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 by Nardia
I have kept everything to myself and it's so depressing and scary to feel alone.i have had it for about 5 yrs well that's when my aganizing pain was diagnosed... I would love to be able to talk to someone who I feel comfortable talking with, I have so needed to let it out , it's bottled up , I was thinking about taking to a therapist, but I'd love to talk with someone else who really understands so we can talk together with comfort... Stacy I would love to talk with you, I understand feeling lonely .
Hi Stacy 365:) I have chronic pancreatitis and it is the worst! Only had one acute attack that felt like someone put hot coals in my stomach and it was a nightmare. Thank God that only lasted a few hours. Anyway, after having a EUS they found that my pancreas was shot. I had lost 30 lbs and was in severe malnutrition mode. I was so bad that my muscles were twitching all over and I thought the end was near. Drinking was also not the cause of my pancreatitis, AND I AM SICK OF HEARING PEOPLE SAYING IT! This runs in my family. Anyway, I hope you're doing ok and there are a lot of people that know what you're going through and have your back! Take care, John
Oh wow!!! This is exactly what just recently happened to me. I do not drink either. I have been having for years a little pain on the right side that after a zillion tests, no one could figure out. Last September a DR thought maybe I had a stone on the biliary tube and suggested an ERCP. Well, it caused a massive severe acute pancreatitis. I was in the hospital for a while. I had necrosis caused by the pancreatitis and Within a month I had the pancreas scared. 2 months after, EPI & Chronic pancreatitis and are on Creon now. This is all new to me. Every time I eat it hurts. And it scares me because I think my pancreas is further getting damaged. I have been so depressed.
I get it, and it's terrifying. I hope you are all well.
Wanna start off with, I've never been a drinker, much less a heavy drinker. Complete Dr. Dick question.
I first got pancreatitis in 05'. I was put on Creon. Which helped, then on her the years with insurance changes and thinking I was better. I've been hospitalized approx. 15x in the last 15 years. In the last few months I've been put on insulin. I no longer get pancreatic pain. Just pressure. So just more not knowing. On one hand I hope I'm over reacting on the other the term end stage pancreatitis terrifies me. I have an 18 yo, 15 yo daughter, and 7 yo son.
I'm surrounded with love and family, but I'm 2yrs out of an 18yr old marriage due to my medical problems.
I just can't talk to people that worry about me. Cause it just gets old AF for them.
Hell just posting this help.
hi stacy id like u to have me to talk to i have chronic pancreatitis and i dont drink and im in hurt costantly so i know where u come from there is some one out there to let u know ur heard keep in touch god bless u
yes i do
Hello, I have started having pancreatic issues, I did a lot of research that shows Black Seed Oil/ Powder mixed with honey helps. (you should google it)
I also stopped any sugars including fruit and went mostly carnivore diet. It has helped a lot
Please let me know if this works or helps with your pancreas issues
Good Luck, and please pray for me
I don’t know if this will be of any help, but it’s part of my story and advice based on my experience.
I’m 57 and have been “fighting the good fight” for ten long years of chronic pancreatitis, and it’s helluva ride, so hang on. First, you’re not alone, support groups like this are a great resource, and that’s what I’ve found most important, develop your resources. If you have a spouse/partner that’s good , but don’t depend or overuse that person. My wife finally got overwhelmed with a full time job at work and my needs, and frankly, my demands all got to be too much. Do as much as you can for yourself.
Next, find a good doctor, other than your pain doctor. Those guys are in the frying pan and afraid of the fire with all the politics of opioids in the current political climate. It’s going to happen, you will at some point need another good pain doctor, and it sounds like you need one now. Start with your family doc, or your GI doc. Patients that are referred by another doctor get taken much more seriously, and your help will come sooner.
Learn to play in the game you’re in, and the umpire is crooked. You need decent pain control, and no-one is going to give it unless you’re willing to understand and play by the rules.
Go online, and read every single review about every single pain doctor in the area. If you can find someone with better than 50% positive comments, ask your doctor to refer you to that person. Get a morning appointment and be early to your appointment, you might get seen sooner. Pain patients are often late, so you might get in to see the doc while he still has time to talk. They’ll have a bunch of forms to fill out as well. Don’t call and ask for extra appointments when whatever he gave doesn’t work or runs out early. That’s what drug seekers do. Be nice to everyone that works at the pain doctors office, you never know when the snooty receptionist might be able to squeeze you in when you need it, so be nice to her. Ask her about the picture of her kid she has taped to the computer screen, or something personal. And if the doctor is a dick, come back for at least one or two appointments if he’s writing you enough meds. If he’s not the guy, then keep looking. You might have to drive an hour to see the right guy, that’s why he’s got room for you, he’s outside the area.
I was seeing a “chronic pain” therapist for a long time, and I’m thinking it’s time to go back. She was absolutely my best resource when it came to who the “good” pain doctors are in the area. She knew a lot about which drugs would work and what doesn’t. The right hospital to got to when your pain gets so bad you need more help. She’ll know about any local support groups that are actually functioning and helping. Lots of those get started and then fade away.
Learn as much as you can about every part of the problem, not just pancreatitis, but chronic pain in general, and pain medications specifically. Some work great for one guy and not so much for you.
Lastly, learn to be patient with family and friends. They don’t and never will completely understand why you don’t just get better. We’re living in that middle ground between sickness that gets better and disease you die from. You’re never going to get better, you’ll have good days and bad, and they need to understand that just because you’re ok today doesn’t mean you should sign up for the family cruise vacation to Alaska. Keep your commitments small, and their expectations small.
And let us know how you’re doing, you never know who it might help. Bad days seem like they’re going to go o forever, and so do the good days.
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.
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!
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.
If you still are looking for someone to talk to, I'm available.
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.
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...
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.
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