Describe your chronic pancreatitis pain

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.

what is the creon dosage with each meal . describe

My pain never eases nowadays.

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.

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 

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

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.

Yes Leigh74005 I also get back pain

Hi Mark. What does your back pain feel like? Can you make it worse with movement?

I can make mine worse if i bend over or strech. Feels like a muscle pain

Its hard to describe the pain, it does feel similar to a pulled muscle and is always worse with movement

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

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?

Hi rick.

how is your pancreatitis now if I may ask ?

HI Rick.

I realise this is an old thread. I am 54 in August and suffered from severe acute pancreatitis in 2015. I had an operation to drain a pseudocyst and have been on Creon since then but I am struggling with pain management at the moment to the point where I just feel like I am getting nowhere with the pain clinic having been prescribed various pain relief for the last three years.

Tom.

hi rick im new here ,had chronic pancreatitis confirmed by ct scan 4years ago,

need to talk with people who understand but i notice these posts are from 6 years ago 😔

so alone and scared ,

if you read this id love to know if anyone is still here to chat

also what is it like 6 years on .

Doctors don't tell you anything, and the pain etc , i google and its really scary and lonely not knowing what is going to happen.

they wouldn't operate,said i wouldn't survive,so im just battling on ...my tail has disappeared, in the 2 years between ct scans , its now been 2 years on hate to 5hink what's going on.

im scared of diagnosis of cancer and diabetes, let alone the complications that can happen

if anyone is still here , hi.

hi im new here, most of the posts here are 6 years old .

are you new here too

i was diagnosed 4 years ago,

feel so alone and scared to ,, doctors won't

hi leigh back pain was definitely a symptom of mine, excruciating front and upper back, i was diagnosed 4 years ago , Dr had me thinking i had bad constipation, i asked to be scanned as i felt i had something bad gnawing inside me , Hope you're ok .