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...

623 Members

2,803 Posts

0 Online

gill1234 01/26/2015

I haven't posted for awhile for as instructed by doctors to take my enzymes and eat a low fat diet. I never drank much and haven't in 4 years. I've been doing that for a few years and overall felt pretty good. In spring of 2014 i had a few bouts of fevers weekly and for a month and felt so bad I was admitted. Nothing found in blood or anything glaring. Abdominal CT and MRI were clear and had an MRCP which was also clear per a few large hospital specialists. I have had a few EUS over the years in 2010 and 2011 with no major findings, but mild inflammation if any and deficient function test. The weekly to monthly feeling like the flu all over for a few hours a day that lasted for a number of months until Thanksgiving and it nearly occurs every day. I'm wiped out no flu can go on this long. I've had follow up with my PCP and some Rheum for I appear to present lupus per recent blood work, for they always treated my pancreas issues to Sjogen's syndrome which was determined by a major world class hospital. Basically I hate the battles over the years to get answers and I stay off self diagnosis, but I am oh so scared this is now pancreatic cancer. I backdoored a follow up with a specialist in a few weeks to demand another EUS to look for masses etc. I just don't think pancreatits alone or lupus or sjogren's and make somebody feel this awful. I only had mild pain and stool problems for years never been on pain killers, but never felt like the flu nearly daily. I'm down to soup and very small meals because I just don't have the appetite. I'm not in massive pain, its just dull to my back and laterally at the front as its been for flares for years. The main symptom I'm most worried about is feeling like the flu for it is noted on many sites as cancer no matter what I read. When it walks like a duck, swims like a duck and quacks like a duck it just fits. Just seeing if long timers ever feel this way of an overall not well feeling with aches and chills like the flu.

yeuker 01/26/2015

Hey Gill,

In November and December of this year, I felt more sick with the flu than with anything else. Terrible nausia, sore stomach (not pancreatic pain but actual stomach), gas on both ends and general unwell-ness. I felt so incredibly sick during these months I could barely get anything down and my appetite was below zero. I don't have pancreatic cancer and it is unlikely you do either, on the basis of the flu symptoms alone. This is a scary disease and filled with worry (believe me I feel you) but what you are going through is likely just sickness due to this terrible disease. Keep your head up.

lynette2 01/27/2015

Before I was diagnosed with idiopathic pancreatitis I was diagnosed with fibromyalgia, about a year after being in a car wreck. It felt like the flu, everything ached like the flu and no/low energy (not typical of a 30 y.o!) I had a lot of family stressors at this time too, was going to graduate school and working....basically burning the candle at both ends. Ah! the American dream!.
Anyway, this went on for a number of years until I found a wonderful Rheumatologist who had a compounding pharmacy mix me up a capsule of malic acid, quafenasen (same thing in cough syrup) and magnesium and it worked in about 6 weeks. I think the malic acid makes it unstable, so a compounding pharmacy has to mix it up on a monthly basis. It cost me about $30. You do have to have a doctor prescribe it.
Fibromyalgia is a controversial diagnosis, some doctors don't believe in it.I think it is the old "rheumatism" that folks used to talk about. The story that I hear over and over again of folks that have it,, is they had been on a fast burn or their body has been through a lot in recent times over time which it sounds like you would certainly qualify under.
As for scared, it is not sustainable. I am a breast cancer survivor too and my oncologist gave me some good advice when I was deciding on which if any further treatments I would do and he said "Make your decisions and never look back." That was five years ago, so I have had time to practice it. It isn't easy but I have found it a very useful and freeing strategy. Godspeed.

Jinxy7 01/30/2015

Even prior to my recent CP diagnosis (although I've had symtoms for three years) I have had flu like symptoms. They are miserable..and like you, I can have them daily. Usually for me I will struggle for several weeks...then it improves, and I think "oh maybe it will never come back"...and then it sadly does. I tend to run a little fever too, I feel exhausted, achy and just plain fluish...it stucks. Now on top of that I have this CP stuff...and I have been feeling pretty miserable lately. I'm actually hungry but can't eat much, because I immediately feel full and the pain and bloating gets worse. I too think I have cancer at times. My internist wanted to do a PET SCAN but my insurance denied it. I feel like it would have helped to put my mind at ease. I just feel so crummy most of the time now. The exhaustion really bums me out. Lately I've been having a lot of back pain too, it's in my upper back, so I'm assuming it's CP related. I don't have much advise to give, but just wanted to let you know you're not alone. This is a weird, and very nasty disease that doctors really don't know much about and struggle to treat. I hope you get some relief. I have also been diagnosed with CFS. I have adrenal insufficiency from years of off and on steroid use due to long term asthma. UGH..my health issues are getting too long to list. SIGH!!

barbray10 01/31/2015

SOrry to hear you are so sick. My sister had the flu for three weeks and was sick as a dog. Vomiting and diaherrea. Taking her forever to recover. Pancreatitis hurts like hell, the only way I can explain it. Don't jump to cancer but get it checked out by a good dr who specializes in pancreas and digestive system.
I've had three pain blocks of the pancreas and it's taken the pain level down.
Good luck and prayers coming your way.

deleted_user 02/02/2015

I feel like that alot too.Just had another ct scan.Get one every 6 months.Have a EUS comming up soon. Have had numerous ERCP,EUS,and hospitalized three dozen times so i know where you are comming from.Scared everytime i start feeling like i have the flu.My g.i. doctor told me last week the longer you have chronic pancreatitis the more likely it will turn cancerous.Ct scan showed spleen is three times normal size,pancreas is enlarged or thickened.Already took my gallbladder and now they want to take my pancreas.gill1234, try not to panic.I know i know it's hard but let them do more tests.You are not alone with the feeling like the flu symptoms.I have had 38 acute attacks and am still here.I hope you start feeling better soon.Don't give up.FIGHT IT !!!!!

Sesser 02/02/2015

Sending you a PM-similar issues

gill1234 02/03/2015

Thanks for everyone's thoughts and understanding. I had a turn last week and have felt quite well. Counting every gram fat and under 15 daily for the last two weeks has helped. I have the GI follow up with the commandos at the big univ hospital next week and will review things and hopefully get a scan to compare to 2011 EUS. Keeping spirits up.

angelica6257 02/03/2015

I am new to this site, recommended by my Dr. To help with symptoms I have found to try and eliminate gluten from the diet. Also don't mix carbs with proteins because protein gets absorbed mostly in stomach and carbs in pancreas. Anything that promotes inflammation should be eliminated. I was diagnosed with diabetes also, which is a symptom of this. Try to abstain from sugar as well.

Join the Conversation