Diagnosed with diabetes after acute pancreatic attack; now chronic

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?

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.

@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?
Rosemary

@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.

Gary

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.

Godspeed, Gary

Hi @shirleys,
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!