I have had two hospitilizations with acute pancreatitis, and now it has become chronic with multiple cysts encased in fibrosis.
I just joined the site. I’ve had rounds of pancreatitis for a couple years now, and have been hospitalized for it 3 times. At first they thought mine was gallstone pancreatitis but I have had numerous rounds of it since having my gallbladder removed. The doctor I’m going to is one of the few that accept my IowaCare insurance and when I asked him what I can do to prevent more flare ups and to control the constant nausea and frequent pain his only comment was that I am just too fat and that I need to loose weight and that will take care of all my problems. I have never been an alcohol person so mine can’t be caused by that. I have no idea what to do because I asked the doctor to help me with a diet plan for eating low fat foods, and he wasn’t helpful then either. So I’m glad to have found this site and am hoping that everyone else on here has maybe found some ways of coping that I might not be aware of.
I recently went to the ER and was told I had acute pancreatitis caused by alcohol. Was in hospital for 9 days. I also developed a large Pseudocyst (10 CM). I was sent home and will go for a CT scan soon to see if the Pseudocyst resolved itself. I have not had an attack since coming home (3 weeks). On a low fat diet and quit alcohol completely. Does anybody know what the odds are of me getting chronic pancratitis/ or not?
My daughter has been sufferring with chronic pancreatitis that had gone undiagnosed for five tears, and now that we know what it is, there doesn’t seem to be any way to help.
baldridd22, Hi, I have sphincter of oddi disfuction and the Dr made a cut to open it. That helped for a while but I have gone back to having pain on a regular basis. The Dr has suggested running a tube from my pancreas to my small intestin. Is that the whipple that you had? Can you tell me about it and how you felt afterwards? I would appreciate it a lot. Thank you and I hope you start feeling better I know how depressed it can make you feel. gailin
I am a nurse that specializes in caring for patients with pancreas diseases. I am very interested in hearing patient's experiences managing enzyme replacement therapy and tips for dosing with meals. I am also interested in patient's experiences with yoga or physical rehabilitation activities as an adjunct to pain management therapies.
Betsy S.
quyen, I understand. Not your diabetes but the pancreatitis yes. Mine stared the way yours did and they took my gallbladder also. I guess I just wanted to let you know your not alone. Take care, galino
Hi. I’m a 42 year old female who has been diagnosed with recurring acute pancreatitis. Had a whipple 5 years ago, precancerous. No pancratitis until a surgery last year for bowel resection. Now I can’t get rid of the pancreatitis. I had it for 7 months in 2012 into 2013. Had a good 2 months and here come the symptoms again. My fist attack was right after taking Welchol for chronic diarrhera. I was hospitalized 6 or 7 times last year. I continue to eat through my attacks, while not in the hospital. Mostly rice, pasta, boiled chicken. It hurts to eat but I am hungry even with the pain. It oculd be the blandest of food and it still hurts. But having pancreatitis so long, I have to eat. I do yoga on better days, which helps the rest of my body feel good. But on bad days, I’m not moving at all. I get my heating pad, pain meds, and curl up in a position that is most tolerable for the pain.A stent has been discussed but with the whipple rearranging my digestive track, the doctor recommends this as a least resort. After reading the statistics…I agree. So this is me and this is what I am suffering from and I really don’t know how to control it. Doctors mostly give me nutritional advice and meds but not much else. Apparently this is something I have to live with.
Greetings . . . Thanksgiving a year ago I was rushed from my family care physicians’s office by ambulance with a heart attack scare. Ended up having stones i my pancreas and gall bladder, server stones and infection. I was told my pancreas was removed and a stent inserted for blockage. Since my gall bladder was so infected, I was put on oral antibiotics that counteracted with my thyroid & bipolar meds and I went bizerk! Since the hospital I was in did not have a psy facility, I was police escorted to a Psy Hospital. What a nightmare that was. After 2 weeks I was released with 6 additional meds. For almost 1 month I was sleeping my life away and feeling extremely crazy, out of sorts, not knowing which end was up, literally crawling to use the bathroom. I prayed my socks off, literally, and stopped taking ALL meds except thyroid. I DO NOT recommed anyone to cold turkey psy meds. Finally, after 6-9 months, I was able to think more clearly and function better. I have been on one psy med after another for almost 35 years, and acting crazier with each new med. Im a very stubborn senior citizen, living alone, finally happily retired. You see, God answers my prayers, yes, no and wait. Believe me, it’s in the waiting where I grew and learned and searched His Word and listed to His small still voice. He works in mysterious ways and when I allow Him, He always puts the people, places & things in my pathway. It’s not easy, thinking I can do this recovery program myself, but He’s always there to guide me and help me and get my attention to getting back on track. I feel like I’m ambling, sorry. Yes, I have days of severe pain and frustration from the usual stresses of life, still cleaning up mydamages from Hurricane IKE 2 years ago. as anyone out there also had a stent inserted for pancreatic/gall bladder blockage? I’m a very healthy eater and walk the days I’m not in pain, this helps control my life. Hang in there everone, today I have more good days than bad . . only when I trust in the Lord! Much love & blessings to all. I’m available if you want to chat. Pattyann in Texas.
I was diagnosed with CP 3 years and 4 doctors ago. I finally found a GI doc who is treating (at least) my chronic pain although he is woefully uneducated in CP problems.
I am always nervous that he is going to stop treating me as the state in which I live is so freaked out about opoide abuse. The three docs that I saw previous to him treated me like “dead girl walking.” Their responses to me ran along these lines: You have chronic pancreatitis, stop drinking, no, we don’t do pain meds, come back and see us next month. That is it.
No treatment suggestions, no meds, no talk. This, after I told them that I no longer drink.
One thing that I have found in all of my research is that the AMA and most state medical boards consider you an addict if you have CP and you ever drank. and if that is the case, being an addict, you can’t be treated with opoiodes because you will become addicted to them. It is a terrible circular argument that is completely unfair. At least in my case, I am not being treated like an individual. Something happened recently that has made me very nervous about the doc that I am seeing. The insurance co. took vicodin off of their formulary and the price quadrupled. This was after I got a call from a company associated with the employer and insurance co. that was very threating. They accused me of being an alcoholic and of using the vicodin in place of alcohol. they didn’t believe that I could quit drinking without going to detox and AA, apparently. This has gotten me very freaked out.I do not know what to expect when I see the doc this week. I am hoping that he doesn’t dump me out of fear. I have read a lot of responses on this site and no one seems to have had a problem with getting pain meds. Is it just me? Toni
baldridd22 thanks for the information. No I’m to have the Puestow procedure. I’m sorry for the confusion. The Whipple procedure just sounds so serious. I hope you are adjusting better now. It sounds like you have been through a lot. I’m fifty nine and I don’t know if I could go through what you have. Thanks for letting me know though. galino
AngieF, Hi, I’m glad to meet you. The ERCPs that I had were like an endoscopy if you have had one of those. But if not I’ll let you know that it is simple they put you to sleep and then you wake up, maybe with a slight sore throat. If I had not had mine they wouldn’t know that I a sphincter of oddi disfunction. They sliced the sphincter so it could stay open and that gave me some relief for some time. Hopefully if you have it done they my find out the cause and better know what to do to help. Take care and let me know. galino
galino & baldridd22, this sounds all to familiar & I'm sorry for your pain. I've been dealing with pancreatitis for 15 months now. Diagnosed last spring with recurrent acute pancreatitis, had my gb removed last June to no avail. I've prob been in the hospital at least 30 times in the past year. Made it 2 months (record for me) without having to go in until last week when I had another attack at work and went straight to ER. I don't have a local GI because was having trouble finding a good one in my area so have traveled to Seattle to Virginia Mason and they are wonderful, but cannot afford to keep going over there all the time so my dr. is referring me to another local one & I really hope they are helpful. I feel like this is something that is just always going to be a problem, no matter what I do. I have radically changed my eating (pretty much vegan at this point, except I can still at chicken, I take Creon before every meal, religiously watch my fat intake and never touch alcohol. Still daily pain and nausea. Don't really know what else to do except deal with it and that it really hard. The only thing I haven't had done is ERCP because I'm really scared of the risks, but the nurse in ER last week was saying she has assisted on a lot of them & worst thing that will happen is it will cause pancreatitis & I already have it so might be worth a try in case they can put in a stent and give some relief between attacks. I don't know what to do, would love input on ERCP experiences. Good luck to all.
Hello,
I am 50 yrs. old and have had chronic pancreatitis for about 10 years now. I have had many ERCP’s, stinit in, celiac plexis block, been on oxicontin, neurotin, and others, am currently taking morphine every 8 hrs with percacet for break through pain.
I have done a lot of research on this horrid disease on pubmed.gov and other sites and books. I decided to try the anti oxidant therapy, have been doing it for over a year now and have been able to really reduce the amount of meds I have been taking. Lately, however I am having severe nausea daily and the pain is getting stronger. Went and got new blood work, doc says its fine continue with your meds!
Grrrr… I am so tird of the medical community not having a clue as to what we deal with. They think you are not in as much pain as you are or I have had friends been accused of drug seeking, (thank God, I haven’t had that problem) At his point I am really thinking about having a consultation for the TP/AIT surgery.
I have talked to many who have had it and though it is a very big surgery and the recoup time is a year to get back 100% I am thinking it might just be worth all the pain and time to have a “normal” life again.
I highly suggest if you have CP or AP thinking about getting on a VERY strong anti oxidant, go to pubmd.gov and look up pancreatitis/oxidative stress, it does help and oxidative stress plays a big role in this disease and many others! Wishing all of you a pain and nausea fee day!
Galino,
I did have the whipple procedure 5 years ago for a precancerous tumor. It's a tough surgery but I was relatively young when I had it...36. That surgery changed the way I eat forever but it enforced a healthier lifestyle. I was back to work part time after 6 weeks but I remained lethargic for months and months. Forget dairy after the surgery along with deep fried food. I also have dumping syndrome as well. It wasnt until after the bowel resection that the pancreatitis kicked in.
Has it been suggested you have the whipple?
I’ve had bouts of pancreatitis for seven years. It started with pain under my left ribcage and after two ED visits they found inflammation of my pancreas.
At that time my lipase was only elevated and not that much. During my hospitalization the also ran tests on my gallbladder and it was not working so they removed it. After my release things just got worse in that I had pain on a regular basis and was admitted to the hospital several times before being referred to IU ERCP.
They performed an ERCP and check some levels and also found a lot of irritation in the head of my pancreas. I ended up returning and they repeated ERCP and did slice my SOD and found further inflammation now into the body of my pancreas. I have had two celiac plexus blocks, the last one two weeks ago.
Last Wed. I had to go to the ED again because of the pain. My GP now thinks that I don’t have pancreatitis because every thing she read in the report from the celiac block was normal with stranding stated as equivical for chronic pancreatitis.
I have an attack ever one or two weeks or more and now my liver enzymes get high too. My lipase and liver enzymes never get extremely high. So after last Thursday calling IU all day and already having blood work and x-ray and visit with my GP. IU finally calls me at 5:30 to tell me to just go to the ED that my Dr is gone for a funeral.
The bad thing is the hospital where I work is an hour away and IU is two hours away. Anyway the ED helped out a lot and I’m felling better but I am so tired of this. I have changed my eating habits do not smoke or drink but I am still in some kind of discomfort everyday.
I feel like people don’t believe me my GP questions it and my sister won’t speak to me because I take pain medication and she thinks I or anyone who takes it is an addict. She is a nurse! I need some encouragement and hope. I have read your stories and feel like my stuff is minor. I need to know I’m not a hypochondriac.
I wish there was some information out there to pass out to all these so called health care providers that updates the new advances in treating this disease. Not so sure the GP or ER professional is up on it, thus perpetuating the never ending ignorance in treatment of patients. CP can cause depression, ignorant providers perpetuate the depression along with the pain.
I am 52 years old and have had Chronic Pancreatitis for almost 9 years. I developed Acute Pancreatitis suddenly and the Pancreas got infected, spreading to multi organ shutdown and a stroke resulting in 40 days in ICU.
Many times I was close to death and even with emergency surgery to do a resection of part of my intestine that died, the prognosis was not good.
All together I spent 100 days in the hospital. Since that time I have had what one doctor calls a “stormy” health history. Part of this is becoming a Diabetic, 3 other bouts with AP and, of course, CP since the onset. The doctors say I am in that 20 - 30% of the people that are they don’t know what causes it.
That doesn’t help much to know what you could do to keep a flare up from happening. The CP causes constant pain and is a major challenge all the time and a major life changer. One of the largest problem I face is that people think I am healthy because I look fine. I am not one to linger on what is happening with me and try to carry on as normal a life as possible, without filling the world in on what is happening with me.
I have always said that if I had Cancer it would be easy for me to say what is wrong with me, not that I would choose to have Cancer. But CP is not the easiest thing to tell people you have. I still have 2 family members that I haven’t been able to bring myself to tell about it. It is very rough, there is no way that you can start to understand the pain issue and the shortened life expectancy isn’t easy either.
I have been trying to avoid the internet thing of getting overwhelmed with info. and not sure what is right or wrong, but this is getting to a point that I think I could really use some support from people that have a clue what it is like to live with this terrible disease. Thank you all for having something like this to turn to.
Hello,
I’m 39 and have been dealing with CP for 2 years. My trial started in 2012 when I was prescriped a water pill called hydrochlotiazide (hctz).
I spent 1 week in the hospital and was let go. I thought that that was it with the problem. Then I started having stomach pains that I never had before. I went to my PC every month serching for help. All he told me was that maybe I had indigestion and was told to take some mylanta or pepto.
I started suffering more and more as the days went by without knowing what was wrong with me. The pain was so intense that my husband started making me go to the ER. Once at the ER I was told that maybe I had IBS and they gave me some meds to treat that. I was at my wits end and did not know what to do. Finally the pain got so bad that I refused to except my previous diagnosis. I went to turn myself in to the ER one more time and they said the same thing IBS, I said BS! I had been suffering for a year running back and forth from the PC Doc and the ER.I’m going to a different hospital.
My urine looked like carrot juice and I had not eaten anything in about 4 days. As I was leaving, the ER Doc goes, “tell them that your LFT’s are high”. I had no idea what and why he said that. We left and went to the University of Minnesota. Once there in the ER they told me that I had acute pancreatitis and that my liver was in distress. I was admitted and my stay was for 1 and 1/2 months. Long story short, I found out that the first time that I had pancreatitis that I now have pancreatitis! In April of 2013 I went to a specialty doc and he put me back on hctz.
I explained to him that I was told that I was told that the hctz caused me to have pancreatitis and that I might be allergic. He said that they could not prove that it was hctz that caued the attack. I told him that I was afraid to take that med and he reassured me that I would be ok. He went to the length of getting his deptment head to reassure me. I reluctanly started taking the meds and ended up in the Er with a severe attack. Since, I have spent 7 months in the hospital, had 4 ERCP’s and a GJ tube. I have not found anyone on here that has a feeding tube.
I have had it since June 2013. I have pain management, physical therepy, and psy pain management. My pain is maintained at 4-5 daily. I was told at the begining of my treatment that I was disabled and finally learned about what was going on with me. I am still learning and am glad to have support groups to turn to.
Thanks for being here, it feels good to be able learn about this disease from people that are experiencing it from my perspective.
It is very important to engage with a Pancreas Center near you that offers specialty services by Pancreas experts in Emergency Care, GI Medicine, Pancreas Surgery, Imaging, Endocrinology, Pain Management, Behavioral Medicine, Genetics,as well as a center that offers Total Pancreatectomy with Auto Islet Cell Transplantation.