Describing pain related to chronic pancreatitis?

Pancreatitis
#1

Hi team,

Like many of you, I am still struggling to get a definitive diagnosis of chronic pancreatitis. As you know, I’ve had every test possible, and still can’t get an explanation for my chronic pain and other symptoms related to pancreatitis. One area where I am struggling with my doctors is getting them to tell me if the pain that I experience is similar to other patients with CP. One doctor says “pancreatitis pain is felt around the belly button”–another says, “Pancreatitis pain is felt in the upper abdomen, central, just below the xyphoid process (just below center rib cage).” Yet another tells me that it is felt on the upper left side, just under the ribs–while still another says it is felt on the right!

So…I would like to ask the community where they feel their pain, and to describe it as specifically as possible. Since none of my doctors actually has CP, my assumption is this group can better tell me if the pain that I experience is indeed from CP, or somtething else.

Here is a detailed account of my pain: I experience pain everyday. On the “good” days, I experience moderate pain on the left side, just under the rib cage. Every morning I wake up with minor nausea. On the “bad” days, the pain increases to very severe, and remains mostly on the left side, although it also seems to migrate to the lower abdomen, still on the left side but nearer to my belly button. It also extends to my mid back on the left side. Whenever I eat, I feel incredibly full (even though I have only eaten a little bit) and have a lot of gas. Also on bad days, I sweat alot for no reason, have diarrhea, and eating is really the last thing I want to do.

Does this sound like you? does this feel like the pain of CP that you feel? or do you experience pain differently or in another area? what side, where, when?

For those of you who know me, I’ve being doing pretty bad lately, lots of pain. Been to the GI and he has basically given up on me–I’m sure you’ve heard it before.

Thanks folks, I really appreciate your help and love the fact that this group exists.

Archer

#2

My pain began in the left side just under the ribs. When it gets bad it moves to my back, same side, sharp pains in my chest and under my left arm. The pain in the left side under the ribs is hot, burn, non-stop as well as my back. My attack was so quick that I went to ER and got pain meds before I could tell anything else. Other attacks had same pain but with my pain meds I never got to the point to throw up. Mostly just lay there any try to not move. Heating pad is good. Laying on the side that hurts is good. Hot tub is good. What are you eating? Eat only fluids for 24-48 hours. My pancreas has been “sleeping” for almost one year. Praise God! I hope yours does so soon.

#3

Thanks Sheillie! My pain has been constant (from mild to severe) for a year now, and before that it was intermittent for about 5 years. Things really started to go downhill after I had an attack of acute pancreatitis that landed me in the hospital 3 years ago exactly! not really a happy anniversary :( When I have attacks, I don't generally eat, just fluids and maybe some very light soup. The enzymes don't help (do they really help anybody? I haven't heard ever anyone say they helped *substantially*)

 Your description sound *very much* like my pain. I'm very interested in what other folks experience, so please post of you are so inclined. I want to use this data to prove to my doctor that it is indeed CP.

Again, I am grateful for all of your support. Archer

#4

Hi,
This is the second attempt at typing this up. Pain when I was first diagnosed with CP was excrutiating. I laid on a couch for 3 years and was in and out of the hospital until finally I had a whipple. Description of pain: lower ribs feel like they are being squeezed by a vice grip, back pain on left side below shoulder blade like being stabbed in the back by a butcher knife, the pain from the back shoots to the front of the ribs on the left side, constant bloat feelings or constipation.

The whipple took care of the pain. Then 9 years after that the pain came back. Three more years in pain and fighting with doctors, until I had another surgery and they took out scar tissue and I guess I’ll call it a little more of a whipple procedure.

Enzymes: when I was young I thought that the surgeries took care of everythign so I didn’t keep up with the enzymes and I didn’t take them. This was a mistake. Recently at the age of 42 I landed in the hospital with what I thought was unrelated issues. Xrays showed that most of my pancrease was calcified. I was suffering from severe malnutrition. Testing revealed that I have hereditary pancreatitis. Taking the enzymes consistently over the years might have slowed down the deterioration of my pancrease. I am back on the enzymes and it has reversed the malnutrition! It took about 6 months, but I am getting energy and feeling better ever day. I would highly recommend that you take them. I’m also taking a ton of vitamins. My doc says that I should take the medicine to delay the further destruction of my pancrease as well as prevent issues that will occur as I age, such as bone loss and malnutrition. He recommends a healthy diet and exercise as much as possible. I’m working on these things. The stronger you are the better off you’ll be in the long run.

One thing I did have to do in order to finally get an accurate diagnosis. I insisted on seeing a specialist. I had to fight for it, but I finally saw someone that understands the disease. I’m not always happy with what the doctor has to say, but I finally have an answer for what I have and a doctor that believes me when I state what my symptoms are.

#5

Archer,

Unlike you and the others that have answered here, my pain is on the right side. The rest of the symptoms are the same - only on the right side.

What I do know is that just because you have pancreatitis, doesn’t mean that the whole pancreas hurts. My biggest problem is in the head and body. The head lies to the right, the body to the center and the tail on the left. This would explain why you get so many different answers from the doctors. It all depends on where the pancreas is defective. So all of those areas and sypmtoms are legitimate. Naturally I hurt center to right, around to the back and up underneath my clavicle.

I don’t know if your doctor is a specialist in pancreatitis. If not you might want to find someone that is. A Specialist will know the right tests to determine where and how severe your CP is.

As far as digestive enzymes are concerned I have had heard two theories. One that they help to slow down the degeneration and two that there is no evidence that they do anything.

I was having trouble with bloating, gassiness and belching. I was taking enzymes. He told me to get off them and see if that helped. I got off and it did help for several months. Then it all came back, I had a good supply left in my cabinet, so I started taking them again and it helped. Then it all came back again.

What the doctor said is that I might have to increase the amount I take. I tried that and it helped again.

So the long and short of it is - everybody is different and different things work for different people. What works for you may be a little different than what works for others. I agree with the heating pad. There are times when I live on mine. I also agree that getting out and walking or getting some form of exercise helps. It helps your food to digest better and the fresh air is uplifting. I cannot do anything that involves rotating or bending at the waist. That just irritates my pancreas. As always start slow and build up.

God Bless and Keep the Faith,

Vonnie
Psalm 91

#6

Enzymes seem to help digest my food just fine. If I forget to take it, I notice with a heavy, uncomfortable feeling and so I pop one real quick.

#7

Sossa has explained her pain about right, in my opinion…The first description of pancreatic pain was by an Italian doctor, where he compared the pain “to being torn apart and devoured by dogs”…That’s the essential problem in communicating the intensity of pain to GP’s…there is no hyperbole …comparing it to childbirth is allegedly accurate…I can’t empathize there however.
I had 5 attacks prior to diagnosis and Whipple and each were of total intensity…
Onset: (1-3 min) vague at first around stomach area but enough to make you seek a prone position, then fetal…hugging your knees…twisting knife feeling in general abdominal area
Event:(5-10 min) Pain escalates, yes escalates!, and spreads to front and back in abdominal area as defined by the rib cage…by this time the fascination of what’s happening transforms to a quite primeval sense of hanging on though you are positive that you will not be able to handle it without collapse of other systems (heart/brain)…as you are coping though there is a perverse sense of resignation, that I believe is just being succumbed, and there is nothing you could do except remain in fetal position…and just as it reaches its zenith, it leaves…not to say that there is no pain…it just becomes worldly again
Post event (1-3min) General abdominal pain, the dogs have finished chewing ,profuse sweating and weakness mitigated by the awareness that you have survived
Then the problem becomes how are you ever going to explain this to a GP or anyone …when you are quite certain that nobody has experienced this and lived…at least if you were shot in the abdomen at close range you wouldn’t last too long in any event (remember the old cowboy reference to “gut shot”)
In short I was diagnosed with PC, after ultrasound/CT/MRI, then ERCP.
I was a candidate for the Whipple, tumor was benign so I didn’t require chemo nor radiation (Pseudocysts are grossly visible and well-demarcated cystic lesion, which contain necrotic-hemorrhagic material and/or turbid fluid rich in pancreatic enzymes. The cystic contents are enclosed by a wall of inflammatory and fibrous tissue devoid of an epithelial lining. Pseudocysts are due to extensive confluent autodigestive tissue necrosis caused by alcoholic, biliary, or traumatic acute pancreatitis, that is why they are also called “postnecrotic pseudocysts.)
Although diagnosed with PC I don’t usually refer to it as such, since the absolute morbidity of other tumors and their consequences makes me humble …and with those tumors, it seems the pain is not a great feature that brings folks to their GP ,but rather jaundice and vague digestive discomfort… mimicking hepatitis symptoms…and in many cases it is already too late since the cancer has and does spread to other areas and a Whipple would be of only palliative consequence.

#8

I feel my pain mostly on the right side just below my ribcage, extending to my back (at the same level). Recently, the pain has migrated more centrally and sometimes to the left. The pain is gnawing and causes a lot of nausea. The pain is fairly specific to an area, not vague or random. Heaven forbid should someone try to palpate the RUQ area. Just light palpation sends me through the roof. Doc K is well aware of this and does not even bother anymore. However, when I come to the ER (which has been more often these days), the docs seem to feel it necessary to push away even though I ask them not to.

My prayers go out to you and to all for pain free days and nights.

Teresa

#9

Man! Pluggan, hit it on the head! Being eatin alive by wild dogs. Thats the best discription I’ve heard yet,
but fortunately I’ve never experienced it, but I did experience a ruptured bowel, about 15 years ago, and the pain is exactly the same, except its a little higher just above my navel, and I’m talking about a flare-up, not the constant ache in the back. Pluggan almost had me in tears, with that discription.
Take care

#10

My first couple acute attacks, when all this !#$% started, going on 8 years now, was like a stabbing pain, right under my ribcage in the left side back, they sent me to hospital, but the acute attacks I get now are like getting punched in the stomach,over & over & over, the pain is right in the gut, I cant even describe it, like plug said with the dog thing, is the best. then theres the mental anguish, of wondering how much ya can actually take, till the ambulance gets there, and talking to an ambulance operator who sounded like she just got up, and coud;nt be bothered, does’nt help. Man the whole thing is $%^# %& sorry bout the language, it just goes with the disease,
I’m so sick of this %$#! even though I hav’nt had any major pain in 3 mths, thanks to watchin what I eat very carefully, And that little ache in my back, helps me with denial. I can’t even go to a restaurant with anyone ,not only because I can’t eat most of the food, but I end up being the focus of attention! people pickin my meals etc.
I ride a motorcycle, and am constantly worried I’m gonna get an attack while riding, because the attack does’nt give me much time, it starts as a small ache in my gut, and in about 15 minutes I’m in a fetal position. Believe me or not, I think about it especially when I’m doing 70mph on rt 95. It ruins the ride. I carry enzyme and morphine pills on me at all times.
Anyway thanks for letting me rag man! Know that your not alone.
"And this too shall pass"
Hughie

#11

hey hughie, never feel bad for airing out, yes as i understand thie wonderful enemy, cp, degresses! we are all in the same boat here and we are here to support each other and yes even complain ! but in it all we each learn from one another ! thats what makes it so great! plus we make wonderful friendships ! whether it is cp by self infliction or hereditary as mine, we have it and it is real and a disease that rears its ugly head with avengance. its a pain in the butt and the stomach !!! have a great day, my body is tired and we have now 5 more days of school and i can then lay my body down and let it rest ! hang in there and never feel bad about complaining !
julie

#12

Hey guys,

It sounds like you are having a season of pain. My pain usually comes in late summer, early fall. I do agree that we live on the edge of wondering when the hammer will fall again. In my case that can cause a certain amount of depression. The unknown. Fortunately I have a wonderful group of people that pray for me all the time. I have kind of neglected my prayers for all of you. I will start that up again as soon as I am done here.

God Bless and keep the Faith,

Vonnie

#13

Hi Hughie, Your probably snoring by now-lol This is the first time I have =
been on in a couple days :frowning: My best friend came into town, so spent the d=
ay with her on Wed. and man did it wear me OUT! Darn her-lol…Anyway yes t=
here are Wonderful Wonderful people here, that share a lot of information a=
nd a ear to vent, complain, or whatever my be on the mind! I have been a me=
mber for I think coming up on 3 or 4 years :wink: I have meet some AWESOME Fr=
iends, and confident people This is the Best Place in the World :slight_smile: :slight_smile: =
:slight_smile: I would have to say if it weren’t for my very good friends here on “=
CarePlace/Firefly” I would of slipped up myself! I have not drank in 5yrs 4=
mos. Go Me-lol I haven’t done “pot” in I don’t know how long, the only dru=
gs I do our the meds. prescribed to me, and over the counter. I want to Tha=
nk You for saying prayers for me and thinking of me today! It is getting la=
te and still have a few emails to get out so better sign off for now, but h=
ope to hear from you soon :wink: Oh Julie is an Awesome Friend!!! and has bee=
n a blessing in my life, it’s only been the last few months that we have co=
nnected and it’s beautiful!!! I should tell everyone on here that they are =
Awesome Friends Too! sorry if I offended anyone!!! Ok Big Hugs, thoughts an=
d prayers coming your way…
With all my Love, Mrs Barb/Barb

#14

Hi. Even though this thread is a bit old, I thought I’d add my 2cents. My pain is always on the left side, under the rib cage. Occasionally I will feel some towards the middle but not always. The pain often radiates to my back as if I were impaled on a rod. It is such a deep pain it is almost difficult to point to it as it is in the center of me. Mostly I would describe it as a burning sensation, sometimes almost a gnawing, grinding type thing.
Now that I’ve had the spinal implant, the pain doesn’t escalate as badly but my body still perceives what’s going on. It often feels more like a sensation of pressure as if I had a balloon or something that presses on my stomach, lungs, etc. The closest I can describe it is if you had the volume turned way up and even though you can’t hear the sound you can still feel the vibration and pressure of the sound waves. My body seems to still know something is going on that is not right.

On a funny note: I was laying (on a gurney) in the hallway of the ER one time, waiting to be seen. After an hour or so (maybe 3 or4) along come 3 med students. When I told them it was my pancreas, they proceeded to argue with each other over the location of the pancreas. I finally informed them of the correct location, rolled off my gurney and told my mom to take me home.

#15

my first attach felt like a heartburn ball, right in the center base of my rib cage. I went to the hospital to get screened for a heart attack. My second attach was all along the bottom of my rib cage but not centered. I’ve been asked if my back hurts because it can hurt there as well. I’ve only had 2 attacks, knock on wood.

#16

Just thought I’d drop a few lines.
Thank God I’m in no major pain, except, believe it or not, my hip, and my back, a couple weeks ago I littraly could’nt walk without a cane! Damn hip, I had to turn back home from my first motorcycle run with 80 other bikes, yesterday, I turned back, because its my back and hips turn to start their sh-- ! I got lost trying to get back home, I got caught in the rain on the exprswy, talk about gettin the ole tcker goin! lol Anyway I got home safe, it mighta been a pain in the az, but at least I forgot about my CP, I was too busy tryin to find a spot to pee, I could’nt get in the house fast enough! lol just thought I’d share dat wit you’s. Anyway, gonna have another hot soak,(helps with that little reminder under ribs in the back) then play some on-line pool. ( POOLSHARKS.com)
I play under Hughie721 if anyone feels lucky! lol
Every1 have a nice day.

#17

Hi Jewels,
I think we are all kindred spirits, whatever that is, I’ve also been through 4 major surgeries, had a colostomy for 7 years, a couple more ailments and we’ll be able to get our med degree, I was in intensive care for 11 weeks,
etc, what i want to say, is, after reading your response, I feel guilty because I’m relatively pain free at the moment, I have that little ache, that moves around my upper torso, nothing a good ole Dilaudid cant handle! reading these posts worries me sometime, what all you guys are going through,is most likely in the mail for me also. My heart is aching for ya! It really does suck! Especially for you, you don’t deserve this, I can tell what kinda person you are, just by reading your posts, I on the other hand, brought this on myself! With my hedonistic, self indulgent, instantgratification, alcholic, drug addicted, ( I had fun with what I can remember) lol. Anyway I more or less am trying to pay the piper with acceptance, its hard. I deserve what I have( I’m a Catholic) and still is’nt half as bad as you and alot of other people in here, I do know how bad it can get.
Well thats it for the night, gonna take my tamazapam and sleep like a baby.
Guess I’m still a druggie! lol
Good to hear from ya mrs barb, I’m gonna do for you something I hav’nt done in a long time! I’m gonna shoot a Lords prayer up to the boss for ya.
Your pal, baby hughie.
You can always e-mail if you want.
Goodnight

#18

highie, you are sooo right on track with this crap ! it starts small and fo=
r a second i think oh i can handle this, and before anymore thoughts enter =
my brain, it hits so blasted hard and yes, you mentally go to the place of =
“how much more can i handle” i am entering 10 years of this and have had my=
gallbladder removed then 80% of my pancrease and the splean went and a bow=
el reconstruction, now on top of the cp i catch EVERY virus possiable, i s=
wear if anyone in newton ks gets swine flu, it will be me, now you know how=
my luck goes, i am now battling a severe sinus infection once again, i wor=
k part time in our school district and the little ones keep me sick 9 nos o=
ut of the year, i need to get out of there ! i also became diabetic from th=
e surgery, the 7 days after 11 days after the removal of my pancrease i had=
a secondary infection and my imune system never recovered, then 1 year to =
the month after the big surgery came another killer, i had 10 hernias in my=
stomach from the big surgery and returning to work, so they removed scar t=
issue for an hour and a half and then wrapped my tummy in gortex mesh, i am=
a damn mess and my point is, it is all from chronic pancreatits, it is a d=
evil of a disease !i wake up everyday and look in the mirror, i am not yell=
ow and i am breathing, it is a good day ! well anyway just wanted you to kn=
ow i totally understand and then depression, oh my ! well i hope everyone i=
s having a relatively pain free night ! love to all
julie=20
hey, mrs. barb !!!

#19

Hi, Wow! great comments.

 So I just had my worst attack yet, pain-wise, and have been laid up for a week now. More tests, no real solutions. As usual, the doctors can't seem to understand the amount of pain I am in, and as my pancreas still looks "normal" I'm having a hard time convincing the doctors to take me seriously. I think "being torn apart" is an accurate description--I'll use that tomorrow when I talk again with the doctor. The intensity comes and goes, but it is now always there.

Others, how do you describe and locate your pain?

 Thanks again for all of your support,

 Archer

#21

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