Pancreatitis Support Group
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 chronic pancreatitis can present with persistent abdominal pain or steatorrhea, as well as severe nausea. Some patients with chronic pancreatitis often look very sick, while others don't appear to be...
I'm a male in my early 40s and looking for some clarity on insanity.
My history:
2004 upper abdominal pain radiating to back, diarrhea with generalized itching all over my body.
Local GI Dr determined gallbladder not pumping, so had it removed.
Symptoms stayed the same through middle of 2005. Took my symptoms to two major university hospitals in Chicago. No findings "remarkable" on months of scans, tests, capsule camera EUS. etc.
Basically lived with symptoms or got used to them, however itching did go away in fall of 2005. Gave up on getting answers from experts.
Fall of 2009 here it comes again. Upper abdominal pain radiating to back, under shoulder blades and itching all over returns. Symptoms progressed to include fatigue, dizziness and chest pain by June 2010, then admitted to local hospital. CTs, endoscopy and Colonoscopy showed nothing remarkable.
Took my ordeal straight back to one of the major university hospitals I saw in 2005. Further CTs, MRAs, MRIs, and tests. I have never had jaundice to this point, but the doctors have never related my itching to anything but idiopathic. My fecal tat test was abnormal, so had another EUS in October. No masses etc seen, so the doctors are stating a slight case of chronic pancreatitis. Nurse called my 5 days after EUS and stated they were putting me on pancreatic enzymes. I asked what caused the condition. She replied its idiopathic. I rarely ever drank alcohol, and have otherwise been fit my whole life except for this. I have a slight positive ANA in all the tests done over the years, but have been ruled out for lupus or anything like that. No explanation on the itching just live with it. I've been dealing with the pain by basically eating small low fat meals and taking the enzymes. My weight has stabilized and I have only lost 15 pounds over the last 7 months. Diarrhea is gone I assume because of the enzymes. When I itch my skin is now feeling like it is on fire. This has been going on for months now. My new symptom this week is an awful taste in my mouth.
Basically looking for and found this support group, since I've again lost faith in real answers to anything. just wondering if anybody has insight into a proactive doctor on chronic pancreatitis in the midwest, who can hopefully determine what caused this and a treatment plan going forward. I'll refrain from slandering my doctors at this point. All dietary changes I have made are simply myself looking on the web etc. I have a "diagnosis", but no doctor is providing me a treatment plan. I'm looking for a better second opinion on this. I can deal with the life change and pain if I understand what some of you are going through is well beyond me as of now. I am having trouble dealing with the itching and burning skin feeling.
Puzzled, confused, looking for answers and glad to find this group. Take care. .
My history:
2004 upper abdominal pain radiating to back, diarrhea with generalized itching all over my body.
Local GI Dr determined gallbladder not pumping, so had it removed.
Symptoms stayed the same through middle of 2005. Took my symptoms to two major university hospitals in Chicago. No findings "remarkable" on months of scans, tests, capsule camera EUS. etc.
Basically lived with symptoms or got used to them, however itching did go away in fall of 2005. Gave up on getting answers from experts.
Fall of 2009 here it comes again. Upper abdominal pain radiating to back, under shoulder blades and itching all over returns. Symptoms progressed to include fatigue, dizziness and chest pain by June 2010, then admitted to local hospital. CTs, endoscopy and Colonoscopy showed nothing remarkable.
Took my ordeal straight back to one of the major university hospitals I saw in 2005. Further CTs, MRAs, MRIs, and tests. I have never had jaundice to this point, but the doctors have never related my itching to anything but idiopathic. My fecal tat test was abnormal, so had another EUS in October. No masses etc seen, so the doctors are stating a slight case of chronic pancreatitis. Nurse called my 5 days after EUS and stated they were putting me on pancreatic enzymes. I asked what caused the condition. She replied its idiopathic. I rarely ever drank alcohol, and have otherwise been fit my whole life except for this. I have a slight positive ANA in all the tests done over the years, but have been ruled out for lupus or anything like that. No explanation on the itching just live with it. I've been dealing with the pain by basically eating small low fat meals and taking the enzymes. My weight has stabilized and I have only lost 15 pounds over the last 7 months. Diarrhea is gone I assume because of the enzymes. When I itch my skin is now feeling like it is on fire. This has been going on for months now. My new symptom this week is an awful taste in my mouth.
Basically looking for and found this support group, since I've again lost faith in real answers to anything. just wondering if anybody has insight into a proactive doctor on chronic pancreatitis in the midwest, who can hopefully determine what caused this and a treatment plan going forward. I'll refrain from slandering my doctors at this point. All dietary changes I have made are simply myself looking on the web etc. I have a "diagnosis", but no doctor is providing me a treatment plan. I'm looking for a better second opinion on this. I can deal with the life change and pain if I understand what some of you are going through is well beyond me as of now. I am having trouble dealing with the itching and burning skin feeling.
Puzzled, confused, looking for answers and glad to find this group. Take care. .
There's a good doctor in Indiana who deals with this. His name is Dr. Lehman. You can google his name along with pancreatitis and you'll see a lot of hits. I too have gone all over the place in search of a diagnoses. I had some things show up on my last EUS that might be mild chronic pancreatitis. It's very frustrating.
With your positive ANA I wonder if it would be worth it to try a round of steroids. If its autoimmune pancreatitis, I believe it usually responds well to steroids.
There's another doctor in MN who I saw. His name is Dr. Martin Freeman. He advised that I have my gallbladder removed and see how I manage after that. I haven't been back to see him yet. Here's his info:
http://www.med.umn.edu/gi/faculty/hcmc/freeman/home.html
Sue I also have enlarged lymph nodes - mine are around my common bile duct and liver. I have had 2 endoscopies, the 2nd showed it had calmed down but my pain continues. I seen the pancreas specialist today who is going to do another CT scan and if not shows no change in lymph nodes he's going to do a laparoscopy to remove some to analyse. It is worrying having enlarged lymph nodes. I also wonder if I have some kind of infection going on - I had my appendix removed this time last year (gone gangerous) and have had problems ever since - gallbladder removed in July and been in pain ever since with elevated amylase levels.
Best of luck