Describe your chronic pancreatitis pain

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My doctor thinks I may have chronic pancreatitis and is sending me for an ultrasound scan. Please can you describe your symptoms and pain please. From reading online the pain is horrendous, my pain is mild to moderate but constant with no rest from it. It is worse with walking etc and slightly better when resting.

​Thanks

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  • Posted

    Forgot to say the pain is upper centre and left side and left side of my back
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  • Posted

    Hello, Mark. I began with sudden acute pancreatitis in August 2013. Pain was never excruciating, but mild to moderate over the next four months. Did get bad enough at times to need hydrocodone for pain. Also had to go on liquid diet a couple times to calm symptoms. By January 2014 I was diagnosed with chronic pancreatitis and put on Creon. As long as I take my Creon before each meal and watch what I eat, I'm good. There is just enough very mild discomfort under my left rib, to remind me that I have the condition. If I eat something fried or high fat, the discomfort will increase and I will feel it all the way through to my back. Absolutely no alcohol, no smoking, limit fats. I have found that eating smaller meals with healthy items in between, works best for me. All manageable for me and hope it stays that way. Wishing you a good outcome!

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    • Posted

      Thanks Toniamarie,

      ​My pain discomfort is constant, always there, never severe though. Can I ask if your pain was constant and worse with walking etc?, mine never goes, 24/7. No rest at all from it.

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  • Posted

    Quite shocked at the lack of replies, I always thought Pancreatitis desease was quite common on this site for supporting individuals. Maybe Im wrong.

    A big thanks to Toniamarie for taking the time to offer me some support.

    ​Thank you

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    • Posted

      Hi Mark, I just found this sitee and even though this post is about 6 mod old, I thought I could maybe give you some insight and support. I have had CP for close to 22 years and it never gets any better. I started out with having my gallbladder removed and then started having the worst pain ever on my upper abdomen and it radiated into my back. Dr said it was just from the surgery and would get better, but it only got better for a little while. About every few weeks I would have another attack. It took from 1995 to 2005 for one of the many Drs that I saw to finally diagnose it and by that time it was chronic and they told me that it will never go away. I know that every case is different depending on the person, and all I can say is please stay strong because it will get worse at some point. Don't let anyone fool you into thinking that this is some simple illness that you cann just be cured of at some point.

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    • Posted

      Hi tammie....the posts here are from months ago. Can you direct me to a blog where people who are living with debilitating disease share often their ways of both coping and finding different ways that make them feel better, even if only a tiny bit? I would be forever grateful to find other people living with this. I had a horrific episode in November. I had unbelievable pain and had to dial 911.. I had been feeling beyond crappy and struggling with pain but on that day I thought I was dying..In addition to having another pancreatitis attack, I had an aneurism in my spleen and phemonia. The cyst on my pancreas decided to start communicating with my lung and was draining into my lung. 23 days I spent over three weeks in the hospital recovering from near death. Between the chest tubes in my side, the drainage tube in my back and the feeding tube and the massive weight loss, it's been a nightmare. Ive also been told since that hospital stay I'm now a diabetic. the coils are staying in but the stent was to come out two days ago via an ERCP..when they went in the coil was no where to be found. The Dr said that happens sometimes. I try very hard not to google as it always ends in me in a complete panic I'm on deaths doorstep. Thank you for reading and thank you in advance of you can direct me. I hope today is finding you pain free

      michelle 

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    • Posted

      Hi Michelle,

      Hopefully, you are still around.  I've had the same stuff as you.  I was first diagnosed in 2012.  I've spent weeks in the hospital and have had numerous ERCP's.  They told me I almost died once, although I never thought that.  I've had the drain tubes, collapsed lung, feed tubes and weight loss too.  I was also later told I had diabetes but it went away.  They then concluded that maybe it was just my pancreas acting up.  There's been talk and actually scheduling of surgery then cancellation.  From bile duct cutting to the Whipple.  I am going through a ballooning procedure which they are trying to stretch out the passageway.  I'm on my fourth different set of stents now.  I go back in in April of 2018, unless something goes wrong, then off to Emergency.   I still suffer from pain, mostly in the ab region.  Would love to hear how you are doing.  I hope you are o.k.  Let me know if you read this.

      Michael

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    • Posted

      I just joined this forum. I'm looking for any help myself in how to live with CP. I've had acute attacks for several years now. I'm having my gallbladder removed in two days. I don't think that's going to help me. Because all my symptoms point towards more pancreatitis pain being that all my pain is on the left side of my abdomen and left side of my back. I call the pain feeling like I'm impaled with a spear. The hardest part for me is struggling to find pain relief. I've been prescribed creon and norco for the pain but I was only given a 5 day supply. the problem is I'm having constant pain and the doctors refuse to give me any more pain relievers. What do you take for the pain? How long did it take for your pain to be taken seriously? Thanks for any suggestions or help.

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  • Posted

    Hi Mark. I am also suffering symptoms that i think are from my pancreas. Do you get back pain? 
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    • Posted

      I have Chronic Pancreatis, I've had it since about 2012. My pain was so bad I could not stand up straigh and bending over holding a pillow against my stomach or a hot bath was the only releif.

      in 2014, the Drs at OKC Baptist Hospital said the head of the pancreas was calcified, and could not be fixed. I underwent a 10 hour surgery called a "Whipple Procedure" where they cut off the pancreas head, bottom of stomach and liver and connect it all together with part ofthe small intestine. The survival rate for the surgeryis about 30% mainly because if there is pancreatic cancer, the person won't make it long.

      I still have pain 24/7, my left side under my ribcage andall the way into my back. The drs said I had 2 options.,,, 1- take it out and be a diabetic for the rest of my life or 2- leave it and manage it with pain meds. I've had 3 Drs say go with option 2.

      I go days without eating, my body just says "no" it knows the pain that will follow........

      You are correct, there are not a ton of people with pancreatitis, I''m 51 and I know of only 1 person besides myself that has it.

      Ifyou have any questions, let me know. I hate to say it but I have done a ton of research on Chronic Pancreatitis, and somewhat of an expert.......wish I wasn't........

      regards

      Rick

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    • Posted

      Hi Rick, can I ask you about Chronic Pancreatis?  You said your head was calcified and I assume terribly painful-- is it possible to have RUQ pain raidiating to the back (centre right and not left), but no pain on the left hand side, as well as very healthy pancreatic enzymes in both blood and stool tests, and and still have Chronic Pancreatis? In other words, is it possible to have an inflammed/calcified head of the pancreas radiating pain on just the right hand side? If not, would you think I have gallbladder pain instead?
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