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
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.
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...
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.
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
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?
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.
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 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.
If you still are looking for someone to talk to, I'm available.
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.
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 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 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.
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