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...
Hi!
I am new here and am so glad to have found you all! I would greatly appreciate any thoughts you could share based on your own personal experiences with pancreatitis because I am at a bit of a loss. I have been to an internist for various abdominal symptoms, and have been told on both visits that it is chronic pancreatitis (although the tests are still ongoing and so far show nothing). I just don't think this makes sense and am wondering whether it could be IBS instead (or something else entirely?). Any thoughts would be greatly appreciated!!!
My symptoms are as follows, and come and go; lately they have been around more often, which is why I finally bit the bullet and went to see a doctor for it (no medical insurance):
-severe almost constant bloating where my entire abdomen goes quite hard (I am skinny and underweight, BMI under 18, yet it makes me look 6 months pregnant)
-stools that range from yellow to bright orange (as in carrot, sorry about TMI) and somewhat loose (but not diarhhea)
-mucous from time to time, often discharged separately from a bowel movement (sorry again about the TMI!!!)
-very sensitive blood sugar; get the shakes and irritable if I am not careful about remembering to eat every 2 hours
-pain from time to time, usually in my upper right quadrant; radiates to back...hurts but is NOTHING like what you guys seem to be going through, I feel so badly for you all
-nausea from time to time, no vomiting though...tends to last an entire day or a few days..sometimes it just shows up on its own, other times it happens every time I eat...sometimes eating a high fat meal triggers it either immediately, or the next morning when I get up
-wake up at night occasionally due to pain on the right side under my ribs; recently woke up because I swore I was having a heart attack; it was like someone had taken a metal belt and tightened it around my chest where my brastrap would be and was pulling it as hard as they could...I have an unusually high pain threshold but must admit had never felt anything like it...since my breathing didn't seem compromised I sucked it up, figuring it wasnt' a heart attack and after an hour or so it subsided (hope that doesn't happen again anytime soon...got very very close to dragging myself to emerg)
-a few times my entire abdominal area has felt itchy, but no visible rash
-it seems at times my face is a bit orangey...but not my eye whites...or am I just imagining this?
-sometimes I feel sick every time I eat, other times I feel fine
-symptoms improve if I cut out fat
-when I am going through a period with a lot of these symptoms, sometimes when I eat I feel the food is all just sitting there, somewhere around my back teeth maybe, and just not moving through my system, and I don't mean constipation, just somehow the whole digestive process has ground to a halt; in fact when I am getting alot of the symtpoms, my whole digestive system seems out of whack and everything starts being off
-I have to be careful to sleep elevated, or I wake up from coughing fits, which I suspect is GERD but I haven't bothered to have it checked out because keeping elevated at night solves that problem...probably should get a scope for it one of these days though...
-very tired a lot of the time
-I don't drink any alcohol at all, never have, nor do I smoke
The tests I have done so far have been bloodwork, which once showed slightly high (double) amylase and lipase (that was in May) but recent bloodwork (2 weeks ago) has been cheerfully normal except for calcium at the low end of normal, and very slightly elevated Rheumatoid Factor.
Normal CT scan.
An MRI is tomorrow (I have to fast after midnight...will be a fun blood sugar day...ugh)
The internist is absolutely convinced this is chronic pancreatitis. I am absolutely convinced that I don't want to have this and that the symptoms are not severe enough for it to be this, nor do I think that they match closely enough. The only thing that makes me hesitate is that my Chinese Medecine doctor (who treats my allergies) took my pulse and told me that there was something wrong with my pancreas.
Any thoughts on how to differentiate between this and IBS, or another abodominal problem, would be greatly appreciated! I am hoping not to bankrupt myself with a huge medical issue and maybe just have it go away on its own if I am lucky.
Thank you and sorry about this very long post!
I am new here and am so glad to have found you all! I would greatly appreciate any thoughts you could share based on your own personal experiences with pancreatitis because I am at a bit of a loss. I have been to an internist for various abdominal symptoms, and have been told on both visits that it is chronic pancreatitis (although the tests are still ongoing and so far show nothing). I just don't think this makes sense and am wondering whether it could be IBS instead (or something else entirely?). Any thoughts would be greatly appreciated!!!
My symptoms are as follows, and come and go; lately they have been around more often, which is why I finally bit the bullet and went to see a doctor for it (no medical insurance):
-severe almost constant bloating where my entire abdomen goes quite hard (I am skinny and underweight, BMI under 18, yet it makes me look 6 months pregnant)
-stools that range from yellow to bright orange (as in carrot, sorry about TMI) and somewhat loose (but not diarhhea)
-mucous from time to time, often discharged separately from a bowel movement (sorry again about the TMI!!!)
-very sensitive blood sugar; get the shakes and irritable if I am not careful about remembering to eat every 2 hours
-pain from time to time, usually in my upper right quadrant; radiates to back...hurts but is NOTHING like what you guys seem to be going through, I feel so badly for you all
-nausea from time to time, no vomiting though...tends to last an entire day or a few days..sometimes it just shows up on its own, other times it happens every time I eat...sometimes eating a high fat meal triggers it either immediately, or the next morning when I get up
-wake up at night occasionally due to pain on the right side under my ribs; recently woke up because I swore I was having a heart attack; it was like someone had taken a metal belt and tightened it around my chest where my brastrap would be and was pulling it as hard as they could...I have an unusually high pain threshold but must admit had never felt anything like it...since my breathing didn't seem compromised I sucked it up, figuring it wasnt' a heart attack and after an hour or so it subsided (hope that doesn't happen again anytime soon...got very very close to dragging myself to emerg)
-a few times my entire abdominal area has felt itchy, but no visible rash
-it seems at times my face is a bit orangey...but not my eye whites...or am I just imagining this?
-sometimes I feel sick every time I eat, other times I feel fine
-symptoms improve if I cut out fat
-when I am going through a period with a lot of these symptoms, sometimes when I eat I feel the food is all just sitting there, somewhere around my back teeth maybe, and just not moving through my system, and I don't mean constipation, just somehow the whole digestive process has ground to a halt; in fact when I am getting alot of the symtpoms, my whole digestive system seems out of whack and everything starts being off
-I have to be careful to sleep elevated, or I wake up from coughing fits, which I suspect is GERD but I haven't bothered to have it checked out because keeping elevated at night solves that problem...probably should get a scope for it one of these days though...
-very tired a lot of the time
-I don't drink any alcohol at all, never have, nor do I smoke
The tests I have done so far have been bloodwork, which once showed slightly high (double) amylase and lipase (that was in May) but recent bloodwork (2 weeks ago) has been cheerfully normal except for calcium at the low end of normal, and very slightly elevated Rheumatoid Factor.
Normal CT scan.
An MRI is tomorrow (I have to fast after midnight...will be a fun blood sugar day...ugh)
The internist is absolutely convinced this is chronic pancreatitis. I am absolutely convinced that I don't want to have this and that the symptoms are not severe enough for it to be this, nor do I think that they match closely enough. The only thing that makes me hesitate is that my Chinese Medecine doctor (who treats my allergies) took my pulse and told me that there was something wrong with my pancreas.
Any thoughts on how to differentiate between this and IBS, or another abodominal problem, would be greatly appreciated! I am hoping not to bankrupt myself with a huge medical issue and maybe just have it go away on its own if I am lucky.
Thank you and sorry about this very long post!
That being said it could be so very many things.
1. Do you still have your gall bladder? Your gall bladder and gall stones could have all of these symptoms.
2. Pancreatitis could have all these symptons
3. IBS or Chron's could have all these symptoms
4. A blocked bile duct could have all these symptoms
5. You could have a mass in your pancreas or some other pancreatic abnomally... etc, etc, etc
i am praying that you get into the hands of a doctor that is going to do more than a few sporatic tests but rather review all of your symptoms and all of your tests results to come up with the right diagnosis.
Even if it is your pancreas, if you had pancreatitis at some point you would have been on the floor in pain, vomiting with diarrhea I'm guessing.
I'm not a doctor so I don't really know, maybe someone on here can give you more advice.
Welcome to the group. I pray that you get your answers soon. Your weight is very much a concern...
1. There is such a thing as IBS and some studies link it to pancreatic disease
2. Not all problems with the pancreas are called pancreatitis. There are pancreatic diseases and conditions which you need to be checked for
Many diseases/conditions have similar symptons to pancreatitis only a person trained in Gastroentrology will know.
You need to find the right doctor who will give you a correct diagnosis. I know this is a challenge for those of us who have some form of insurance.
For those without insurance, the challenge is greater. I would encourage you to talk to whoever you can to find programs in your state that will aide in helping you get the proper medical care that you need.
From your symptoms, it sounds like you are seriously ill and I pray, pray, pray that someone in your area will help you get the proper treatment and diagnosis.
If you look up the stats on complications with pancreatitis in the hospital, the risk numbers go up expodentially when it is a "teaching" situation.
I wish I knew a solution to help people without insurance. I have a Medicare Advantage Plan which does not offer me my choice of the better G.I. docs so I have to do a lot of research so that I can control my care.
thanks for sharing
http://www.dailystrength.org/health_blogs/dr-orrange/article/which-complementary-and-alternative-therapies-really-work-for-irritable-bowel-syndrome
There are many websites that talk about IBS, Chron's and Pancreatic condtions
Thank you again everyone, you have been great!
This year I finally found a doctor who figured stuff out. I think I do have IBS but I also have pancreatitis. It went from cut down on stress and take a bentyl to you have a serious chronic illness that could to kill you if something doesn't change. This happened over the course of about 6 months. Now I'm on enzymes, pain pills, and have my own pharmacy of belly meds. Next week I'm having a feeding tube put in.
The IBS stuff in my experience was like a whole belly cramp and as soon as I pooped the pain subsided. I didn't lose weight with it and while it was painful it was nothing like the pain with pancreatitis. The pancreatitis pain it is the most horrible pain I have ever had. I have passed kidney stones without any pain meds but during a bad flare up of pancreatitis a pain pump of dilaudid just makes it bearable. I can't eat or drink anything during a bad flare, my blood sugar gets really high and uncontrollable, and my labs always mess up somewhere (not always pancreas stuff like amylase or lipase but something does change).
Don't give up. A lot of times it just takes the right doctor. I'm not sure where you live but you maybe you qualify for something like medicaid? I am applying for state ins that will still let me have an income. I haven't got an answer yet but I'm hopeful. Right now I am fortunate enough to get it through work but I am worried about job security with all my health crap.
I do know of a lot of programs that help with meds if you don't have insurance if you need that.
Good luck and I hope you get an answer!
Thanks again, and back to playing the waiting game for the MRI results! :-)
I didn't take the time to read everyone elses posts (Sorry everyone). I was wondering if you might look up SOD (Sphincture of Oddi Disfunction), too!! I was first treated for gallbladder malfunction, then diagnosed with SOD. Which has led to Pancreatitis. Unfortanunately, I think you are suffering from one of these problems. Some of us have faired the storm pretty well and other of us (me being 1) have only had more trouble from them preforming surgeries.
You will learn no to just trust your doctor. So many of them just are in it for the money and not the real care.
I hope all goes well for you!!
Stay strong!!
My doctor has been trying for over a year for me to agree to get an ERCP with ERS done and I don't see any indication that it will help me. The risk for me is way too high and I don't feel that I am sick enough to need it.
I am blessed not to need pain meds (unless I have an acute attack) and I don't need meds for nausea.
Just do your homework. Research your doctor, your surgeon and the hospital before anything invasive. When I looked up the surgeon my G.I. doc was referring me to he had 5 malpractice suits against him in the last 8 years!
Here is the link for Florida to do background checking. There is a link on the page to check out any state that you are from.
Being informed is the best thing you can do for yourself!
http://www.floridamalpractice.com/linksdoctor.htm
Forever 4, the SOD actually sounds MUCH more like what I am experiencing, so I am going to raise it with the internist when I see her on Monday - thank you for telling me about it!
I continue to cross my fingers that the symptoms of the last 2 years are just stress related and an odd blip, so that hopefully they will go away and I can start enjoying food again. This past weekend all I ate was bananas and dry gluten free bread. Yep. Pretty exciting eh? Oh, and 2 tablespoons of chocolate ice cream, which I had to sneak because my boyfriend flips out if he sees me eating it because he knows it brings on the pain. I wonder if he is going to start drawing lines on the side of the container to measure how much I have had? :-)
Anyways thanks again everyone and have a good day!