Mayo Clinic Connect
After an acute pancreatitis 3 years ago, I now have chronic pancreatitis which causes a lot of pain. I’m on Jentadueto 2x/day and my diabetes is onder controle. However, I would love to hear from others with this combo problem. Thanks
I look forward to learning some more coping mechanisms.
Welcome to Connect, @ankie.
I hope you don’t mind, but I moved both your messages into one discussion thread to make it easier to bring people to your discussion, which is well suited here in the endocrine group.
I’m tagging fellow members @bethmcch @twinskl @freemary @gman007 and @rosemarya all of whom have experience with acute or chronic pancreatitis. I hope they will share their experiences.
Ankie, do you know what caused your pancreatitis? How are you managing your diabetes?
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Thank you for mentioning my bout with pancreatitis but it was short lived and was a reaction to the immunotherapy drug Opdivo (Nivolumab) which I was taking for metastatic melanoma. The pancreatitis showed up on the PET scan – luckily I was asymptomatic. After 3 mos, the PET scan was clear. My thoughts and prayers go out to you suffering from acute and chronic pancreatitis as I understand it can be extremely painful.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor
@ankie, I want to reply to you, but I am sorry that I do not have any experience with chronic pancreatitis. My only pancreatitis experience is due to husband’s recent acute pancreatitis attack due to gallstones, and the resulting gall bladder removal. Seeing his pain, makes me have greatest empathy for the kind of pain that you must be susceptible to.
To me, a medical nonprofessional, it sounds like a good thing that you have diabetes under control. Do you have any idea of what brings on an attack of the pancreatitis?
@ankie, Welcome to the site, but I am sorry that you have any need to interact with anyone on here. I was hospitalized three times in 2006 with acute pancreatitis with the longest stay being 15 days. I was soon after dx’ed with chronic pancreatitis. I have had my gall bladder removed (no relief), I have had several sphincterotomy’s (some relief for short periods), I had a distal pancreatectomy and splenectomy due to a tumor that had essentially rotted away a good portion of the tail of my pancreas and it would have been a severe bleeding potential trying to separate the spleen from the pancreas. As a result of all of these procedure, I have exocrine pancreatic insufficiency and am diabetic. I take an oral medication, long term insulin and fast acting insulin. I also take Creon 36000 x9 each day for help with digestion. My pain is controlled with extended release medication and other pain med for break through pain. I had two stents placed in my pancreatic drain duct last summer and got significant relief from pain, but the effects have begun to fade and my pain level is up substantially from last July. Nothing new as I have received relief from procedures in the past and they always fade over time and that is, unfortunately, the progression of the disease. The use of large amounts of opiates for pain have a tremendous overall impact on overall health, but pain alone can lead to insanity. I have always had a severe anxiety disorder, but that and depression have been magnified by the pain medication, pain, and simply being more isolated than I would like as I am not able to do much on bad days and right now, they are far outnumbering the good ones.
I don’t mean to paint a bleak picture as there are many things doctors have done for me that have increased my number of good days, but we just have not hit on the one that will be a little more long lasting. There is also a tremendous amount of research in the field of pancreatitis, pancreatic cancer, diabetes, etc…, and I believe the aid they can render for my problems will increase significantly over the next couple of decades and many are very close to being available now. I am terribly verbose and have likely told you far more than you ever wanted to know, so take what you need and disregard the rest. I am more than happy to try to answer any questions people who have been struck with similar issues as I don’t have many options to giving anything back.
Take care and keep us up to speed on your condition. It is certainly possible that we may learn something from your doctor(s) that we have not heard from our own.
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If I can be of any help in the future please keep me in mind Colleen.
Gary, I found out I have severe pancreatic atrophy through my medical portal records. The doctors did not tell me. I was in the hospital in Dec 2016 very, very sick. Vomiting, high blood pressure and terrible pains. They thought I may have had a small blockage. You have been through the mill with your condition. Thinking about going to the Mayo Clinic before it turns into cancer, if it hasn’t already. Any advise would be much appreciated! Hope you get better! Shirley
I would recommend Mayo or some other high volume clinic. If the docs where you are did not tell you you have atrophy and either do or don’t have a blockage, they are amateurs. That is not a slam against them, but in a rural or small metro area, they just do not see pancreatitis with all of it’s different presentations. I just had what was probably my 10th ERCP two days ago and have a stent to prevent any type of blockage. This is my fourth one and probably my last as the endoscopist feels there are diminishing returns each time the stent is placed and they can not be left forever or something called cannulation can occur. I was reading earlier today about some of the research they are doing at Mayo regarding chronic P turning into pancreatic cancer and they may be able to tell if you have a marker that would make the development of cancer likely and a way to reverse it on a molecular or cellular level.
If you think of anything else that I may be able to tell you, please do not hesitate to ask. I am always willing to share as much as I know or have experienced. No secrets among us sufferers.
Liked by Colleen Young, Connect Director, Teresa, Volunteer Mentor, Gail, Volunteer Mentor
Just want to offer you the link to appointment requests for Mayo Clinic should you decide to get a second opinion here http://mayocl.in/1mtmR63.
And now I’ll get out of the way of the discussion between you and Gary. 🙂
Godspeed to you, this info is like a breath of fresh air.. I assume, because I have Heart Failure, LVOT- LEFT VENTRICLE OUTFLOW TRACT WITH OBSTRUCTION, PACEMAKER, AMONG A FEW OTHER THINGS, SLUSH OR GALLSTONES IN MY GALLBLADDER.. (Wasn’t sure which). 73 years of age. Stay so fatigued and nauseauted for most days. When CP is severe, is this the end stage or do you know? Thank you again for the info!
Hi, @shirleys, I was tagged on an earlier post that you made. I sincerely hope that you can find a solution and comfort from your symptoms.
My own experience with pancreatitis is very brief. Husband came down quite unexpectedly and suddenly with acute pancreatitis due to possibly passing gallstone. CT and blood tests were used for confirmation. After 4 days treating the inflammation from the pancreatitis, his gallbladder was removed. He recovered and back to normal. I’ll also add that he had no other complicating conditions, don’t know how much that plays into it all. The surgeon did say that it could occur again if they did not remove gall bladder.
Do you live near Mayo? Or near another high volume institution that treats a large volume of patients? as Gary has suggested. They are more likely to have the technology and skills to assist you.
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Hi Rosemary, I live near Macon Ga. I am very seriously considering making an appointment at the Mayo Clinic. My son-in-law has liver cancer. Mayo is having him to go through tests for three weeks to see if he is eligible for a liver transplant. My daughter is very impressed with the Doctor's and staff… As for me, I think the doctors here really don't want to suggest doing anything for me. Can't understand why they won't discuss the problems with me. My portal said I have type two diabetes without complications. With out the medical portal, I wouldn't have known that. Enough about me. Glad your husband is doing good.
Thank you. This is the first group session I have ever joined. Thanks to all!
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Sent a request . thanks.
@shirleys, I can see that you are already familiar with the excellent treatment provided by Mayo! I can assure you that at Mayo, nothing is overlooked! Once during my early care, I started to say something, then I stopped because my doctors at home shrugged it off. But my doctor at Mayo asked me why I stopped, and he encouraged me to continue, afterward he nodded and seemed appreciative to get another piece of ‘my puzzle”.
I am very happy that you have connected with us here on Connect. Primarily for yourself, – but also (for my own personal reason) because of your son-in-law – I am a liver/kidney transplant recipient of 8 years. I transplanted at Mayo Rochester. I was transferred there out of ICU in KY when my I needed the specialized care that only Mayo (in this case, a specialist in Rochester) could provide to me. I sincerely hope and pray that your son-in-law will receive a successful testing process, and/or treatment that will make him eligible to proceed toward a transplant. When the time is right, I invite him and your daughter, and you to join me and others in the Transplant Discussions and Transplant Pages for information, and for sharing and supporting.
@shirleys, I hope for you to get the very best care that you deserve. You will be in my prayers. Let us know what you find out. And in the meantime, we welcome you continue conversations.
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