I have been dealing with chronic pain from Pancreatitis for 13 1/2 years now. I haven't really talked to alot of people with this and was just wondering if anyone is having all these feelings that I do. I was at one point seeing a counselor but then my insurance changed after I got divorced and I had to stop. I have a 12 year old daughter that I try to keep alot of my health problems from her. I don't have any friends to talk to, and I'm very lonely. Anyway... if there's anyone out there who would like to talk please just let me know. Thanks, Stacy
Is there anyone out there with Chronic Pancreatitis?
Question posted by Stacy365 on 30 Aug 2010
Last updated on 8 April 2022
The information on this page reflects personal experiences shared by our community members. It is not reviewed for medical accuracy and should not replace professional medical advice.
20 Answers Page 2
SueN2012
26 Jan 2012
Hi everyone! So glad to see some who understand this! I was in a serious auto accident 35 years ago... crushed pelvis, etc. Have dealt with this problem ever since. I haven't drank for 20 years! I have been diagnosed incorrectly and treated for ovarian cysts (even had the hysterectomy to try to fix it!) ulcers, appendicitis, diverticulitis (do have, but didn't cause the problem), which they gave me some really strong BAD antibiotics and then the pain never let up. In and out of the emergency rooms and they'd just give me anxiety meds, made it worse. Now I have COPD and waiting to find out if the meds are going to kill me.
Last gen practice doctor put me on veg based enzymes and peppermint oil... seems to be doing the trick to stop the 25 year diarea, plus acacia fiber, low fat diet, no dairy... I weigh 87 lbs and YES it is very depressing. I have severe spinal pain from the accidents and this has made diagnosis difficult as well.
Will be seeing a gastro specialist in a week. Most of the time I couldn't work and had no insurance, just dealt with the pain... didn't deal with it well! Now this Dr. won't even let me take a tylenol!
My grown kids just say, it's all ok, don't worry... At least they don't tell me 'it's all in your head' any longer.
Anyone else used this natural regime?
trainbaitamanda
14 Dec 2011
Hi stacy! I also have chronic pancreatitis. I was diagnosed 9 yrs ago, after having acute pancreatitis for 2 yrs. I have 2 children, my son is 10, my daughter is gonna be 6 right b4 christmass. I haven't really talked to anyone with this disease either, but have hit a point in my life where I gotta talk to someone, & my insurance won't cover enough of the counseling costs for me to go. Anyhow, I'm new to this site but looking forward to meeting people with the same problem as me. Thanks for your time in reading this. Amanda
Dpsmiths
17 April 2013
Hi Amanda,
I am new to this site, too, and actually, I am writing this for my 78 year old mother who suffers from Chronic Pancreatitis. She just wants to hear from someone else out there with the same problem she has. My mom suffers so terribly with this disease, and I want to help her all that I can.
Diane
Nardia
8 April 2022
Is there anyone here who still wants to talk and share,I realized that these posts are from years ago , I have no body to talk about it with, not even my Dr , feel like I'm alone, Dr is just there to diagnose,there's nothing they can do ,I'm so lost in life... I'm here if anyone happens to read this
Karen13
3 Jan 2011
I too am in the same boat. Gall Bladder surgery went fine but five years latter had attacks just like before the surgery. Gastro Dr attemped a ERCP procedure and set off a Pancreatitis attack. Spent a week in the hospital. Then went to Shands Hospital where the ERCP was done and they openned up a closed duct. After more attacks and another ERCP I was put on Viokase. Viokase was taken off the market by FDA, now I'm on Creon. Also on a low fat diet. Have only had one attack since I've been on the very expensive medication. Not a drinker ever.
want2Bmedless
4 Dec 2010
Hi Stacy!
I have had much the same experience as you. I had severe gallstone attacks for years and the doctors said (about 20 years ago now) that I was too young to have gallstones and they kept telling me to go to Chiropractors because the pain seemed to radiate through to my back.
I suffered for many years until I moved across the country and found a new family doctor who diagnosed it right away. They took my gallbladder out, but to no avail, I still had the terrible attacks... same as before... after ultrasound the GI docs could tell that I had multiple stones in my bile duct. They were not big, mind you, but it turns out that the small ones move around more and cause spasms and therefore more pain.
After my first ERCP, they had managed to remove 13 stones but, unfortunately the ERCP procedure resulted in acute pancreatitis and I, like yourself, ended up in the hospital for almost a month. I woke up from the procedure from the worst pain you could ever imagine... I turned yellow and my stomach/trunk area swelled to almost 3 times the size it was before.
Needless to say, after recovering from that first bout... I was still having acute gallstone attacks... so, off I went for another ERCP... this time they removed a dozen more stones and I went home in a few days without much pain... but months later... I STILL was experiencing acute gallstone attacks, just not as often, but the pain...
So, off I went for yet another ERCP... I ended up with acute pancreatitis worse than the first time and had to stay in the hospital for well over a month. I have never been the same since. I suffer from chronic pancreatitis but I was never told that I was unable to work, although, when I think about it, over the years, I have missed a LOT of work when the pancreatitis flares up... and it does... but thankfully, it has been getting less troublesome to deal with. The pain is not too bad and therefore I just deal with it, but the nausea is almost unbearable.
Anyway, just wanted to let you know that I can relate. I have dealt with a lot of the pancreatitis through strict dietary changes... it seems to get me through. I take massive doses of fish oil and do not eat much meat at all... Also, I really REALLY take my time eating... I eat very slow and if I eat too much it seems to exacerbate the pancreatitis. Small frequent meals... I find if I do not eat for a long period of time (like when I am extremely nauseous) it makes things worse as well. I think I get a buildup of bile in my duct... and was told that I may develop even more stones (they will grow in the duct even though I do not have a gallbladder anymore)...
If you should need anymore tips about how I deal with flare-ups or would just like to vent, I am here... if you have any tips or advice for me as well, I am all ears... a lot of people do not understand... when I tell new doctors (I haved moved around alot) about my pancreatitis, some of them have actually made comments saying things like... "well, you don't LOOK like an alcoholic." I find most docs do not want to even deal with any of my questions or concerns about my condition. There are not any GI specialists where I currently live, so, I am hoping I will be able to cope with my pain and nausea/vomiting and manage it on my own.
Take Care of You...
want2Bmedless
4 Dec 2010
I just wanted to add--- that I am NOT an alcoholic... although when I think of people out there who may be and have this condition as a result... it must be extremely difficult for them to deal with doctors... there are some good docs out there, but some can be very judgemental...
dmfdjttor57
30 Aug 2010
Hi Stacy,
I am sorry you are feeling lonely and have a child to take care of and have to keep your chin up for, that can be difficult, i know. I must ask about your alcohol consumption, as chronic pancreatitis does occur, my mother had it for a number of years, but she was a hard core alcoholic for many many years and by the time she stopped drinking, (in her late 50's she would have a few now and then,) but by the time she really didn't drink at all, the damage was done. I always knew when she had it, the Dr.'s never did and always thought it something else, but with all the things that my poor mother had wrong with her during her lifetime, i kind of learned alot about signs and symptoms of various ailments.
Anyway, was there not a way you could have stayed on your husband's insurance plan? I don't know where you live, but if you really liked your counselor, would he/she be willing to see you on a sliding scale, and if not, is there a low cost clinic that might have counseling you could check in to. To be honest, the very best thing you can do for yourself, drinking or not, is take yourself to an AA meeting and you will meet people and make some friends very quickly. If not interested in that, maybe you can do some volunteer work at your daughter's school and meet some other mother's that may have some of the same problems you are experiencing after a divorce. I also know there are clubs and meetings out there for divorced people having a tough time and these are all things you can look in to if you are lonely. It's hard to get going, i know, but fix yourself up and get out there and meet some new people, i know your pain may make it difficult, but you need to see a Dr. about that part. I lost my husband to an overdose of drugs and alcohol 15 years ago tomorrow and he was the love of my life, but we get stronger and things get better with time, so hang in there and do what you can to better yourself and your circumstances and you never know what is waiting around the corner. Lots of luck to you, write anytime you wish.
Dede
Stacy365
24 Sep 2010
Hello thanks for answering... first of all I have never drank. I had some gastric problems for about 3 years then finally they did an ERCP ( scope down my throat) and with that it sent me into a full blown pancreatitis. I almost died and actually lost 3 weeks of my life. After that I thought that I was finally going to get well and start living my life again... wrong. With all the problems and all the years dealing with it I found out that the pain was never going to go away. So they told me that I had Chronic Pancreatitis and that I couldn't work anymore. It has changed my life forever and I would never wish this on anyone.
Now as far as the insurance thing... when this all started I wasn't married. I was working but they found a way to fire me so I lost all my insurance. I tried to get help before I went to the hospital, but no one would help. I do have health insurance now and I also have great doctors, but it still doesn't help with the moods. I have talked to people and tried to talk to family but after awhile people get sick of hearing your problems. So that's when you just start saying "everything is fine". So that's what I do!
You said in your letter that things get better and you get stronger with time... I'm sorry but that is very hard for me to do. After 2 failed marriages (one that was very abusive) financial problems, feeling lonely, empty, and scared, it's very hard to do that. How many more years am I suppose to wait for things to get better? Is this how it's going to be for the rest of my life? The one thing in my life that is wonderful is my child. She is why I was put of this Earth... but one day she will be off to college and doing her own life. What will I do then???
Anyway, thanks for listening to me whine and thanks for taking the time to write me. Best of luck to you and your family. Best wishes, Stacy
Ppittman6564
29 March 2011
Hi Stacy, I have been dealing with this condition for the last 5 years. I have been hospitalized many times in the last 5 years to many to count. I have had part of my pancreas removed and I am not diabetic. My problem is more pain related. I have yet found anything to take the pain away all the way except a nice 5 day stay in the hospital. I know they don't know much about the pancreas and I hear it all the time from different doctors. My doctor says I do not have alcoholic type of Chronic Pancreatitis. Then I had a doctor tell me there is no such thing it is all caused by alcohol. But he is a the doctor that messed up on my last surgery. and as far as depression goes you will go through it. Just got to keep this in mind. You have to do what you have to do. and if you don't know about something ask your doctor. Make your doctor your best friend and don't ever lie to him. If you don't trust your doctor then get a new one. That is the hardest thing I had to do is find a doctor that I trusted. They are some out there that due care.
mnmomma2011
16 Aug 2011
Hi! I have currently been diagnosed with chronic pancreatitis & I don't fit any of the causes other than age group I will be 36 in less than a month. I am not an alcoholic have NEVER liked the taste of feeling from it, not a diabetic & I have complained of severe upper right quad pain for over 10 years & was literally treated like a drug seaker! I have a husband who bless is heart & remained by my side. We have 2 small amazing children under the age of 7 and the only reason I found out that I have this is because I FINALLY HAVE A GI DR WHO CARES!! I had a MRCP done back in July & that is what showed my problem!! Please help me? All help welcomed PLEASE!!
CatLadyLori
31 Jan 2017
I've had this for over 35 years. Tired of the accusations and frustrations right now. I have days that are better but this whole issue is exhausting and frustrating. Pain is unbelievable. I have more info on this subject that most doctors.
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pancreatitis, chronic pancreatitis, pain
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