Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 I have never posted before but here goes. I was diag. with chronic CP in June 2002 by a gastro. dr and an internal med. doc that did his residency at 's Hopkins panc. research unit. My lipase and amalase are almost always high, I had an ERCP in Aug of 2002 and the gastro said my bile ducts are too narrow to dialate. No relief just days in the hospital because of the pain and vomiting. I've had the fecal fat test done and it was high, I lost 20 lbs. but then all of a sudden I stopped losing and am gaining weight. My stomach looks like I am 9 months pregnant with triplets. My blood sugar is off the charts one minute then down to nothing the next. I am in so much pain I can't stand up sometimes. Yet when I call the Dr. he makes me feel like he doesn't care, or that I am looking for stronger drugs, he just says hang in there and that's it. I take Norco for the pain and that is it. IT doesn't help much at all. I am up all night from the pain. Well I saw the dr. today and he refered me to an other gastro. that gives sandostatin injections. New dr doesn't think I have CP. He wants to do endoscope and colonoscopy and an other CT scan. My last CT scan showed a 2 cm mass on my liver and the new dr says I just have fatty liver disease. Does this sound right? How can I have 2 dr's tell me I have CP and then the third says no it's fatty liver. I don't want to do these other test. I am terrified of the hospital and I am afraid I will end up back in there again after these test. Also my CT scan shows Fibriods in my uterues and new gastro dr says that it is bad to get sandostatin with fibriods, because it will you bleed more. Has anyone ever heard of this? Also I just found out 5 yr. old son is a diabetic. What are his chances of getting CP? Alcohol is not the cause of my CP (or my non-CP, per new dr.) Any advice and answers would be greatly appreciated. Simi Valley, CA chambersl@... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 You need to find a caring doctor. You are wasting your time with this fellow, since he will not prescribe adequate pain relief for this disease. Lots of us had to go through this, that is, having an uncaring physician. But it is up to you to find someone who will treat your pain. My suggestion is to start making appointments with other doctors until you find one who will help you. Good Luck, Jerry/NC ******************************************************** Do Doctors really know? > Yet when I call the Dr. he makes > me feel like he doesn't care, or that I am looking for stronger > drugs, he just says hang in there and that's it. I take Norco for > the pain and that is it. IT doesn't help much at all. I am up all > night from the pain. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Dear , All of the problems you have had so far, which I will state again: high amylase and lipase levels, a positive fecal fat test and a narrowed bile duct, are problems related to pancreatitis. I'm not a doctor and don't know all the symptoms of fatty liver, but I think you need to find another gastroenterologist who is more experienced in pancreas care and continue to address that problem, and get some relief for the pain. I don't personally know enough information about sandostatin injections to comment on them. I have heard of a few CP patients who have had them, but as you know, each patient's history and problems are different and what may be good for one isn't necessarily the right treatment for another. Are you diabetic? You mentioned that your sugars had been all over the place. Do you see an Endocrinologist for treatment of this? I hope you can find yet another doctor who will investigate these problems thoroughly and get you headed in the right direction for necessary and appropriate medical treatment. With hope and prayers, Heidi Heidi H. Griffeth South Carolina SC & SE Regional Rep. PAI, Intl. Note: All comments and advice are personal opinion only, and should not be substituted for professional medical consultation. " What lies behind us and what lies before us are tiny matters compared to what lies within us. " - Ralph Waldo Emerson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Dear , All of the problems you have had so far, which I will state again: high amylase and lipase levels, a positive fecal fat test and a narrowed bile duct, are problems related to pancreatitis. I'm not a doctor and don't know all the symptoms of fatty liver, but I think you need to find another gastroenterologist who is more experienced in pancreas care and continue to address that problem, and get some relief for the pain. I don't personally know enough information about sandostatin injections to comment on them. I have heard of a few CP patients who have had them, but as you know, each patient's history and problems are different and what may be good for one isn't necessarily the right treatment for another. Are you diabetic? You mentioned that your sugars had been all over the place. Do you see an Endocrinologist for treatment of this? I hope you can find yet another doctor who will investigate these problems thoroughly and get you headed in the right direction for necessary and appropriate medical treatment. With hope and prayers, Heidi Heidi H. Griffeth South Carolina SC & SE Regional Rep. PAI, Intl. Note: All comments and advice are personal opinion only, and should not be substituted for professional medical consultation. " What lies behind us and what lies before us are tiny matters compared to what lies within us. " - Ralph Waldo Emerson Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Thank you for your response. Yes I am diabetic. I never had problems with my blood sugar before I was diagnosed with CP. Also on the days that it feels like someone is reaching inside me and squeezing my pancrease my blood suger goes way up. I think that this is related to the CP. Please don't get me wrong, I don't want for the dr's to give me more drugs since I won't take anything until I finish picking my kids from school ( I won't drive and take my pain meds) but like yesterday when I was doubling up on pain meds for some relief I wish I had something stronger so I could rest. Sometimes the pain gets so bad I start to hyperventilate. Also does anyone else notice that when you are stressed your symptoms get worse? Praying for relief for us all, > > > Date: 2003/09/22 Mon PM 08:43:16 PDT > To: pancreatitis > Subject: Re: Do Doctors really know? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 22, 2003 Report Share Posted September 22, 2003 Thank you for your response. Yes I am diabetic. I never had problems with my blood sugar before I was diagnosed with CP. Also on the days that it feels like someone is reaching inside me and squeezing my pancrease my blood suger goes way up. I think that this is related to the CP. Please don't get me wrong, I don't want for the dr's to give me more drugs since I won't take anything until I finish picking my kids from school ( I won't drive and take my pain meds) but like yesterday when I was doubling up on pain meds for some relief I wish I had something stronger so I could rest. Sometimes the pain gets so bad I start to hyperventilate. Also does anyone else notice that when you are stressed your symptoms get worse? Praying for relief for us all, > > > Date: 2003/09/22 Mon PM 08:43:16 PDT > To: pancreatitis > Subject: Re: Do Doctors really know? > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 , this is just my opinion, but I'd believe the other two doctors. Basically, 2 to 1. Go back to the other two doctor and ask them for another referral to a pancreatic specialist. You are entitled to as many different opinions as you want. I would have the mass on your liver checked out though. Better safe then sorry. As for the problem with the fibroids, I haven't a clue. Check out what http://www.rxlist.com has to say about the sandostatin. It's possible your son may have CP, but it would depend upon if it's hereditary, idiopathic or a birth defect such as a pancreatic divisum, which can also be passed on to children. That would be something I'd bring up with your doctor. -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 , yes, Stress also makes my pain and other symptoms worse. No one here likes to take the pain meds, but the pain is just too much to handle with out them on a long-term basis. You might want to see if your doctor (one of the ones who told you you have pancreatitis) would refer you to a pain clinic or pain specialist. Just one word of warning if you do go to a pain clinic, make sure that they prescribe pain medications as not all pain clinics do. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 , yes, Stress also makes my pain and other symptoms worse. No one here likes to take the pain meds, but the pain is just too much to handle with out them on a long-term basis. You might want to see if your doctor (one of the ones who told you you have pancreatitis) would refer you to a pain clinic or pain specialist. Just one word of warning if you do go to a pain clinic, make sure that they prescribe pain medications as not all pain clinics do. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Hi Kimber, You sent 2 e-mails to me by mistake, so I thought I would let you know. Take care Vicky Re: Do Doctors really know? , this is just my opinion, but I'd believe the other two doctors. Basically, 2 to 1. Go back to the other two doctor and ask them for another referral to a pancreatic specialist. You are entitled to as many different opinions as you want. I would have the mass on your liver checked out though. Better safe then sorry. As for the problem with the fibroids, I haven't a clue. Check out what http://www.rxlist.com has to say about the sandostatin. It's possible your son may have CP, but it would depend upon if it's hereditary, idiopathic or a birth defect such as a pancreatic divisum, which can also be passed on to children. That would be something I'd bring up with your doctor. -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 23, 2003 Report Share Posted September 23, 2003 Hi Kimber, You sent 2 e-mails to me by mistake, so I thought I would let you know. Take care Vicky Re: Do Doctors really know? , this is just my opinion, but I'd believe the other two doctors. Basically, 2 to 1. Go back to the other two doctor and ask them for another referral to a pancreatic specialist. You are entitled to as many different opinions as you want. I would have the mass on your liver checked out though. Better safe then sorry. As for the problem with the fibroids, I haven't a clue. Check out what http://www.rxlist.com has to say about the sandostatin. It's possible your son may have CP, but it would depend upon if it's hereditary, idiopathic or a birth defect such as a pancreatic divisum, which can also be passed on to children. That would be something I'd bring up with your doctor. -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Vicky, actually, I sent those emails to the pancreatitis support group for a specific person, but you must have your options set to individual emails, that's why it seemed that you got the emails from me. They were not private emails. The best way to tell if they are private emails, or emails sent to the pancreatitis support board is to check the Reply TO address. If it says Reply to: pancreatitis , then it's for the support board, like this email is. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Vicky, actually, I sent those emails to the pancreatitis support group for a specific person, but you must have your options set to individual emails, that's why it seemed that you got the emails from me. They were not private emails. The best way to tell if they are private emails, or emails sent to the pancreatitis support board is to check the Reply TO address. If it says Reply to: pancreatitis , then it's for the support board, like this email is. Kimber -- Kimber Vallejo, CA hominid2@... Note: All advice given is personal opinion, not equal to that of a licensed physician or health care professional. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 24, 2003 Report Share Posted September 24, 2003 Hi , I have CP also. I don't have the pain that you describe but I do work at an Oncology Clinic and deal with alot of cancer patients. I know that if you are on pain medication you need to take it on a regular basis instead of waiting until it is so bad you can't stand it. Have you ever considered a pain clinic? I hope this is helpful. take care Patty Jensen Louisville, KY Quote Link to comment Share on other sites More sharing options...
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