Chronic Calcific Pancreatitis
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In 2009 I began to lose weight. Everything that I ate went straight through me. My stools were very foul smelling and floated. The teaching institution in Birmingham, (UABH) where I worked as a Cardio/Thoracic RN is one of the best in the country. My Dr. ran every test imaginable on me and all of my blood work came back normal. The CT and MRI were unremarkable as well. Finally I saw a GI Dr. who did a EUS on me and repeated the CT scan. The ultra sound showed that I had gallstones as well as something questionable in my pancreas. I was somewhat afraid because I lost my dad to pancreatic cancer at the age of 59, and his mother passed from complications secondary to Pancreatitis. They attempted to do an ERCP (Endoscopic Retrograde-CholangioPancreatography) on me but was unable to. I had 4 stones embedded in the head of the pancreas, and one 8mm one obstructing the main pancreatic duct. No enzymes were making their way to my small intestines to break down fats, protein, carbs etc. The stone was just too large to remove. I saw a surgeon who recommended that I have what's called a Whipple Surgery. I want go into detail about this type of surgery other than to say it is extremely radical and includes the removal of part of the stomach, small intestines where they have to bypass part of them and join them to the pancreas, transplant islet cells, remove the gallbladder, spleen etc. at times. I had a friend who I met back in the 80's while doing his residency and knew that he was head of the department at the Mayo Clinic in MN that specializes in lithotripsy and ERCP. I told the surgeon that I thought I might be a candidate for it and he adamantly told me that I wasn't. I called my friend at the Mayo nonetheless and he asked that I send my films/records. About a week later he called me back and said he thought that he could help me. I booked a flight to Rochester and flew up. On a Monday they did lithotripsy to the stone in my pancreas. After three hours the Dr. was about to give up and the tech doing it asked him to give her 15 more minuets. After 3 hours and 10 minuets the stone finally shattered. Afterwards I felt like I had been kicked in the stomach by a horse. The next day they did an ERCP on me, removed all the shattered fragments and put in a temporary stint that would dissolve on its own in a month or so. Before all of this I was taking 30 plus Creons (enzymes) a day. 4 before each meal 2 during and 4 afterwards, and with snacks. I regained the 50 pounds I had lost in no time and after the lithotripsy and ERCP never took another one. 17% of people with chronic Pancreatitis doesn't experience much, if any pain. Luckily I was one of them. I have occasional flareups but never severe enough to be hospitalized to treat the pain. I think I've taken two rounds of a weeks worth of Dilaudid and that's it. PLEASE get 2 even 3 different opinions and ALWAYS follow your heart. Had I had that Whipple Surgery I honestly don't know where I'd be today. And, had I not been an RN and knew of this alternative procedure I doubt I would have ever had it. Dr's and surgeons don't know everything. Even though many feel they do. I still have 4 stones in the head of my pancreas that they check with an MRI every six months and monitor my enzymes. My chance for developing pancreatic cancer went up 20 to 40 fold given my Pancreatitis and my family history. But, its seldom that you will catch your enzymes go up because when they do spike, it's only for a very short period of time. Many people think that elevated enzymes is what you will see in both acute and chronic Pancreatitis and this is not always the case. Fortunately the 4 stones that are still in me have not grown in size or migrated. If you suspect that you might have Pancreatitis, do your homework, educate yourself and ALWAYS get a 2nd, even 3rd opinion. If your case sounds anything like mine, check into having lithotripsy and an ERCP even if one tells you that you aren't a candidate. And, make sure that both your endocrine and exocrine functions are indeed functioning correctly. Monitor your glucose and have your A1C checked at least twice a year. Good luck to all of you. I hope that you will share your stories here and give everyone some helpful tips/info to go by.
All of you take care and stay well!
DJ~RN
0 likes, 2 replies
Reefsider DJ-RN
Posted
Thank you for sharing your story and knowledge DJ-RN.
It's unfortunate that most don't have the knowledge or access to the expertise you had but I'm glad you did your homework and made the right choice for you.
I think many of us find it frustrating that we can't get the answers we want, or even know the right questions to ask much of the time.
I don't know if specialising in all things pancreas is particularly boring but it does seem that there are few gastroenterologists specialising in the pancreas with most gastro's having little knowledge beyond the general which doesn't help us much.
It's tricky too depending on the doctor's ego, and schedule perhaps, whether an individuals research/self education will be acknowledged let alone discussed.
Finding a specialist gastroenterologist is the best first step as they should be abreast of the latest thoughts and procedures one would hope. My guy is good but as time passes I can see he's under increasing pressure and time spent with him is less productive than it was a year ago. We need more gastro's specialising in the pancreas, how do we make it sexy haha.
DJ-RN Reefsider
Posted
Hey! Nice to hear from you. You are right. There seems to be a shortage of specialists who concentrate on the pancreas. They're few and far between. I was indeed lucky that I had what knowledge that I did, or things might have turned out differently. I wish you well.
DJRN