aI'm posting this under general gastroenterology instead of Pancreatitis because I don't want something to get missed because of a myopic approach. In 1994, when I was 34 yrs old, I was diagnosed at Duke University Med. with pancreatitis. Pancreatitic and liver enzymes were all above 3000's. Since then I have fought chronic pancreatitis on an almost daily basis. It was considered unknown causes. I don't smoke or drink alcohol or take illicit drugs. The only illness I had prior to that was endometriosis, and I had undergone a complete hysterectomy at the age of 22 because of that. My episodes generally had required hospitilization where I would remain for 4-6 weeks at a time. I've had over 100 ERCP's. I've had numerous stints placed in the liver duct (bile duct?) with sphencterotomies being done every 2 years or so. In 2005 I had another sphencterotomy and sludge drained from my liver duct. After that I improved tremendously for about 2 1/2 years. In Oct 2007 I was admitted to the hospital for a pancreatic flare. I was in this small "country" hospital for about 1 week. I had moved to a very rural area due to getting married and it is very difficult to make it back to the hospital that I have used for years, and my long term gastroenterologist has left her practice, this all basically leaving me without adequate care. I've continued with my pain specialist who I have seen for over 10 years. The attacks in the past two years though, except the 2007 hospital admission. I've tried to manage on my own. In 2007, following the hospital admission, I saw a new-to-me gastroenterologist who stated that I should consider having my pancreas removed, and that I'm a great risk for pancreatitic cancer. He also stated that the MRI suggested that the ducts at the bottom of the pancreas that are supposed to divide at birth and create a large duct may not have done so. However, after he learned that Ihad been treated early on by a particular specialist at Duke Med. then he stated that if that highly esteemed doctor didn't think this was the problem then it probably wasn't! I guess the truth is that he scared me with the talk of removing my pancreas and frustrated me with his own sense of inadequacy in diagnosing something previously perhaps overlooked by a world renown specialist! I didn't go back to him. I've had several major episodes that I've managed at home with clear liquid diet, rest and pain meds. I also have a morphine pump implant which is set on 3 mgs per 24 hours.
Yesterday, following a two week period of upper abodominal and back pain consistent with the pancreatitic symptoms I've always experienced, after trying to manage at home with a reduced intake diet of mainly liquids, I broke down and called the gastroenterologist office. He was out so I was told to go to the local ER. I went and the ER dr. (I had been here one other time and saw this same er doc who had sent me home telling me "I was not sick enough") saw me. Here are my lab results (I'm only including the ones that were not normal or were at the H or L of norm:
Creatinine L-0.5 (norm L..7- 1.30H), CO2--29 (norm: L-22 H-29), ALP 117-H (NORM=L-35 H-104), AST H-46(NORM=L-0 H-31),ALT H-48 (NORM=L-0 H-31), RBC 5.04H (NORM= L-3.75 H-4.95), HGB H15.4 (NORM= L11.60 H-14.40), HCTH44.1 (NORM=L-33. H-41.50) Amylase was within the normal range according to their test standards. They did not do Lipase test, or did not report the results.
I am so tired of doctors thinking that because I have a disease that is treated with pain meds that I must be drug seeking. I've deliberately had my morphine pump reduced to it's lowest point because I do not like having narcotics in my body. I've had a prescription bottle full of Oxycontin in my bathroom for the past 4 years that my pain specialist gave to me back in 2004--the same pills the same bottle. I fight going to the hospital because I prefer to fight this with more healthy alternatives, such as trying to stay focused on something other than the pain. However, there comes a time when even the best have to concede the battle!
My concern is that I'm having extreme upper abdominal pain, front and back. It hurts to bend over because of the pain it causes in the upper abdominal left area. And, my HGB, Hematocrit and RBC are all elevated as well as my liver enzymes. If it is not pancreatitis, then I just want to know what's causing this insane pain! I'm sorry for the long post and hope that I haven't broken any of your protocols on posting.
The only other thing that I can add at this moment is that I've had my gall bladder removed. I had tested pos. for h-pylori at one time, with polyps in my stomach and some other findings in my stomach. This has been about 12 years ago.
Hi. Not to my knowledge. I had never heard of autoimmune pancreatitis until I read some of the posts on this board. My frustration is this: I know that I have seen the best gastro. doctor for pancreatitis. I was greatful for that. However, since 1994 when I saw him, every doctor now that sees me just says, "Oh, you saw Dr. --- so there's nothing more we can do but maintain you." This is very frustrating since I know that there have had to be improvements and gains in the area of pancreatitis in the past 14 years! I just want to have the same chances that someone who has just been diagnosed with pancreatitis has now. I've been under maintainance medical care for the last 12 years, just treating the pain. I will investigate the autoimmune pancreatitis. I have an appointment on Jan 15th with a PA from the Dr's office I mentioned above. Hopefully there will be something more from them besides taking out my pancreas.
well,i dont know what there getting ,you cannot simply have your pancreas removed,,,and there is no such thing as a pancreas transplant.
you have to have one to live,onless you undergo that RARE,,very rare procedure where they.over time introduce your liver to healthy pancreas enzyme injections in a certain area...then if all works out,the pancreas can be removed,and the liver will have the area there work kinda like a internal pancreas..but you will be a diabetec,and you will need enzymes to digest food,but you will be alive!!!
pancreatitis is a progressive thing,and has a very high mortality rate.
they are right though,,,pain managment is key in living a comfortable life,,id not worry about the narcotic part of it,,id rather live comfortable then live miserable with a disease you cannot cure,you understand?
again,i dont understand what they told you but they cannot remove it,you need it!,,good or bad,unless they do that procedure,and only a few doc in the country can do it from what i understand.
Yes, they do perform pancreatectomies. In 1998, before the doctors could implant the morphine pump (back then, they only put these pumps in patients with pancreatic cancer and there was a big control protocol on who got them and how) I had to have several surgeons who said this was the last resort before the pancreatectomy. The surgeons told me that if they did a pancreatectomy there was about a 5% survival rate for 5 years. I understand that is still about the same survival odds. With this surgery one immediately begins a brittle diabetic and also one has to be on continual pancreatic enzymes. If I would have had it back at that time, I would have already been dead for at least 5-10 years. I've learned not to let Drs take anything out that they can't put back, if you can't live or perform without it!
I don't know if I mentioned it above but I also have hypothyroidism and am on 100 mcg of Levothyroxizine. I believe that hormones trigger my pancreatitis, and I was on hormone replacement therapy. I quit taking those. Then I realized that milk seemed to trigger it. However, I learned that Organic milk that doesn't contain hormones doesn't seem to trigger it. Lately, I've been drinking non-organic milk because I couldn't get the organic. I think that this is what has triggered it perhaps again.
My big concern is that I have these high HGB, RBC and Hematocrit and liver enzymes now. Does anyone know what might cause this?
Also, because of the defects in my pancreas I'm not a candidate for the Whipple procedure.
my husband goes to charlotesville,va hospital. the dr there is kahlah. spelling? he saved my husnad life. he is french.he has chronic pancreatis also. we have to watch what he eats. no fats. although he is malnutrished. he is alove. he still drinks smoes but dosent eat. he dosnt cre about his life anymore. he is only 46. one day he will be gone. i tell my kids about not drinking. becaue tis will happen to you.
I'm sorry to hear about your husband. I do not drink and do not smoke, and I still have very bad pancreatitis. I've lived with it for 14-15 years and fight it every day. If your husband drinks and smokes he is hurting himself. I hope that you and your children are getting support from someone. I also hope you have life insurance on your husband! He is killing himself with drinking if he has pancreatitis! You should at least have life insurance so that you and your children will have an income when he is gone, so that you can take care of you and your kids! It is very selfish for someone with pancreatitis and a family to continue to drink. I don't mean to be judgemental, but you need to be encouraged to take care of yourself even if he is not taking care of his ownself.
well,like she said,if the survival rate is 5% for 5 years,id say you cant live without it!!...
i have seen where they transplant healthy pancreas cells into your liver,and then remove the pancreas,this part of the liver now acts like the pancreas!!!!
i seen it on a program,and the guy was doing fine,diabetec,but fine.
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