went onto disability for that, when i was 51! then the episodes of acute pancreatitis started to happen, totally unrelated to the CFS...so it sounds like we have similar situations, because i also read about dysautonomia sounds very similar!! wow! what a coincidence...i was in a clinical trial for CFS at Stanford medical center in 2007; an antiviral called "valcyte", but it did not work for me... i look forward to continuing to hear from you whenever you are able...Clo
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I am currently a canidate for this surgery:
http://blog.al.com:80/spotnews/2009/05/university_of_alabama_at_birmi_9.html This may be the only cure. Also the enzymes did not work for me and caused pain -> My doc switched me to Creon they work perfectly!!!
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Hi Gbrenner,
Thanks for your note; actually, that's what I was taking (Pancrealipase, which is also called Creon); they're digestive enzymes, but they caused too much burning in my stomach, and didn't seem to decrease the post-prandial pain...but I am glad to know that they are working for you! gosh, finding something that works is such a gift...clo
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Is Pancrealipase the same? The capsule I take is time released minimicrospheres. It is a very small capsule. The first pill I was on was huge.
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as far as i know it's the same...
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Clo,
I am sorry that the enzymes did not work for you. It took me a couple differnt brands before I found one that worked. I think I am at the "burn out" phase and it seems things are getting a little better lately.
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Is the "burn-out" phase when your pancreas has sustained so much damage and calcification that you can no longer feel as much pain? how long did it take for you to get there? i'm glad to know that you are enduring less suffering because of it...
do you know much about life expectancy/prognosis with chronic pancreatitis? i have researched it on the internet but there are SO many different points of view etc. thanks...
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