Idiopathic Chronic Pancreatitis and Severe Depression

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This is my first post and not sure where to start. I guess from the beginning. In 2010 I was an athletic gym nut. Trying to be in the shape of my life. 32yrs old Weighed in at 168 and was truly cut for my 5'11" height. After doing some much needed repairs in the bathrooms and refeburshing it I became ill.  Dropped from 168 to 148 that month.  I had told the docs numerous times. I told them that I though the mold had made me sick. I felt pretty ill shortly after the remodel and ended up in the hospital with acute pancreatitis. At that time in my life I still drank but was not an abuisve alcoholic. However I drank a lot in my 20s.  Soon the visits to the hospital became consistent. And nightly stays where common. I would have a few years of feeling better and only having a couple attacks. But within those times the pancreas became more scared and soon was diagnosed with cp. as well my autoimmune test came back a false positive and chrons came back 4 of 5 positive. So now today 39 turning 40 just taking enzymes I have finally reached a point of losslessness and helplessness. My depression has only become worse and my pancreas has become unbearable. So I'm loss. I see the doc next week. For my 4 month follow up. I'm down to 147lbs and my stool movements have not been stools. I have had to clean the toilet the last 3 days due to my stomach digesting. Guess I just blabbing on. Thank you for reading this. I'm out of options it feels. 

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  • Posted

    I also was diagnosed with idiopathic chronic pancreatitus last year. I am a senior so I thought I was having a heart attack. I had severe pain in my left shoulder, down my left arm and the left side of my face. My heart was fine so the ER doc. Decided to do some extra blood work. My lipase was at 1500 an I was overnight. I couldn't understand why they wouldn't let me have anything to eat.

    I have had MRI's,cat scans,etc. I have to admit when I got the diagnosis I started to feel depressed also. I decided to go for a second opinion and I was a little more relieved as the second doctor explained more and gave me a different perspective. Since my diagnosis I always feel uncomfortable, only have had one severe attack recently. I am trying to stick to a low fat diet and don't drink alcohol at all. I never drank very much anyway so it wasn't difficult to quite. I was 115lbs and dropped to 102lbs. I drink Boost Hi protein as I am trying not to eat red meat. They do have medication that may help, but that would be your choice. I would stay on this blog as we are all in the same boat trying to deal with this horrible disease. Sometimes it helps to be able to vent and know you are not alone. Wishing you the best.

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    • Posted

      Thank you Judith for your response.  truly appreciate your post. I know I'm not alone but sometimes it gets to a place where I do feel isolated on my health. All my best and thanks again. 

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  • Posted

    Hi Joe I got diagnosed 3yrs ago I was alcoholic not drunk for 3 years I have depression with the pain and also got diagnosed with prostate cancer at the same time I'm ok now with the PC got it in time I got CT scan done last month and have cysts and a gall stone blocking my duct I'm on morphine 60mg tablet and oramorph it's doing the pain quite good I also take creon and sickness tablets I got appointment with my pancreas Doctor next week to see what they are going to do . Joe i don't know if you know about the other group on Facebook called crohnic pancreatitis UK it's a really good group where everybody talks and gives good information about crohnic pancreatitis so Joe I hope you keep well and talk to me anytime

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  • Posted

    I'm sorry you are having all of these problems. I can relate to you. I too have Chronic Pancreatitis but seldom do I have pain.  I happen to be 1 in 17% who experiences little or no pain. 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. And his mother, my grandmother to complications related to Pancreatitis. They also did another ultra sound and found that I had gallstones as well. I went ahead and had GB 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 balbaric to many where they remove the head of the pancreas, remove some of the stomach and small intestines and bypass some of it to the pancreas along with the removal of the spleen etc. I told this surgeon that I thought that I was a candidate for lithotripsy they do for 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, 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. 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 put on clear liquids at home. The Drs knew that I was an RN and allowed me to do this. 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. With the history of pancreatic disease in my family my chances of developing it has increased 20 to 30 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 one 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. 

    If you are losing weight I'm wondering if you have not developed an obstruction. It sounds as if your amylase, Lipase etc. may not be making their way to your small intestines. I would have that checked out and insists on an EUS. The best definitive tool for diagnostics. I would also ask your Doc if being on Creon (enzymes) might help you gain your weight back. But, if it does that again tells me that you may be having absobtion problems. As far as your depression goes I've fought major depressive disorder for years and it's no fun. You must see a good counselor and be put on the right medications. Elavil btw is also good for pancreatic and other pain. You don't have to lose your life to depression. There's things out there and people who can help you with it. But you have to be willing to help yourself. It's not a sign of weakness nor can it just be shaken off if you tried harder. That's what many think and they couldn't be more wrong. I'd like to chat with you. Shoot me a prvt msg if you like. 

    DJRN

    NEVER give up and again, get 2 to 3 other opinions and ALWAYS follow your heart. 

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  • Posted

    I understand your frustration and hopelessness. I was diagnosed Wednesday with chronic pancreatitis and have been emotionally a wreck since. I think I just need time for it to sink in. My weight went from 130 to 95 and I am 5’2”. No fat to hold my muscles, which are getting bad. Going to therapy to help with all the weight loss so I can feel a little more normal. Thank you for posting, it does help to read that you are not alone and someone understands what is going on.  
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    • Posted

      I was diagnosed with idiopathic chronic  pancreatitus in 2016. I am also 5'2" and weighed 115. I know weigh 98 lbs. I just want some of my weight back, but no matter what I seem to do I can't seem to get past the 98 pound mark. I had a MRI done in 2013 and my pancreas was fine. However, since the mid 1990's I have had a issue with my parodid glands. My face on mainly the left side would swell when I ate certain foods. It wasn't very frequent until this past year and now it happens whether I am eating or not. I have now been diagnosed with Sjorgren's Syndrome which is an autoimmune disease. Now we are wondering if that triggered the pancreatitus. I asked one of my doctor's if there was a connection between the parodid and the pancreas and he said no. Turns out another doctor said there is, but rare. So now I guess I have autoimmune chronic pancreatitus. At times it can be very depressing. 

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  • Posted

    Joe, I am so sorry about all you've been through. I've gone through the same ordeal. I know how depression can take over after so many hospital stays. The sickness. If there is a way to pm me I would love to talk with you. I have a lot of things to say. 

    Sonya

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