Posted , 61 users are following.
My doctor thinks I may have chronic pancreatitis and is sending me for an ultrasound scan. Please can you describe your symptoms and pain please. From reading online the pain is horrendous, my pain is mild to moderate but constant with no rest from it. It is worse with walking etc and slightly better when resting.
Thanks
0 likes, 92 replies
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elelz mark75690
Posted
I am currently being worked up for CP. I have had an ultrasound which was "suboptimal" and a CT with contrast which was normal.
I have had worsening pain for four years. Now it is almost constant but moderate. I have occassional mild nausea after I eat and a little stomach pain, but the constant pain I have is just under my right breast extending around my right side just below my armpit. Then I have frequent, but not constant, back pain between and just below my shoulder blades. I have had the loose stools which are sometimes very golden in color. I've been checked for fat in the stool - negative. Gall bladder normal. My pain also is more noticeable when I'm up, and better when I'm resting. It doesn't go away anymore like it used to.
I drink wine 3-4 times a week, maybe 2 glasses. I've stopped for weeks at a time and it made no difference.
This is very frustrating.
mark75690 elelz
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trish38337 mark75690
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mr08096 trish38337
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Hi Trish. Did your doctor considered H.Pylori infection? The most accurate is stool PCR analysis like this you know if you currently have an active infection and the exact amount and which virulence factor. Also some types of H.Pylori might have some influence on pancreas function https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4231501/ . It might be worth investigating if it ever comes back !
mark75690
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tammie68224 mark75690
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The longer you have problems with your pancreas, the higher chance that your enzyme levels will be at a normal level when checked by blood test. Even during a severe attack that should land you in the hospital. Not sure why.
thomas11770 mark75690
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Your story sounds very similar to mine . My pain is a constant 2/10 but when i work a very physical job it shoots up to a 7 and wipes me out the rest of the day . My initial lipase was 2.5 x the upper limit but is now within normal range . Ct was clear of any abnormalities and Bloodwork is great. But the pain persists. I believe i have CP because these symptoms have been around for years but my doctors insisted it was gastritis , gerd , costochondritis until 2 years later they checked pancreatic function. stay on your doctors because pancreatic issues are hard to diagnose and sometimes its not until its too late. I still domt have a clear diagnosis ✔
leigh74005 mark75690
Posted
My story so far
Symptoms started around 10th may this was after a couple of bottles of beer when sitting in garden. They were only on the right side. Around my ribs and slightly wrapping around into the back occasionally. Around 29th may, the pains had mostly settled down. I had a bbq and a few beers on this day. Pains ramped back up a day or so later. It stayed this way upto approx 10th June when the pains started to move to the centre. A couple of days later, I noticed that the pains moved into the upper right back and to the left upper abdomen. The left abdomen pains are very mild and persistent. For the past 3 weeks, the pains have been in the left mid to upper side of back. Feels like I've pulled a muscle. The back gains go if I lie down. I've had an ultrasound in May that showed nothing but slight fatty liver. They could not see my pancreas on ultrasound so I was sent for a ct scan with contrast. (Dual phase ct). This showed nothing wrong with pancreas. Has blood test to check amylase levels. This was normal also. All my bloods have come back normal except slightly elevated ALT level.
I have an appointment next wed at hospital where I get some more blood results back. Mainly focusing on my liver though. This will be the first time o have seen this team in the hospital so I have not had a chance to mention my concerns to them. I have seen a gastro at a private hospital. Told him my symptoms and my fears. He is confident that I have ibs given that all scans were normal enough. He asked my to get a faecal calprotectin test done and if it came back high, he would do scopes. This came back entirely normal. Not had far all elastase test done yet. Will bring this up at the hospital appointment.
Do any of you guys feel weak. Almost like you don't get enough energy from your food? I can eat a meal, then Shortly after, I am hungry again. I bought a diabetes tester to check my blood sugar levels and present them to the hospital when I go. According to the tester, are all normal.
I'll keep you updated.
mark75690 leigh74005
Posted
I have no energy levels, Im drained and struggle with the basics like walking, shopping, house work, walking the dog etc. My liver GGT was raised after my last blood test but GP said he was not concerned because I have a fatty liver and this will cause raised GGT
rick71536 leigh74005
Posted
I have had the Whipple procedure, a 10 hour surgeryto. Remove the head of the pancrease, my blood sugar has always been normal and I only have half a pancrease. You have got to stay away from alcohol, 1 beer can send you to the hospital for a week in severe pain.......its the truth, happened to me several times
if you have any questions let me know
Rick
tammie68224 mark75690
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Does your pain get worse when laying dow? That's a sign that it's pancreatitis. Do you hhurt more after eating foods high in fat or any kind of red meat?
lotus15549 rick71536
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Hi Rick. I hope you are managing? I was wondering how were you diagnosed with CO? WHAT TESTS DID YOUR DOCTOR'S PERFORM?. I AM TERRIFIED THAT I HAVE THIS DISEASE. I HAVE CONSTANT STOMACH PAIN. I HAVE HAD NUMEROUS CAT SCANS AND ULTRASOUNDS THAT SHOW NORMAL. FOR THREE YEARS DOCTORS TREATING ME WITH PPI. IN NOVEMBER I HAD AN ATTACK AND HAVE BEEN SICK EVER SINCE. ANY INPUT?
elelz mark75690
Posted
I do know that with Chronic Pancreatitis the amylase and lipase are generally normal - they primarily elevate with Acute Pancreatitis. I've also been reading about the different radiology tests. According to several sources, the CT and Ultrasounds do not pick up early changes, just long standing disease changes. The sources recommend the EUS and ERCP as much more definitive. Of course, they always start with the cheaper, less invasive testing! Hopefully you can get in to see a Gastroenterologist which will help get to the problem quicker.
The constant discomfort is very discouraging.
Leigh- I don't know that I feel weak or fatigued as much as I just don't feel like doing anything. Maybe that's the same thing!
Good luck All.
mark75690 elelz
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tammie68224 mark75690
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If we all listened to everything some of our docs told us, we would all believe that you can only get this by drinking excessively and doing drugs. They only know what they are taught in medical school and they don't listen when a patient tells rhem what's going on with our own bodies. I'm very sorry if I sound a bit jaded when it comes to Dr opinion, but I have had quite a few bad experiences and afraid to even go to the ER when I need to.
lotus15549 tammie68224
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Hi tammie,
I too am starting to lose faith in doctors as they simply don't test everything throw pills at you AND when they can't figure out what is wrong they treat you like your crazy. How long have you been suffering? When were you diagnosed?
Shareallicu tammie68224
Posted
That's Very True Tammie!
I have been experiencing pain/discomfort in my pancreas area. I've always had pain in my intestinal area (since I was a teen) and I had anorexia as a child. I heard malnutrition can cause pancreas insufficiency. I stopped over activity in my adulthood, but not the extreme food restrictions until age 35. When I started to eat, by body went down south with pain and urinary/bowel problems galore! Now my pancreas is causing troubles. I've always had indigestion and ate tums rather than food. But it went away in my 30's for the most part, but in my 40's it's back in force! I vomited for the first time about a week ago since childhood and other symptoms that have been torturing me. My doctor never wanted to talk about it when I would go see her!!! I tried so hard to communicate with her for so long, but she would get mad at me when I brought it up, and she would change the subject and make fun of me - criticize me etc. I don't think she had a clue what to do!! I never drink, do drugs or smoke, so she assumed I should be healthy I guess. I'm trying to figure out how to change my PCP. She was the first doctor I ever saw regularly and she was horrible to me! I'm afraid to go to doctors now.
jazziesamnang tammie68224
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Hello Tammie and all,
I know this post is several months old but I can be the first to tell you all that although alcohol and fatty foods can trigger a pancreatic attack, it's not necessarily the cause of it. I was diagnosed when I was about 10 years old and I am now 27. I went several years without an attack but I was recently hospitalized for 2 weeks at a time a few times within the last few years. Because I was diagnosed at such a young age, the cause is still unknown. While I was hospitalized for an attack this past April/may, I got my gallbladder removed (polyps was found) in hopes that it would solve the problems - but surgeons made it clear that they didn't think it would. I go about my day every single day feeling fatigued and feeling full and sick after a few bites of food. I feel when I'm about to get an attack when my upper abdominal feel full/swollen and it even feels firm. I'd feel like I gained 10 lbs over night! The attack usually happens when I wake up suddenly in th morning. Usually I'd go to the ER because I know when it's my pancreas. My lipase levels would be high (normal is about 50-80 for a normal person) with my levels at 350-500 and they would send me home in pain (never go home in pain because it will not subside especially if you plan on eating) and I would come back the very next day or same night as the pain worsens. Usually the doctors are very surprised when they see my lipase/amylase levels at 1250-1300! My pain tolerance is pretty high so morphine doesn't usually work for me. After then, I'd be in the hospital for a 3-14 days at a time on the strongest narcotics they have with no food or water until the pain completely subsides. I am now diagnosed with chronic pancreatitis and I don't think there's anyway to fix it - issues can probably be alleviated with risky surgeries.