Post

8 Years and Tired of It

I have been suffering from chronic pancreatitis now for about 8 years. It has cost be 2 jobs and almost cost me my marriage of almost 20 years. I now find myself unable to work a regular job due to the increased severity of my disease. I am now looking into obtaining disability. In the last year and a half I have went from 215 lbs to about 150 lbs and continue to loose weight. The culmination of all these factors has me afraid that this disease will eventually kill me. Depression has also factored into a part of my life even though my doctor has prescribed me anti-depressants and none seem to work. I am on a multitude of painkillers that do nothing but knock the edge off of my suffering. I am open to almost any suggestions of what I can do for help with my quality of life. If anyone has an idea to share I am open to listen.

tiredofpain tiredofpain 41-45 27 Responses Jun 22, 2008

Your Response

Cancel

I suffer from Chronic Pancreatitis also. I am unable to work because my condition continues to get more severe. I was diagnosed around ten years ago. I filed for disability after having to give up my career. My employer met with me and told me to go home and try to get well. I was devastated. I still waited four years until I filed my claim. I need any advice I can get.

I was diagnosed with Pancreatic Duct Divisum in 2012. Of course at first I was dismissed in the ER as just having acid reflux even after my primary doctor sent me to the ER with the diagnoses of Pancreatitis. The following night I was taken to the ER by ambulance finally to be diagnosed with Pancreatitis. With further testing, I was diagnosed with Pancreatic Duct Divisum. This is a congenital defect.
I have always suffered with stomach issues but doctors and specialist never investigated far enough. Sad. This has caused a lot of damage to my pancreas. I am 46, so since birth it has been a struggle eating my entire life. If it was caught earlier a lot of damage could have been avoided.
I had a stent put in last year but it didn't help much. I still have attacks monthly. It has cost me my job. My anxiety is high and I suffer with depression. I try to wake up and move forward with a positive attitude until I have to eat something. Then the stress begins. My passion of traveling has been shot down. I constantly worry about diabetes. I am a new grandmother and the though of a shortened life span deepens my depression. I wasn't born a "Debbie Downer", but it is constantly in the back of my mind.
I am working with a specialist at the University of Maryland. The same doctor who put the stent in. I take enzymes after each meal (they don't seem to help). But he has proposed a pacemaker kind of implement that works for your pancreas. I also suffer with IBS, Lazy Stomach, and acid reflux. This so called pacemaker puts everything in rhythm. Apparently they do this procedure at a hospital in Philadelphia and Washington DC. Should receive this procedure and it has positive affects I will be happy to share information. If anyone has already received this treatment please share your story.

I live in Canada, it seems here if you are female with idiopathic pancreatitis and good doctor you may get disability benefits. I have alcoholic pancreatitis and they have denied me every step of the way. So my income is $0. Good luck. At least in Canada I can still get medical treatment free.....but no benefits of any kind. Die quicker is what they would hope;)

28 years and still here.

My first episode happened when I was 13 and it took 20 years before doctors worked out what was actually wrong. That was despite having severe episodes of excruciating pain 2-3 times a year. It took me a further 2 years to convince them that I wasn't an alcoholic and that I hadn't brought this upon myself ( I didn't start drinking until I was 17 ).

So while the pancreatitis is idiopathic, so is my current lack of symptoms.

For the last 7 years this once debilitating illness has become nothing more than a minor irritant. I take Creon and Calcichew ( for the side effect of osteopenia ) and suffer some mild discomfort. That's it really. No painkillers, no operations, nothing.

I wish I could tell you how this change has happened, but neither myself or my specialist have any clue. I still have a pseudocyst and reduced pancreatic function but that's it.

I know just how bad it can be ( like you could ever forget ) but you should never give up hope.

What's up my name is Rashine and i as well have been suffer ing with chronic pancreatitis for the last past 8yrs. And i feel your pain literally!!! I held a job since i can walk !! Now.iam Straying for ssi!! It's hard on me especially for my legency !!! Iam losing weight drastically !! The more i eat the more pain discreet!!! My bad iam talking about myself but i understand!!!!! Get healthy ;-) well is a overstatement!!!!

HELP PLEASE ANYONE WHO CAN GIVE GUIDANCE...
Like many of you I too suffer as a Chronic pancreatic.. I lost my beloved mum to it too. She slipped into coma and left this world of misery 6 months later.

I had a brilliant government job and they ceased my employment because of the constant attacks. They got out of paying me a pension by saying though there is no cure there may be one in the future! Initially I fought their decision however the stress and depression eventually made me lose my will to fight.

I have 3 young children and my baby girl also passed away with a stomach related illness. I have tried for more employment but no one wants a sick worker. The state don't class me as disabled and recently stopped the little benefit I was receiving. (About 40 pounds a week) They also cut down the rent and council tax payments they make for the unemployed which has put me in severe arrears. My wife has been supportive but I can see the stress she is under and it has put a great strain on our marriage. We have not been intimate for a long time as the medication, well I'm sure you know...

I have worked since the age of 12 and am 36 now, the illness gets worse and I've been fighting it for the last 16 years. The morphine based painkillers keep increasing as tolerance develops...I have never drank the devils urine (alcohol) I apparently was born with the condition which was never properly diagnosed until I was 19! They took my gall bladder out and there was nothing wrong with it! I dare not use any toilet but my own it's disgusting and so embarrassing. The appeal may take up to 40 weeks! I feel suicidal at times, I will not walk the cowards way. Poverty removed many friends and illness removed relatives...

Now i'm spilling my heart out to strangers sure, but at least these strangers may have some notion of the suffering I am enduring.

PLEASE PRAY FOR ALL WHO ARE SUFFERING. SAY NO TO RELIGIONS THAT SEPARATE HUMANITY I JUST PRAY TO THE SINGLE CREATOR OF LOVE, COMPASSION AND MERCY and YOU!. AMEIN!

Without HOPE we become HATE.

Feel a little better already! :)

Hi my daughter has been suffering from chronic pamcreataitis since she was 5 yrs old and not diagnosed until she was 10, at one time I almost lost her. Hope came after she was successfully treated thru ERCP procedure at Asia's best gastroenterology centre in Hyderabad ,INDIA , They have the most experienced doctors and with very high success chances. I have been there 5 times for STENTING and stent removal for my daughter and with the help of doctors and god grace she is completely fine with a record of no attacks in the last one and a half years. You need to visit Asian institute of gastroenterology in Hyderabad in am certain they can get you back on track. Little effort required but it's worth your life. GoD bless

Hi I'm the same 13 years 10 stents waiting whipple surgery now ...
Pain is awful but im on pain patches which ease the pain a little my pancrease duct is too narrow hence surgery ,
And when you hit rock bottom you can only go up from there I always think about people worse than me and am happy I'm still here . Work is a nightmare as its impossible ... It's harder that you may look ok on the outside but inside your hurting , pain , tiredness and the lack of wanting to go on at times ... And the only people who understand sometime how hard it is are the people who go through this awful disease daily .
Although my family are great I feel a burden at times . So my heart goes out to all of you with stories shared it helps a little
Hugs xxxxx

Hi everyone, I'm 27 I had my first episode of pancreatitis when I was around 16 just before my A levels, due to this I had to take my exams at home, I also failed two years of university due to these attacks and have lost 3 jobs due to absence, My pancreatitis is idiopathic in the way that the doctors aren't sure what is causing them, It has been found that I have a birth defect on the organ itself (pancreatic divisum) I've also had my gall bladder removed in an attempt to stop the attacks although this has had its own unexpected problems, as you can guess I take a cocktail of tablets to ease the pain (mst, oramporph) along with antidepressants, I feel that the disease had ruined my life in so many respects, but I'm thankful I'm still here, I know none of this reply will help anyone in anyway I just read similar replies and wanted to share with people that understand.

to all you that r suffering from this disease, god be with you. Its awful. Ive been having almost non-stop pancreatitis for the past two months, it started over a year ago. My lipase is always normal, and they have yet to know why. I am being scheduled for mri, and ercp, ect. I have developed a bruise on my belly? Anyone else have brusing? Currently I am receiving inadequate pain control, partially because Im not officially diagnosed. Honestly I feel like its killing me. I have a history of cancer, and am worried they will find it there too. I hope they find a cure for this disease and better pain control methods. Best regards to all.

I am 20 years old. Never done anything to hurt no one, never done anything to make people think less of me. I have had Chronic Pancreatitis since I was 13 years old. All doctors I ever visited due to the pain said it was Acid Reflux. Now, my mother has Acid Reflux so all my life everyone made fun of me when I said my stomach hurt cause they thought I was just being a big baby. They gave me medicine for something I didn't have and some of it made it even worse. Finally in December 2011 the worst attack came. I was up for two days straight, hadn't eaten anything, was drinking plenty of water and could not stop puking. This was during my 2 days off from work as a cartpusher/stocker at a local grocery store. I was going to go into work no matter what until I started puking up blood and becoming faint. The pain was unbeareable. I was seriously thinking suicide cause it was too much. It just drove me into a deep depressing state of finding a way out but there was none but I needed the money to pay for rent. After 20 minutes I became seriously delirious. I called my sister and said "i need hospital can't talk please help." She picked me up 10 minutes later from my place and took me to the hospital. Doctors said acid reflux at first and I said no. Everyone has been saying this to me but no positive changes have come my way. I asked for pain meds and they said we want to figure out what's wrong with you first. 8 hours later of mindless pain I forced myself out supposedly but I don't remember much and my sister took me to a hospital a hour away where my uncle in law works. He gave me pain meds within 2 hours and told me I may possibly have pancreatitis. Now, I have never drank alcohol except for special occasions. NEVER HAVE I BINGED. Other doctors called me alcoholics, said I should see cancer patients and see what pain is like. I said I want to see my uncle. He had to tell them shut up even though they are his colleagues. I know what pain is like and I have been feeling it since I was 13 and to someone finally tell me this pain is real and hurts, I cried. I literally thought all these years I was just being stupid and a wuss. 6 months later, another attack. This time we figure out I have Chronic Pancreatitis. Know what everyone has been telling me since the last attack? "It's rare for som1 your age to have pancreatitis. Usually people get it when they are older" Know what I said to myself? I'm not even 21 yet. Life has gotten a hell of a lot more complicated and I hate it but I'm trying to keep myself together. I want to give up sometimes...feel like half my life is already over now because of this stupid disease. Know what, think I want to learn how to play the piano.

Hi my daughter has been suffering from chronic pamcreataitis since she was 5 yrs old and not diagnosed until she was 10, at one time I almost lost her. Hope came after she was successfully treated thru ERCP procedure at Asia's best gastroenterology centre in Hyderabad ,INDIA , They have the most experienced doctors and with very high success chances. I have been there 5 times for STENTING and stent removal for my daughter and with the help of doctors and god grace she is completely fine with a record of no attacks in the last one and a half years. You need to visit Asian institute of gastroenterology in Hyderabad in am certain they can get you back on track. Little effort required but it's worth your life. GoD bless

I'm so sorry you feel so down. The constant knawing pain is so hard to ignore and is bound to have a huge psychological effect. I have struggelled with chronic pancreatitis for a long time now and since it has got a lot worse I have tried my hardest to avoid depression. It is so difficult in this situation, not to let things get on top of you and to lose hope. There are times I feel so worthless, I hate my body for what is doing to my life, I hate what I have become because of it. It is so hard, but I know that once I let these thoughts take over everything will be so much harder to deal with. I don't think I could cope if I did let myself sink into a depression, so I try hard to focus on what I can do, what I love in life, what makes me happy. It sounds so obvious, but sometimes the obvious things are the things we forget to do. You are a wonderful valuable person. You are loved by those around you and through your life you have made people smile and laugh. There is so much you can still do. Don't let this pain win, focus on making the best of it. Focus on what you love and the people who love you. I hope things get better for you.

I am living with chronic pancreatitis, i have been in the hospital over 12 times in the last 10 years. I have become very depressed due to not being able to keep a job. Tryed to get ssi disability but was denied..I take vicodin for the pain, i have lost so much weight, i am down to 94 pds. If i am very carful and eat non fat food, i will gain 5 or so pds, but as soon as the panceatitis starts again i loose all my weight i worked so hard to gain. At night is the worst, bile comes up and the burping starts hate that. The worst i ever had it was 1 year ago, i went to hospital and started vomiting clear bile it was alful, so salty, i was in wilson hospital in ohio, the nurse said to vomit in trash can and i begged for a medicine to stop vomiting it was burning my mouth, she said, There is no doctor in hospital to late all are gone, are you kidding me, then i told her i vomited all over my bed, she said i dont see any vomit, It is clear,,,i was so upset,,this went on for hours, then a male nurse came in my room around 4 in the morning and seen me vomiting, he ran to get a doctor, and gave me a pill to stop vomiting, i then told them i wanted a doctor to release me or i was walking out. they said my sugar was too low. but i refused to stay anylonger, so they let me out...Last time i will ever go there...I pray for all of you, this cp has taken my life away and i try everyday to keep my hopes up but it is so hard when there is no help for you here in ohio...

In May of 2002 I had my first attack of pancreatitis. My bout was caused by taking Accutane for a little over a week. I went to the ER with stomach pain and 3 hours later was in n induced coma in a large medical center about an hour from my home. After 30 days in the hospital I was released. Two weeks later I was back in again and again and again. I was diagnosed with CP just a few months later. I SO understand what you are going through. I am also on enzymes for digestion, omerozole for acid and Opana for pain. I also have celiac plexus blocks every 6 weeks to control most of the pain. I have gone from 175lbs to 135bs. I am constantly in pain and most days nauseas. The nerve blocks help, but only for about 3 weeks. The pain killers help, but I'm so afraid of becomming addicted I only take 1/2 the dose. I am seriously considering applying for disability benefits. I currently work part time, but the pain and nausea is effecting my work. Not to mention the days I have to take my pain meds at work. I am only 33 and I feel like an 80 year old.

I do fine that pot helps. I know many people many people may disagree with this choice, but it helps with nausea AND pain without the side effects of the Opana. I am also looking into the Mayo Cinic as they have programs devoted to those suffering with CP. I would look into the nerve blocks and see if that is something that may help. Acupuncture is also a good idea, but if not covered by insurance, it can be expensive. Good luck whatever you decide.

I like your user name...so true. I am on my way out this morning to accupuncture with hopes it helps. I admire your positive state of being. I, also a mother, wife and comrad with C.P. I have done many things to try and dull the pain...mostly I see a councellor and try to stay as healthy as I can...take vitamins...B, C, A, D..and Kelp...I would like to believe they help...my mind feels clearer when I do anyways. I know my councellor helps amazingly well...keeps me being positive! I also believe sharing our stories helps me know that I am not alone,because this disease is isolating, socially challenging and just not nice. I must head out now...my day is begining and pain meds are working now...One day, one moment at a time is my life now and I try to embrace the goodness when it is here.

I had an inflamed pancreas in december not really pain more discomfort a lot of movement in my upper abdomen, doctors not sure what caused it they say it could have been the medication I was taking for my back, but I feel very lucky after reading other peoples experiences with there pancreas.....

I was diagnosed with pancreatitis in November. I recently had a stent placed and two weeks later had it removed. I am still struggling with the pain especially at night. I feel like I am dying everynight. Sometimes I am surprised to wake up the next day. I used to weight 140lbs. Now I am at 129. After my GI took my stent out I asked him what type of Pancreatits do I have. He said you do not have Pancreatitisand that I was going to be fine. I went back a week ago because of continious pain. Then he said my gall bladder may be diseased. I find myself going to the internet daily to find out more about the disease because I had never heard of it. My husband feels I am worrying myself to death by going on the internet. However I feel my doctors have not told me enough to ease my mind. I feel like my pancreas in being completely destroyed and I am going to die. My doctors have me on Tylenol. But I am afraid it is damaging my liver. Needlesstosay I am a basket full of nerves with this disease that has invaded my body. What pain killers are some of you using? I hope the best for all of you.

I was diagnosed with acute pancreatitis over a year & half ago. It is now chronic pancreatitis. I had to leave my full time job and am now on Soc Sec Disability. I am not a drinker/smoker andhave no idea how I got this condition. I have been in & out of the hospital at least 6-8 times since this disease struck. I liveon nausea &pain meds, and of course feel very depressed. I am newly married and this condition has put a damper on my new relationship, although my husband is kind & supportive, no matter what..it still is an unpredictable disease & I am just learning that there are so many people just like me out there struggling with this. After many GI consults, my primary care MD advised me to take a break from all tests and see if this resolves on its own. Good to know that others with the same condition are out there for support.

HealthGuy -- surely you know the treatment plan and prognosis is NOT the same for everyone. Just as there are many causes of chronic pancreatitis, there are also several different courses of treatment. Some have found total removal of their pancreas to be the last chance in a very long line of unsuccessful treatment plans. They never go into that drastic measure until everything else has been tried without success. I hesitate to even ask, but what is yosur miracle cure? So many times when someone comes on saying they have been cured from chronic pancreatitis by some herbal remedy or secret drink, it is because they really never had chronic pancreatitis in the first place. It is sometimes misdiagnosed and some try to self-diagnpose just because they've had acute pancreatitis more than once. Skeptical? You bet I am. I've read so many of these claims and would LOVE for one of them to really be the answer for all of us. That would be a prayer answered but I don't think I'll read about it in a forum first -- I will read about it in one of the many health journals I scan for pancreas info. The docs won't keep it a secret from us despite what some of the miracle cure ads say.

My husband had 1 episode of acute pancreatitis 10 yrs ago (triglycerides 4000). Gall bladder removed 8 yrs ago. Pancreatitis symptoms recurred 1 yr ago w several episodes in the last year. Has a spot on the pancreas watching for dev of cancer. Diabetic dx 12 years ago. Father died from pancr cancer 1 yr ago. gastro doc recommends pancreatectomy but let surg suggest partial or complete. Anyone had the pancreatectomy without the islet cell transplant?

Everyone puts their faith in orthodox medicine when in fact a doctors profession is called what?

A practice?

I can tell you from personal experience that most doctors have trouble even recognizing pancreatitis let alone how to treat it properly.

From your username I would guess you have pancreas divisum. You are different than me and what I do may or may not work for you because I don't have pancreas divisum; However, what I do has now worked for a suprising number of people who have decided to actually DO what I do.

Will you read about what I do in a medical journal?

I doubt it. However ...

There was a doctor from India, Dr. Pramod K. Garg, who used supplements to relieve pain in chronic pancreatitis patients. His finding were published in an issue of Gastroenterology in 2009. But ...

To me that was very OLD news because I have known that certain supplements do a much better job than he was able to show since 1994. PLUS, he used supplemets that are toxic in large doses, the ones I know of and use are NON-toxic. So ...

You have your beliefs and I have MY actual real-life experience and the experiences of others who actually have done what I do. You can wait til you read about something in a medical journal, I'd rather use my head and keep surviving pain free just like I have done for over 30 years now. But ...

Let me give you an example of orthadox medicines ER protocol for Acute Pancreatitis.

If you go to the ER with pain and nausea, maybe severe pain and vomiting and you actually get an ER doc with enough brains to listen and do PROPER blood work, he or she may find elevated amylase and lipase levels and then may order a CT, US, EUS and then later an ERCP. (ERCP's CUASE acute pancreatitis in 6 - 11% of patients). Then ...

Once they diagnose the acute pancreatitis you may get a feeding tube stuffed down your throat (bad idea, cuz food should be avoided), they give opiates for pain (opiates CAUSE acute pancreatitis) which only masks the pain instead of attacking the real problem which is inflammation but hey ...

Everything in life boils down to a choice. And the choices we make determine our destiny. Personally ...

Unless I knew I was in absolute danger of impending death due to necrosis, internal bleeding or organ failure I very much prefer that doctors never treat my pancreatitis and ...

That may be exactly why I am still alive today. Hell ...

It took 14 of them to even diagnose me!

EVERY ER doc (7 times in ER) stood around with their thumbs up their ***** and looked at me like a bull with a bastard calf. They did NOTHING right.

ONE gave me a shot of demerol - it did NOTHING! It didn't even take the edge off the pain and did that doc do anything else to find a solution or even a diagnosis?
LOLOLOL, NO, he discharged me!

I had a Gastro tell me after a 5 minute interview that I was to young to have anything seriously wrong and that he thought I had a spasdic colon. I can go on but I don't want to bore you or anyone else, especially myself. However ...

WHY would I want to let these people treat me, unless it was an absolute last resort?

Once I was diagnosed I was able to use my head, do research and create my own treatment that actually worked. You can read more at: overcomingpancreatitis.com

HealthGuy: please elaborate on your last statements on what you have done. Could you be more specific. My husband is recovering from a very severe bout with pancreatitis. We want to do everything possible to prevent a reoccurance. Thanks!

You can find everything I do on my blog: overcomingpancreatitis.com

Those of you thinking pancreas removal of course you realize that once it is out it can not be put back right? Well I guess they can do a transplant but success isn't the best. I know you hurt but why would you want to have surgery when there is a way to become pain free and actually allow your pancreas to heal? I know, I have done it. You just have to be willing to do what it takes to heal.

Really? Go ahead tell me how.

You can find everything I do on my blog: overcomingpancreatitis.com

Hi, fellow pancriatitis- sufferers.



My name is Yolanda, am a 46 year old woman that had my 1st severe attack about 14 -15 yaers ago.

It got "better" after my first hospital stay for about 10 months, then it struck again. and again and ....

18 hospital stays for severe acute pancreatitis attacks (by about tht 10th acute I developed chronic.

Vacations were cut short because i would get an attack after eating in a restaurant(waiters swearing up and down, no butter was used, everything was steamed etc, (lies, of coursr and i would suffer)) It just got worse and worse.

Some car-rides would kill if there were bumps that caused movement of abdomen and then caused severe pain

Being a paramedic doing tons of research, on chronic pancreatitis, I, like all of you have become an expert..

Working in a lab in a hospital i know things can always be worse, but betrwwen you an I, this thing is pretty life consuming.

I went to see my docter today(mandatory because of pain meds presciptions) otherwise I decided about 2 years ago, i am done with all of it, doctors, hospitals and the like(not much they can do anymore).My MD finds me amazing, i told him my last hospital stay would be last, unless I'm dead, so far,I kept my word., He cant believe i am managing, fully functioning(work full-time)Because of this, he will do/go along with anything I sugust or ask.(within reason, of course)

I am lucky to be a paramedic and am able to give myself fluids via IV, know what to do medicially

I am at the point that i will try to eat anything, small portions and what stays down stays down, what does not, comes up.

i do space out pancr, enzymes througout the day, sometimes up to 32 viokase

I developed some nast complications,like gastric paresis, esaphogeal spsms, now diabetis.

Howany of you have diabetis?

I had trouble accepting acid erosion on one of my teeth,(caused by the acid from vomiting) but my dentist fixed it.

I am not trying to scare any one, hey I am still alive after all these years, but we all know, pancreatitis ain't no picknick.

Hope you r all well, let me know how you are handling the depression, I 'm having a rough time @ it finally now with the diabetic-part..



.

My pancreatitis was caused by high triglicerides,(most of the time trigs above 1000-1500would cause an awful attack.

Anyways, my weight had gone down to 94 lb, due to 2nddary stress in my personal life, main reason being my pancreatitis

I ran my bloodwork this am(work in laboratory) and was dismayed my glucose was 310, here is the moment i have been dreading for years.

Anyways, I hope you are all well enough to handle it all, in a bittersweet way it is nice to know I am not alone. God bless, any suggestions, feel free.

Thank you so much for this post. I relate very much to your story. I am an RN (disabled) and haven't had any alcohol for over 30 years. I started having episodes of acute pancreatitis when I was 51, and they were caused by gallstones and bile duct malformations. I had my gallbladder removed, and after several ERCPS (2 of which landed me in the hospital for weeks because they caused acute pancreatitis!) the bile ducts are now as functional as they will ever be. So, after 14 hospitalizations for acute pancreatitis, I was diagnosed with chronic pancreatitis about 4 years ago. I cannot eat most foods, and am one of the very rare patients who cannot tolerate oral pancreatitic enzyme supplements - they cause severe burning pain. So I now have a PICC line in my right arm, and feed myself intravenously with TPN (total parenteral nutrition) every night for 12 hours. Fortunately my insurance pays for most of this, or it would be impossibly expensive (it's about $6,000/month here in Northern California!! outrageous!). My quality of life is so poor - I am profoundly weak and have chronic abdominal pain which I must treat with opioid medications - then there is the whole issue of constipation, which I can manage, but it's awful. Recently I learned about "total pancreatectomy with autologous islet cell transplantation" and explored it with my GI doc. It is performed in only 5 medical centers throughout the country, and I recommend that anyone with chronic pancreatitis read about it. Unfortunately, in my case, my doc says it's "too risky, too many unknowns, etc." I told him that I am willing to take those risks, but he has still declined the referral - here it is done at UCSF medical center, the only place west of the Mississippi that performs it.) I would love to chat with any of you, even if you don't have answers, as this can be such a lonely disease. Thank you so much for you posts.

I am recovering from Nov 2013 Frey procedure at John hopkins hospitsl in baltimore. At first I had high hopes my life would return however after another hospital stay of "chronic pancreatitis" and numerous blood work and colonoscopy test, I am done testing and the suggestion of another sbdomenal surgery, scar, and recovery, makes my 112 pound body hurt. 7years ago I had faith in modern medicine and ERCPs with stent replacement destroyef my pancreas, hindsight is evrrything. I agreed to surgery and they optred the Frey over TPAIT to minimize diabetes which I control with diet, for now. I am at the end of modern means because surgery changed my "quality of life" alright, to being confined at home, medicated, weak, depressed and financially drained. Research for yourself, but this is my experience.

I have similar issues, including acid erosion. Good thing you are a paramedic you have a shot at disability. Most of us are finding we are denied any benefits once we become unable to work. Income for 6 years now $0, income prior to this 45k/year and CAW benefits.....there are 0 benefits in Canada for pancreatitis just pancreatic cancer. Goodluck.

I keep putting off my lab work just because I am afraid of the result, diabetes. I know that sounds stupid and I am only harming myself. But mentally I am not ready. I recently had teeth removed due to acid erosion.
But after reading many of these post, I will have my blood work done tomorrow. It's all in Gods hands.
I am thankful for a site that people can share their journey's.

1 More Response

i was diagnosed with acute pancreatitis i know how it feels severe pain that feels like it will never go away i use to feel weak and i lost alot of weight but i finally got the help with medication and surgery,in my pancreas i developed gull stones because it was so inflamed( so hang in there if you feel lkie its life threatning you should go to the hospital pancreatitis is a serious condition.)

Hey I was diagnosed with hereditary pancreatitis at age 14. This is such a hard thing to get through..but if you stay strong and have support it makes it easier. pancreatic enzymes work great when u need some time for ur pancreas to take a "break". I always eat really small portions of food but eat of of small portions, so you dont lose to much weight. It better than getting tube fed. I was tube fed for a bout 7 months and that was soo miserable. but now I take gemfibrozal(sp?) and another med. and ambien. Some people use Ambein as a sleeping pill but they put me on it for anzyity and im slowly feeling better physically and mentally. I always look at it this way. Pain is inevitable and suffering is and option. I will pray for you and i hope things get better for you.

Hey. I have had pancreatitis since I was 2 years old, up until recently on Oct.26th and then I had my pancreas completly removed. They transfered my insulin making cells into my liver, and although I am a diabetic, I only take 5 units a day, and I can eat whatever I want. Please contact me if you want any information about the surgery, I know I am only 15, but I know so much about this. You have to fight it and not let it win! I too was severly depressed. I know how it feels.

It is great to hear that you had the problem and you came out of it. I am also suffering from Chronic Pancreatits for the last 6 years and had been to many doctors but no improvement. I have been taking the enzymes but dont see any improvement. It would be great if you can let me know the cost of this surgery so that I will try that too so that I can come out of that problem as you are

Hej. I will have an ercp tomorrow here in London. I have had all test eus x 2 , ct, mri, mrcp all negative. Just spend 3 weeks in hospital. It is like the doctors do not want to diagnose cp here. They say if you did have cp we would only give painkillers. Anyway my pain is very pancreatic like and constant. I am not one of the lucky ones who only get an attack now and then. Since I am on very strong pain killers, fenatyl patches, mirtazipine, amatriptylne, morphine..... I have looked into this total pancreatectomy with islet transplantation. When I mention to the doctors they think I am crazy. Maybe they are scared paying the £42000 it cost here. Remember here health care service is free. Anyway i wanted to know can you eat pizza and everything or is the diet very restrictet?. Also how long did it take you to recover from this operation . Regds Lars

Yes, I am a wife to a pancreas patient. He;s had it for 3 years, and he's in so much pain. I am so sad for him. How do you become a candidate for your kind of surgery? I am all ears. Sincerely Wife.

I have had my SSI for almost too years now because of my pancreatits. My pancreas works at 60% and has caused more health problems for me too. I hope you better, you are in my thoughts.

Hey Hang in there. I have had chronic pancreatitis for 15 years. Talk to your doc about pancreatic enzymes. Your pancreas may no longer be helping you digest food and there are prescription supplements. That may help you gain weight and feel better. I went from 150 to 115 and was beyond anerexic before I started them. It helped the pain because my pancreas can rest now instead of trying to do something it couldn't. I am back to 140 and doing better. Also watch your sugars. Make sure you are not diabetic. Try to learn to focas the great things in your life like wife, kids ect and the depression may lessen which will also help to reduce pain. Life is worth living even if you hurt. Imagine all the things you could loose if you give in. It is a constant fight but someday they will find something to help us.

I too have chronic pancreatitis for now 7 yrs. I am severely depressed and in pain everyday, I have a 7 yr old daughter and it is very difficult to be the mother I want to be, and also wife. I have had marital problems becase of this horrible disease. I do my best to try and get my mind off the pain by walking, reading, searching for others who share my disease, and exercising. My doctor has also put me on disability. We cannot let this disease get us we have to beat it. Have you heard of the different types of surgeries out there? My doctor said I may need a stent. I just had an MRI done of the pancreas so they can see what options I do have. Hope things get better for you. I can relate to what you are going through

I feel your pain, i was diagnosed with CP last year after 5 plus yrs of suffering with symptoms, I was told I had A bad case of IBS until a CT scan showed that my pancreas was completely covered in calcifications and scaring.I am also a mother of three teens and have been married to a wonderful supportive man for 21 yrs although my family is very helpful and understanding this illness still causes stress on myself and my family...I can not do alot with them most days stuck on the couch resting and if I do push myself i really suffer later for it. I try to be happy and enjoy what I can but it is so hard whenu feel like your dying sometimes...I see two pancreas specialists and both of them have strongly recommended that I have the surgery a total pancreaectomy and islet auto transplant in Minesotta, i live in NH, so it is pretty far away and a costly trip not to mention the risks are so great, i feel some people are pressuring me to do it now but I am not ready, I need to research more and save for this trip also...I have recently lost my job that I have worked so hard to get as far as I have in my position as a State worker in a law office, I am now in the process of appling for SSDI, just waiting for ananswer wheather or not if I qualify, I hope it goes through i have no energy to deal with fighting anymore.I wanted some feed back if possible on SSDI experiences and how long it took for others to be denied or approved...please help!

Any update on your SSDI? My husband thinks I should apply but in Maryland there is no category for a Chronic Pancreatitis.

Hi my daughter has been suffering from chronic pamcreataitis since she was 5 yrs old and not diagnosed until she was 10, at one time I almost lost her. Hope came after she was successfully treated thru ERCP procedure at Asia's best gastroenterology centre in Hyderabad ,INDIA , They have the most experienced doctors and with very high success chances. I have been there 5 times for STENTING and stent removal for my daughter and with the help of doctors and god grace she is completely fine with a record of no attacks in the last one and a half years. You need to visit Asian institute of gastroenterology in Hyderabad in am certain they can get you back on track. Little effort required but it's worth your life. GoD bless. Max

I have had chronic pancreatitis since I was 6year old and been living it 35years I am now 41years old and the pain is just getting worse just had a bad attack lasting more than 8 weeks and still going the doctor's in this time I have this illness haven't done anything to help only giving me 8 tramadol a day to take have been working full time but in and out of jobs because I have a lot of time off with chronic pancreatitis and now just lost the job I had I cannot believe this illness don't come under disability it's insane to think your on your own with chronic pancreatitis thanks to the government

1 More Response