Chronic Pancreatitis

Digestive health
1

Hi i was diagnosed with chronic pancreatitis December 2006 and much to me relief as the doctors were starting to think the pain was all in my mind altho i lost 6 stone so i knew something was not right!

It all started about 4 years ago when i collasped at work due to sever stabbing and burning pain in the upper and right hand side of my abdoman.

I had many CT, X-ray and nuclear medicine tests that revealed nothing. After 2 ERCP's they could see that my pancreas had scar tissue on it meaning it was obvious that i had suffered previous attacks (this pain was not in my head). As i'm only 27years old it was the last thing that the doctors suspected. After many talks with doctors/nurses they could clearly see that i did not have an alcohol problem or drug problem.

I was finding daily life hard and to be quite honest a chore being in constant pain and feeling sick all the time. i no longer socialised with friends and could barely hold down my part time job and Uni. I honeslty just wanted to die!

Until...

In may 2007 i had a solar plexus never block that helped take all the pain and sickness away. That was until 4 days ago when i have had a major attack again and am now back on the morphine and all the other pills that u need to take.

I have an appt to see my surgeon again in november and i hope to see my pain specialist on Mon to ask if i can have another nerve block.

Idiopathic Chronic Pancreatits is the worst illness i have ever experienced in my life and i would not wish it on my worst enemy. Its really hard but i ask people in my situation to keep ur chin up and get a good surgeon and pain specialist.

Maria x :roll:

2

i have been diagnosed for almost a year now i am absoultley scared stiff

3

I too, was diagnosed with Chronic Pancreatitis a few years ago. I am a Registered Nurse, but even with the nursing knowledge I have, didn't understand this disease. I remember my first bout of pain when I was very young...early teen-age years. I was never diagnosed with CP until about 5 yrs ago. I was either told I had a hernia, gallstones, or indigestion. But I knew better. It's like a bomb went off inside me. The pain was unbearable! November of 2007, I entered the hospital for an ERCP due to recurrent pain. I was in and out of the hopsital for the next 4 months with uncontrollable pancreatitic pain. I had a picc line placed, and was on IV feedings for about 6 weeks. I've never drank, so I'm being told this is something I inherited from my parents. I'm guessing my dad. He was never given the diagnosis of CP, or even pancreatitic issues, but I can remember how he suffered when he ate. He doubled over in pain, but was always told it was an ulcer. He died at the age of 60. Even though he was diagnosed with pancreatiic issues, I know he had mal-absorptiion from this disease as he only weighed 85 lbs when he died. He was 6'4\". He always ate, but never gained weight. Now I have the disease, and have not been able to work for over a year. My problem is I am a nurse, and I have to take narcotics. I can't work on narcotics. The other issue I have is pain due to activity. I'm wondering if anyway else has these types of issues. When I become active, it stresses out my body, causing pain. It's not the severe pain that puts me in the hospital, but it causes me to take narcotics, and lay down until it passes....which can be hours to days. I've applied for disability, but was turned down. I appealed, but lost again, so I'm appealing again. I want to work, but don't know how I can. I'd love info from anyone who is dealing with this, and how they cope if unable to work. Thank you

4

Firstly I am very interested to read your posts. I sympathise but am not going to say I know how you feel because I don't as I do not suffer from this illness.

Please bear with me.

I want to thank you for your posts and assure you this is not intended as a flippant post at all but your posts have helped me with a problem that has been bugging me.

My little dog had acute pancreatitis 2 and a half years ago and was very ill and on a drip. He had flare ups on and off for 18 months until he stabilised on low fat diet and medication.

Sometimes now he has episodes of being unsettled and refusing to sleep at night, wandering around and sometimes quite restless, also showing signs of nausea. This seems to co incide with a long walk or eating something not on his diet. His stamina seems reuced for a dog of his age (5).

Now I know you are not interested in my dog, but last night I was up with him wondering what was wrong and why he wouldn't settle, then this morning I find these posts describing the pain and discomfort after eating and activity and it has filled in some of the blanks as he is unable to tell me what is wrong.

Thank you for this and I hope you will accept my post in the attitude it is intended, I am not being flippant.

5

Keep appealing. Everything in life is a battle when your truly sick. Just keep fighting. I have drank in my life but not like a lot of people I have known. I was diagnosed with chronic idiopathic pancreatitis. They say it's hereditary but I don't know that anyone in my family was diagnosed with pancreatitis. It's hard because I don't necessarily look sick but am bed ridden with the pain alot. The narcotics make me throw up. I also have hypothyroidism and gastritis. I don't think people understand sometimes how it feels to just have to lay down or fall down. The dizziness and nausea when you eat or from the multiple prebiotic you have to take just to digest your food and have strength in your body Or how it feels to know you are not the same anymore and how bad it feels to not be able to do like you used to. Good luck dear.

6

Hi my name is Wendy I'm from the U.S. I was just diagnosed with chronic Pancreatitis,

im 44 with two children. It's really sad to know I have this. 

I went to have some stones removed from my gall ducts and the gastorologist hit my pancreas I ended up being sent to another hospital screaming in pain for two days.

The doctors wouldn't touch me because of the trauma the other doctor caused so I was on morphine and dalahted every half hour nothing helped but time. I take morphine now because I have really bad back pain that's not even helping. I read your story and was just wondering if you could help me understand this a bit more, so this pain is forever? It's agonizing I've never had pain in my back until now. I have one of the best Gastrologists in my area so he's taking care of me. He is going in with a scope tomorrow, October 24th, to see what is going on now. Do you have back pain? Are you afraid at all about getting Pancreatic Cancer, I guess I should stop reading up on it so much it really brings you down. Hope to hear back from you.

wendy

7

Hi Wendy,  my name is Pete and I am 36. I live in the UK. I have had pancreatitis now for over 15 years! I was first diagnosed with it when I was only 20. I thought I would reply to your post as it can be quite a shock when you are first diagnosed and there can be lots of questions and worries going around in your head. If you need to know anything or have any worries, I am more than happy to try and help you in any way I can. Whether it be information about medication, experiences or just to chat, i will try my best to help. It is a horrible illness, Wendy but it can be controlled alot better than when I was diagnosed so please try not to worry too much. 

Hope you are not in too much pain at the moment. 

Kind regards, 

Pete 

8

Hi Angela B; did you keep all the paperwork?  I filed my DWP Appeal in late 2013 & won my case in Jan. 2014.  I'm in southwest & ould be happy to help you providing you have your medical notes.  You must go to your local free Law Centre to get them to help file the initial Appeal then, we have to prepare for the battle!  You can also file a legal complaint against the Ministers of this evil government prviding you are not working & are able to get proof of this from JobCentre & three months bank details to hand to courts, to file a Court Application, let me know,  if I can help pls? JonD

9

not all  Cancers/Tumours are hereditary Catherine, I did quite a lot of research, it seems that if we Humans have a low/damaged Immune System then, the prepensity for the cell to change and turn aggresive is increased.

I've never smoked but that can weaken the Immune System as can eating infected Beef, as in Beef burgers/beef/cattle steaks(which I've never knowingly eaten).  Worldwide, there still seems to be a risk attached to eating beef related products after worldwide BSE outbreak(s) & according to research and a Journalist called Christine(whose son died(aged 24) of CJD, from eating hamburgers(beef)) the prions were still being transfered from mother-cow to her offsprings, calfs and down the food chain & the cycle continued.  She, Christine was stooped in the UK/West by commercial interests/farmers/corporations, who put profits before people & she was effectively muzzled within the Media.  There's also the risk of cross-contamination by butchers/slaughter houses in that, the men used the same knivies, without cleaning/washing them for different types of meat carcasses.  That's why when testing was carried out they found horse-meat in many meats/poultry, animal products in supermarkets.  We the people trusted big business regarding how/where our food came from however, they were less that honest/hygeneic!

10

Hi Pete

I found your post really reassuring and am grateful that there are people like you that selflessly offer support to others. My husband has just been diagnosed with early chronic pancreatitis. He has had a cyst drained. He doesn't have a drink problem so apart from a serious crush accident he had about 15 years ago that's the only thing we can think that set it off. Due to the injury when he's had back pain we have assumed it was actually just back pain. When he's had vomiting we've assumed it was just that so it has gone untreated. We've not had much information or guidance given so don't really know what to expect now. We saw the consultant on the 22nd Dec and I asked what we should do like any specific diet and they said no carry on. They even said my husband could have a small drink over Christmas (which he didn't) They said don't look on Google as you'll frighten yourself to death.  So feelquite afraid and don't really know what to expect. But thank you for people like you for your support

11

Hi Theresa, 

Thankyou for your kind words regarding my post on pancreatitis 😊

I am sorry to hear of your husband's recent diagnosis...please feel free to ask me anything about the condition should you feel the need to or even just for some advice or support! It is a scary condition to be suddenly landed with and all the more so if it happens without any explanation or warning. When I was first diagnosed, it was due to a massive, acute attack which put me in intensive care for a few weeks. I did drink alcohol at the time, although I believed that I was just like every other 20yr old who enjoyed going out with his friends. For some reason however, I was told by the first doctor that I saw that it was due to alcohol, even though it was virtually unheard of in someone of my age at the time...and I believed this doctor up until around 10 years ago when another doctor I saw-a consultant urologist, told me it was extremely doubtful that it would have been alcohol-related for a 20yr old whose liver was completely normal! 

It is funny that you mentioned your husband's crush injury... (not in a literal sense obviously!) but not long before I had my first acute attack, my then girlfriend kicked out at me whilst we were sitting on the sofa... Presumably in a joking kind of way but she did it far harder than I think she realised and I remember being taken aback and in pain at the time which made me wonder if that could've brought it on even?! When you mentioned a crush injury, it was a sort of crush force that she did. Sorry for rambling on! I just hope it couldn't have been that! 

So your husband has had a pseudo-cyst drained...did he have to have an upside-down smile incision or were they able to do it with keyhole surgery? Mine was the former unfortunately and the recovery was excruciating 😞

I hope you don't mind me commenting on some of the points you raised, Theresa? With regards to your husband being told he can drink a small amount of alcohol...as the cause of the problem was not down to drinking, doctors seem to be a bit more relaxed with allowing small amounts on occasions... however..with chronic pancreatitis, people's bodies differ a great deal in it's tolerances of whether they're able to drink the same as before their diagnosis or in some cases, even using mouthwash with alcohol in it can set off an attack. I no longer drink because it's just not worth the risk and I have had so many attacks now that the vast majority of my pancreas has calcified unfortunately. I now have diabetes which means I have to inject insulin twice a day. 

I hasten to add that my case was quite severe with quite regular attacks over the years which is why I have ended up with diabetes. Your husband will all being well, learn to manage his condition and what foods to eat etc. to keep his symptoms and pain at bay. 

I have to stay away from spicy food and anything that is too high in fat, as it requires your body to work harder to digest it. I have to take tablets called 'Creon' which help in breaking down food properly. They are actually made from pigs pancreas believe it or not!?! They boost your enzyme levels which help to break down fats in your food. Your husband will know he needs to look into this if he has a change in his bowel movements and weight loss. I can give your more information should you need it 😊 the only other thing I can think of mentioning is pain relief...as you will know, whilst acute pancreatitis is a short-term and usually quite sudden onset of the disease, chronic pancreatitis is is classed as a long-term illness with pain that changes in both it's frequency and severity. Some people are lucky enough to hardly get any pain or other symptoms associated with it whereas others like myself, have to cope with daily pain which can be moderate to severe. Due to this, I have to take opiate medication which is morphine. If the pain is bad but not severe, codeine can sometimes be strong enough to combat it. There are also many other types of pain medicines that can be tried...most if not all, I have done so if you need any advice on any medication associated with chronic pancreatitis, please ask away! 

I do tend to go on a bit sometimes, for which I apologise! I've just noticed I have been typing away for over an hour now! 

If you have any questions at all, just get in touch and I promise to try my best to help you and your husband 😊

Kind regards, Theresa

Pete 

12

Hello Angela 

My husband has his second pancreas attack and now he's hospitalized a day and CT scans he had IV fluids and medication thru his iv his pancreas levels down to 500 now but lately he's been getting a hundred and one a hundred and two fever what could that be. his pancreas is still inflamed. He does have history of alcohol. His 45 I'm worry

13

Hi donopete

I found your post so helpful and thank you for the time you spend to help people. I have some questions for you. I had my gallbladder removed 3 years ago but I am having the pain back exactly at the same spot that my gallbladder was. I went and I did many tests such as blood works, CT, ultrasound and MRCP which shows nothing. By the way, both of CT and MRCP were done without contrast. I went to three GI docs none of them found anything. But they all wants me to do clonoscopy and endoscopy to see if they can find anything. I told them all about the pain that I have and I asked them if it's my pancreas all of them told me no. Beacuse none of my test shows abnormalities not even my blood work. But then I asked them what this pain ithat it burnes ,it begins in my upper side under my rib cage, then it goes around behind my stomach and up to my shoulder blades, then it goes to the left side and it does not let me sleep on my left side. When I have bowl movement I have pain that goes to both sides and sometimes in the muddle. I am constipated most of the time. And this pain was constant for four mounts and now it's little better but it never leaves. I can not do turns and twists. It burns a lot and I don't know why. The only thing that I eat for breakfast is egg and steamed vegetables with lean Turcky breast. Recently just for last week I was feeling better like normal me before surgery so I had ice cream and I ate a little of different food that I was making and it didnt hurt. That surprised me and made me think twice that may it's not my pancreas but the yesterday I was working at home for few hours I got the back again. It woke me up in the middle of the night. I really don't understand it anymore. Will you please help me. And how do the doctors finds out your problem? I am going crazy here. Thank you

14

I would recommend that you ask your doctor about a Spinal Cord Stimulator (SCS).  Mine was implanted about 1 1/2 years ago and it has wokred pretty well.  It does not cure the problem, but it does tell my brain to feel a tingling sensation instead of the pain with CP.  It does not help me with the breakthrough pain, but for that I take Tramadol after being on opitates for 1 1/2 years.  The SCS can be programmed to cover different parts of your body where yuo feel pain.  The remote I hagve allows me to change the programs, intensity, rate, etc.  I would recommend going to the Boston Scientific website and see what the device acutally is and it would give you more infomation.  The SCS does not work for everyone, but it is an option to try.  I tried many different pain controlling remedies and the SCS seems to be the best at least for me.  Take care and my prayers. 

15

Hi my name is Thomas from u.s I was told I have a mild case of cp on jun the 29 and I'm so scared for my life I have no one to talk to who understands the pain my pain isn't like really bad I think I'm more so scared and that's where my pain comes from if that makes any since please help me understand this I'm 32 and so afraid of losing my life

16

I have sit here and read your entire post lol I needed it I was told I have chronic pancreatitis but my doctor told me its mild whatever that mean he says that he is waiting on results and that my pancreas was a little red and scared I'm so lost I read stories of people loosing there life and all I can do is cry I'm so depressed I don't know what to do no one to talk to I'm just sad all the time cry cry an cry my doctor gave me the creol but said its pointless to take until my results come back HELP PLEASE

17

This is my 4th time to have pancreatitis. It's been alcohol related ever time. I used to be a heavy drinker but agreed with my wife to cut way back to avoid this. I haven't had one for 2 years until this past Saturday. And I admit I started drinking more than me and her agreed to.

I drink at 5:00pm with a few shots of vodka and one beer and usually finish by 8:00pm and go to bed. This past time I probably drank a pint of vodka each night for 3 nights until I woke up Saturday in extreme pain and knew exactly what it was.

I know this best thing to do is give it up completely Do you know of anyone who quit drinking but still had attacks? I should mention the dr. (He is my regular) said the last one a few years ago showed a cyst. He said the scan yesterday showed that the cyst is gone which he said was a sign I had decreased my intake. I just want to know what I might expect going further. Thanks for sharing your story!!

18

I was admitted to hospital as an emergency  last October .I had pancreatitis ,a gall stone and E. coli .. Since the operation I have never felt normal again and I have had a couple of bouts of actually thinking I was dying ..I bloat up so much I feel I can’t breath .I ha e a cyst on my pancreas which they are keeping g their eye on .I am due for another scan June  it I do t feel I cant wait and wonder if they would bring it forward .I am a slim person but midriff is distended and I have 

pain under my ribs .not feeling good 7 months on

19

It’s very scary   It the. Set thing to do is get the help you need from the hospital .i am going through a similar emotion now and feel for you