Some friendly guidance needed please.......
Posted , 4 users are following.
Hi, have just joined the group so am very new to this and would be very grateful for any help/information that's out there.
I won't bore you with all the details at this stage, but I had a MRI scan which showed a large stone in the central section of my pancreas along with a few smaller ones, also the head and tail of my pancreas are virtually dead. I have never been symptomatic of pancreatitis, i.e. chronic oily loose stools, attacks of pancreatitis etc., so am wondering if there is anyone out there in much the same position that I can bounce some questions off as there's practically nothing on line about pancreatic stones (my gall bladder is absolutely fine), am currently taking Omeprazole, Ranitidine & lots of Creon 
but still can't put on any weight at all!
I do appreciate I have left a lot of my medical info. above out but would be happy to fill in the bits and pieces if there's anyone in my position that I could "talk" to.
Thank you all.
Val
I
0 likes, 3 replies
DJ-RN seafood
Posted
I can relate to what you're going through. In 2009 I began to lose weight and soon I went from 168lbs to 120lbs. Everything I ate went straight through me. I went to some of the best specialists at the teaching institution that I'm a cardiac RN, and no one could find out what was going on with me. I had every test imaginable and still nothing. Finally I saw a Dr. who repeated another CT scan on me and told me that he saw something in or near the pancreas. I lost my father to pancreatic cancer when he was 59. They also did another ultra sound and found that I had gallstones as well. I went ahead and had it removed but was still up in the air with my pancreas. Finally they did a EUS on me and it showed that I had 5 stones embedded deep within the head of the pancreas. One however was 8mm and was totally occluding my main pancreatic duct. They tried to do an ERCP on me (endoscopicretrograde cholangiopancreatography) but the stone was too large to crush and remove. I saw a pancreatic surgeon who said that I needed a Whipple Surgery. I want go into the details of this surgery and how invasive it is other than to say it's very radical and where they remove the head of the pancreas, remove some of the stomach and small intestines and bypass some of it along with the removal of the spleen etc. I told this surgeon that I thought that I was a candidate for lithotripsy they do on kidney stones, but a few places were doing them on the pancreas followed with a stint placement then an ERCP to remove the shattered fragments of the stone. He said that I wasn't a candidate. I learned that a very good friend of mine was head of that area in GI at the Mayo Clinic in Rochester MN. I called him and he asked that I send my films and records and he'd see what he could do. About a week later he called and told me that he felt that he could help. I booked a flight from Birmingham to MN and flew up. The first day they did lithotripsy on my pancreatic stone. After 3 hours they still weren't able to shatter it. Right before they were going to quit, the tech told the Dr. to give her 15 more minuets. By the grace of God it finally shattered. Afterwards I felt as though I had been kicked in the stomach by a horse. The next day, the Dr, Todd, my friend did the ERCP on me, inserted a stint that would dissolve on its own within a month and then he removed the shattered pieces of stone. At the time I was taking 8 creons before, 6 during and 8 more after each meal and 6 with each snack per day. After he reopened the flow of enzymes through the pancreatic duct, I never took another Creon thereafter. 17% of people with Chronic Calcific Pancreatitis doesn't experience pain. I happened to be one of them. I've had a couple of painful flare ups over the past 6 years but I was never hospitalized. I was just given a week or so of Dilaudid and I only drank clear liquids.
No matter how much you like your Dr. please always get a second, even a third opinion and ALWAYS follow your heart. Had I not been an RN and knew about this type of procedure, I don't know where I would be today. Within 4 months I gained all my weight back and have not had any problems for the most. It's nearing 7 years now.
I will always have Chronic Calcific Pancreatitis. There is no cure. And it is a slow and progressive disease. Since my father died with pancreatic cancer, and his mother from complications of Pancreatitis, my chances of developing it has increased 20 to 40 fold. But, they watch me closely and I have a CT or MRI done every 6 months. As far the other 4 stones that remain in the head of my pancreas, they have not changed in size or location. There's a good chance one might move and reocclude my main pancreatic duct, but they haven't as of yet. When or if they should I'll cross that bridge when I get there.
If anyone would like more info, or names and numbers, or if you have any other questions that may help you, shoot me a prvt msg. I'd be glad to do anything that I could to help you.
NEVER give up and again, get 2 to 3 other opinions and ALWAYS follow your heart.
DJ~RN
seafood DJ-RN
Posted
Hi, thanks so much for getting back to me and I'm really glad all worked out well for you, although by the sounds of it it sure wasn't plain sailing - you are one brave person, especially with your sad family history of pancreatic problems.
I'm guessing you've probably heard the UK health service is in a "difficult" situation at the moment and it truly terrifies me to think of actually being admitted for treatment. I think the thing that makes it so difficult for me is that I have no pain at all and infact the pancreas problem was only found by accident during a scan following gastroscopy for an attack of severe acid gastritis, which the PPI's have now cleared up. It was during the gastritis that I started to lose weight, only because I couldn't eat because of the hyperacidity.
Following the scan I was referred for an MRI of my pancreas and it was this that confirmed the large stone lodged very comfortably in the central section of my pancreas with the other smaller stones in other locations. A fecal elastase test confirmed my pancreas was all but not functioning as far as enzymes are concerned but is still happily producing insulin, so apart from the exocrine pancreatic insufficiency and the total inability to put on any weight at all (but interestingly I am not losing weight so guess the Creon may be doing something), I am well but a bit on the tired side due I suppose to my lack of absorption of my food, also I have never had an attack of pancreatitis. My biggest problem is that I am taking large amounts of Creon since November 2016 along with the PPI's (Omeprazole & Ranitidine) but absolutely nothing is working as far as weight gain is concerned, I am fortifying all my food with milk powder and cheese, drink full cream mil/milk shakes, eat full fat butter in sandwiches & cooking, jars of peanut butter and everything we have always been told is "bad" for us but my goal of 8st is still far in the distance.
I think your point of getting a second opinion is a good one, the doctor I saw at the hospital told me "never let anyone attempt to recover that stone as it will do so much more harm and damage than good" and it is this that keeps popping up in the back of my mind. I guess my big question that I want to ask but don't necessarily want to know the answer (if you know what I mean) is what happens if the stones are left in place?
Thanks again for your time, it was really nice to hear from you.
I have just had a series of blood tests done as they have now found I am anaemic but the dietitian who is looking after me is pretty well convinced its because I am not absorbing my food, so vitamins and minerals are being lost.
DJ-RN seafood
Posted
You're welcome. Do I have this straight, you have a stone in your main pancreatic duct that's interfering with the secretion of your pancreatic enzymes? If so, have they suggested that you have lithotripsy to shatter the stone, then an ERCP like I had to remove the fragments? I still have four stones in me, but they're not giving me any problems. I'll always have Pancreatitis. That's of course what Chronic means. But thank god I'm stable. I hate you're on so many creons. I was on up to 35 a day. If you're not gaining your weight back, you may want to ask your Dr. to increase them. I gained all my weight back when I was put on them. I too only had exocrine problems. I've had no endocrine at all. My glucose A1C is good.
I take it you are in UK? I'm in the states. If you're having problems gaining weight I have a definite fix for that. I drank VHC (very high calorie) drinks by Carnation that comes in little 6 ounce cartons. Each drink (French vanilla) I liked, has 675 calories per 6 ounce drink. It will put the weight on you and are very nutritious. If you prvt msg me, I can give you the info to order a case of them. I regained my 55 pounds back in no time. I feel sure they would ship to you or might have a U.K. location. I'm telling you they work and taste great. You cannot buy them in any stores due to the high calories.
Have you had or heard of ERCP? Are you a candidate for lithotripsy?
DJRN