I had pancreatitis and gallbladder problems back in July. At the time I actually had acute pancreatitis. I did not have a fever, but my Amylase and Lipase levels were at 678 and 1098, respectively.
I just had another six day stay in the hospital (2 months post gallbladder surgery) - a doctor (Gastro) told me I didn't have chronic pancreatitis because I didn't have high cholesterol and/or I didn't abuse alcohol. He also said my enzymes would have elevated which they were not. This Gastro was not my Gastro (someone in my Gastro's practice) - but I intend to follow up on it with my doctor seeing how the pain still has not gone away after six days in the hospital on morphine and all test results were "normal" or "okay".
It is quite possible to have pancreatitis and not have a fever. Loose, mucous stools are also a common problem with chronic pancreatitis.
I have had acute pancreatitis and now have chronic pancreatitis. Often during an attack I don't have a fever, NOR do I have elevated enzymes. 5fan, I advise you to talk to your regular Gastro, because the one that saw you doesn't seem to know that most of us with more advanced CP DO NOT have elevated amylase and lipase levels anymore during an attack. By the way, I also have LOW cholesterol. Since I do not have any of the "signs" these doctors treating you say one must have as definitive signs of pancreatitis, I wish that meant that I didn't, but I most assuredly do. Oysia, my pain is on the left (tail of pancreas) under the ribcage, and it radiates to the back. I have never been diagnosed with IBS, I was fortunate to find a good, experienced Gastroenterologist who knew exactly how to listen to my complaints, analyze my symptoms, and what to test for to reach a conclusive diagnosis. Keep searching for a specialist of the same caliber.
Glad to hear from you again.
I actually got some info from another person who posts on this site about Shands in Gainesville, FL. I actually live in Central Florida and if I don't get some relief soon I will be headed there.
Things just seem to be getting very frustrating. I don't know how anyone can live with this pain for any number of years. It has worn me out and I have only been dealing with it since April (when I had my first attack).
Maybe once I actually get a diagnosis I'll get a little relief, even if its only mental. My family all lives in Maine and New Brunswick, Canada - so for the most part, other than a few friends - I've been going through this maze all by myself.
Thanks again for all your help.
Spike's suggestion of Shands is an excellent one. The hospital is very well known in the pancreatitis world and I know of many CP patients who have gone there and had excellent treatment. Sounds like he knows a really compassionate and experienced physician that could help you, too. This is advice you should follow up on.
Once you find yourself a good physician you will be able to get some control over your pain. I know of people who have had CP for over 30 years and they are still hanging in strong. The key is getting the proper care. I'm fortunate with my GI in that he knows what he's doing and has me on treatment appropriate for my condition. My pain is in control and so far doesn't interfere too much with going on with life. I've had to make many lifestyle and eating adjustments to accommodate living with a chronic illness, but it's so far been manageable and I have confidence in my doctor and my care. I also belong to an online pancreatitis support group that has acted as friends and family and been the source of so much good information and support that I do not feel alone. You might be interested in joining such a group, for your sanity, if nothing else. It helps to have someone to talk to that has been in your shoes at some point of their travels, someone that understands and can offer hope and help. Feel free to email me if you want that information.
Spike1951, from all appearances you are a considerate and loving husband.... it is so warming to see a man who is obviously concerned and consciencous for his wife's care. She is fortunate to have such an attentive caregiver. It will mean a lot to her to have someone as dedicated as you are to help her through this disease.
Can you please e-mail me the doctor in Lake County? I've tried looking the practice up on the internet but am not having much luck. I want to make sure I get the correct one.
I would also love it if you could e-mail the support group address.
I swear - "all this" makes my brain fuzzy at times. I should have been able to clear this up with one e-mail. I think the Librax really messes with me at times!!!!!!!!!!!!
I'll place this here because you will be more likely to see it and if I remember will post in the other thread as well.
The best in the orlando area are not where to be. They may see some cases but SHANDS see hundreds & hundreds over years and years, and see the worst of the worst. We would not let a GI doctor here touch my wife for any Chronic Pancreatitis issues. Unfortunately, it may take months to get to see a doctor at SHANDS because they get the worst around Central, north, etc florida. Call Monday and get an appointment, ask about being notified if a cancellation turns up. It may take months but keep that appointment. The number is 1-800-749-7424, as for GI or DP1 which is where the GI doctors see patients.
THEN the only doctor in this area who has any compassion for the pain and suffering which may, I hate to be the one to say, go on for years. As I said my wife has suffered for 4 years with no end in sight. That is why a compassionate family doctor is a MUST. I want to avoid name, etc on this public of a forum, so I will be a little vague here. If you don't figure it out leave me feedback and I try more hints.
The most wonderful compassionate doctor, an internalist, better than a regular MD, a lady who 4 years ago agreed to take my wife as a patient knowing how difficult her case could be and has NEVER broke that committment to us over these 4 years. She has learn a lot about Chronic Pancreatits from treating my wife and another gentleman patient she has. She use to work out of longwood but moved to Tavares. We without a moment's hesitation drive 45 minutes to her office. The office is Lake Primary care. Ask for an appointment with the interalist there. When you see her, tell her you were referred by the husband of the lady she treats with very severe Chronic Pancreatitis. She'll know who that is.
PS just read you posts, if you can wait, I wouldn't let the doctors her do an ERCP, That should be done a shands, they will find thing that local doctors may miss. Yes you have to have on to see if the Pancreatic ducts are narrowed or blocked, my wife's were normal, thuse the idiopathic CP, not known reason, etc.
I will try to get this post deleted once you reply that you saw it, hesitant to give details on specific doctors. Copy the info when you read it and then let me know.
If it continues as severe chronic pancreatitis you'll need family or a special friends support. it's all I can do to take care of my wife and child, with my wife as sick as she has become.
Make that call Monday, call and get an appointment with the internalist if that is not too far, or not on your insurance plan. We went to her even when she was out of network and it cost us more.
leave me a post back
One last note, (keep telling you how bad CP is but...) the Dr. C that diagnosed my wife died two years ago. he had a rare blood disorder at about 60 years old and knew he only had a few years left at most but looked my wife in the eye and said that he would rather have what he has than CP.
but remember the good news is there are a very few compasionate doctors who can help you through this. Also get ready to apply for Social security disability, it takes several appeals for CP, so get started as soon as you can not work. Start keeping medical records now on what all you have been through, the cat scans, hida-scans, x-rays, hospital stays, by the way my wife had all those too.
Thanks for all your help. Traveling to see a doctor is no big deal for me. I grew up in such a rural area up north that the closest "major" hospitals were 3 or 3 1/2 hours away. Our definition of "major" does not fit a major city's definition of major - the closest of those would be Boston (and I've known a lot of people taken there with "serious" health issues" that local hospitals in Orlando could/would handle on a daily basis).
I'll start following up on Monday with trying to get an appointment at Shands. Best case scenario is I make one, end up not needing it and can cancel.
I am lucky I have good health insurance (expensive, but what health insurance isn't these days). At least I don't have to have a primary care physician refer me to anyone - I can call and make my own appointment with whatever doctor I want to see!!!!
Your wife is lucky to have someone like you in her life. I know it's not easy for caregivers either - you have a lot to deal with on your own!
I want to thank you for all your advice and listening. Like you said sometimes you just do feel alone when no one around you has suffered from the same thing. They don't understand when it starts to consume your life - what else can it do when it affects every thing about you (you don't feel well enough to even do the dishes, let alone clean the house, do the laudry or have any type of social life). I have made some lifestyle changes (I used to work 3 jobs and am now down to 1); have made dietary changes (that's why I got so frustrated with gaining weight). I have given up my all time favorites: pasta with red sauce and coffee. At one point in time I thought I'd die without them. Now I think jut the opposite - I think I'll die when I consume them (the coffee I learned the hard way - the red sauce I didn't even try after my surgery and pancreatitis). I beginning to think that pot roast and roast beef are going to be next on my list. The last few times I've even tried them I've been severely ill. The odd thing about that is the last meal I had in the hospital before they discharged me this last time was pot roast. One condition of my being discharged was that I had to keep it down and boy was that a challenge. I plan on asking my GI about a more specific diet when I see him next week.
Again - THANKS FOR EVERYTHING!!!!
Thank you for your comments about me as a husband/caregiver. That was nice to say. In reality, when I married my wife we became one. It's not her disease, it just happens to be in her body. Her beautiful spirit, just has to live in a diseased body for now, it won't always be that way. This disease is ours, not hers, it's in our "one" body. It is all she can do just to get through a day, or sometimes an hour. I have the healthy part of our body and try to take care of everything else, doctor's appt., prescriptions, getting the few things left that she can eat, etc. She is amazing, she is hardly ever cross, even though she had been in pain 24x7 and felt terrible for years, and when she is able to get out a few hours, there is only one person she goes out with, our only daughter who needs her mom! She has sacrificed friends, hobbies, everything to make our daughter number one. We figure our character & morals are set, but our 11 year old will be tremendously influenced by her time with her mother, as she is still developing into a young teen, then young adult. Their time is precious! Illness can tear you apart or make you stronger depending on your committment level! It has made us stronger and more in love.
Back to CP, thought I read something about weight gain. Another falicy about CP that everybody looses weight. The late Dr. C told us that is not always the case. My wife at first gained 40 lbs because she suddenly became almost totally inactive. Then for no reason lost 40 lbs in about 6 months later. CP has common symptoms but also varied ones. Doctors who only know a little about it, can't diagnose the complex cases because they only look for the common symptoms.
Enjoy the roast beef, red meat will soon be one of the things you probably will not be able to eat. When they do an ERCP, or maybe the secretion test, they give you something that makes you think you just at a steak to stimulate the pancreas which is the last thing you usually want once CP really kicks in.
Hope your case is not as severe and you get some relief,
Anybody know of a good gastro Dr. in upstate New York?? I live in the Orange/Sullivan/Ulster county area?? Thanx...georgie439
I am new to this website and have just been diagnosed with chronic pancreatitis. I have had pain since last Feb. when they found gallstones. The pain was on the left side. I asked about that but they just said it was referred pain. The pain would be off and on so I didn't pay too much attention to it. I was already on a low (almost non) fat diet because of triple by-pass surgery 4 years ago. I have lost 12 pounds over the last two weeks. My doc did a CT scan which showed nothing. I have been on 24 hour fasts, clear liquids and tried a bland diet. Nothing works to get rid of the pain. She put me on Pancrease enzyme tablets which helped but I started getting more pain radiating to the back from under the left rib cage and all across the back. Also a burning sensation across the front of the stomach. I go for a MRI tomorrow morning and see a local specialist that I pretty much have confidence in next Tuesday. Will I be able to eat again? I am getting hungry. I guess I didn't have Acute Pancreatitis but Chronic. I am just learning about it and it is very confusing to me. I am wondering if this is terminal. How do you know what to eat? I am very good on my eating habits like I said because of the Heart disease. Sorry about the length but do you have any suggestions for me or ideas on what to do next? Thanks, Gary