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?
- Asked
- 30 Aug 2010 by Stacy365
- Updated
- 11 January 2018
- Topics
- pancreatitis, chronic pancreatitis, pain
Details:
Responses (12)
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.
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.
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...
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.
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 Apr 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
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.
Dpsmiths
17 Apr 2013
Hi Stacy,
I see that you posted this on August 30, 2010. I am not sure you are still having your problem with chronic pancreatitis, since it is now April 16, 2013, but I thought I would give it a try. My mother suffers from Chronic Pancreatitis, and has, for the last 6 years. She is 78, and is looking to just speak to someone who is suffering like her. I just wrote a long post a few minutes ago, and then saw your post. We live in Petersburg, Virginia. My mom's phone number is 804-861-2107.
daviskingskid
13 Aug 2013
Hello DP smiths, I was going through some posts and I saw yours. I have been suffering with chronic pancreatitis for about 12 years. The doctors have put me through a lot of tests and tried lots of treatments, but none of the treatments help. I am now being scheduled for a total pancreatectomy with islet cell transplant. That is a major surgery and I am a little scared, of course. When I started looking for support groups, I was trying to find one for the islet cell transplant, but I don't know what to look for. Anyway I I just want to talk to some people who are going through what I'm going through, maybe compare notes, etc. I know that your mom must be in a lot of pain because chronic pancreatitis is quite painful and debilitating. I hope she can get some relief.
stingray008
17 Apr 2013
Stacy,
It all began for me in 1995. with a life or death pancreatitas attack.The doctors advised my GF at the time that they didnt think I was going to pull through the night before and did not think i was going to make it that night as well... I became a diabetic about 3 to 4 years ago as well... I am about 15 to 20 lbs underweight... The pain can beyond description at times... Yes I was a heavy drinker at times... It is limited currently...
I am down to about 10 % left of a working pancretas... I have just gotten a new G-I doctor and have some new hope at this time... new meds... and possibly HOPE... Good luck to you Stacy...
Rachg
2 Feb 2017
@stingray008 Your story was inspiring. My children's father has suffered a similar experience and its brought me some concern for their long term quality of life with him. Would you mind sharing how things are going currently with your health? Are you able to work?
Best to you
CatLadyLori
7 May 2017
Rachg, I live with this chronic condition and my child grew up with me going through it. It got tough at times but he is an adult who made it. I'll share anything you might want to know.
Unknown30
18 Apr 2013
I had my first attack back in December 08' and had on and off pain. I have a high tolerence to pain so when I go through flare ups and don't get to see my doctors, the ones I see treat me like a drug addict because I'm not crying from the pain. I was officially diagnosed with idiopathic chronic pancreatitis in June of 10'. Since then I have been in the hospital more than I have out, thankfully my family takes care of my daughter. I have been through many different pain meds and have built up a sensitivity to morphine and my last resort is dilaudid which I can't take through IV. It gets very stressful and talking to someone whom has no clue of the pain we go through is pointless.
mguzman0907
12 Dec 2016
I am not the one who has chronic pancreatitis, my husband was finally diagnosed that he has chronic pancreatitis a few weeks ago. He has been going back and forth with different doctors who also told him he was idiopathic chronic pancreatitis. Its all in his head, 2 years later we switched doctors and diagnosed him with chronic pancreatitis. He also has a high tolerance to pain, but lately things have been more worst than before. Pain comes more often than usual. He doesn't like to talk to others about pain. I have been doing a lot of research and in hope to see if things do get better or worse. good to know, he isn't alone
japaro
12 Jul 2013
Renee2017
12 Feb 2017
Hi Stacy,
I have had CP for close to 22 years now and it is very hard to find anyone who is willing to just listen. I have 3 grown kids who had to watch me suffer, as it is very hard to hide this condition from anyone. Even dating during the early years wasn't easy, but I have been luky to find a good man who tries his best to understand, but he still doesn't understand completely. Anyone who doesn't have it won't be able to. I would like to be your friend as it is very lonely going through this alone. I know how that feels too.
CatLadyLori
7 May 2017
I don't know where Stacy went but all of those stories sound like me at some point. I'd love to have someone to talk to and support each other. I've had the CP for 35+ years and I feel like I am living on the edge of a knife every day.
Cdmacp
12 Jan 2018
Hi. I had an acute pancreatitis attack 6 months ago and have not yet fully recovered. I developed pseudocysts on my pancreas. I have had an ERCP and had my gall bladder removed. Just has another cat scan and do not have the results yet. I am completely exhausted, have lost my hair and am having some cognitive difficulties. Just wondering if anyone else out there has experienced these symptoms.
Bobby JC
5 May 2017
I had my first Acute Pancreas attack in 2011. My triglyceride levels were 3200. I have had 7 attacks since with 3 of them in the past 5 weeks. My triglyceride levels 5 weeks ago were 6550. I would drink twice a week and my diet wasn't perfect but not horrible either. I was diagnosed at Beth Israel last week with Familial Chylomicromenia Syndrome. My pancreas is missing an enzyme that breaks down fats. One in one million people have it. 4 out of my last 5 attacks I haven't drank before so it's mainly from fatty foods. The doctor told me no more fried foods, fatty foods or alcohol for the rest of my life. I feel like I was handed a jail sentence. My triglyceride levels have always been high even when I fast. I am pain free for now and lost 38 pounds the past 5 weeks. I am seeing a pancreas specialist tomorrow. Wish me luck!
CatLadyLori
7 May 2017
You will decide that those foods and drinks are not worth the trade of the pain they cause. I can live without anything and have a happier life if I know it will make me feel better. Decide for yourself if that drink is worth the aggravation and pain it causes. Same with that fried greasy food. There is more in life to give happiness than those things. Being miserable isn't worth it to me.
CatLadyLori
7 May 2017
I got an email about someone new posting on here. I guess I marked it to let me know if someone responds but I can't find where I posted. Hello?! That is me. Anyway... all of these stories sound so familiar to me. I have been all of those places and have dealt with this for too many years than you want to hear. (35+) I have had all of those feelings and upsets and severe pain. We are all the same kind and we are few but we are identical. Only we can understand what each other goes through inside and out. I might have been with this for a long time but look at it this way... I am still here!
We all need to stay connected and support each other and share information. That is our best chance to get attention for this.
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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.
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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
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.
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!!
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.