Living with Chronic Pancreatitis

11 05 2008

This post is for those curious about Chronic Pancreatits & its effects on me and others. There are loads of entries on this on my chronological page. I normally wash over this topic because i began this blog for RA. In fact, I thought if I mentioned both diseases that it would get too confusing for everyone. Just in case you’re just joining my blog I have loads of stories about getting a pain medicine pump in Feb 07 that literally saved my life. [Me&My Pump I/Me&My Pump II]. Pancreatitis is more immediately life threatening to me then RA will ever be. I suppose that’s why I began this blog about RA… it is more manageable, more understandable, and far less painful. Sure – it makes it so I cant walk from week to week – but it’s pancreatitis that scares the living shit out of me and makes me get on my knees and pray.

So this blog entry is entirely about pancreatitis and looking back to what I’ve been through by myself and with my Jax …I recently received a touching comment that said : Hi Sasha, Thank you for your blog; it is the first I have seen on living with CP [chronic pancreatitis] . I’ve been ill with CP since 2004. Most recently I had a Whipple procedure, but since half the pancreas was left behind, it was a bit of a crap shoot. Before the surgery, the extent of the CP was not know. Now we know my pancreas is riddled with it. The main issue I am struggling with is work. Before getting ill I was a workaholic- a professor at a research university with a lab of 10 people. I don’t know how my lab has stayed together over the past few years. Deep down, I know it is not possible for me to work on my previous terms, not even close, and I need to find what is “right” for me. Do you know what kinds of solutions people with CP have come up with regarding career? I would really love to hear about people’s creative approaches to this. With thoughts and prayers, Diana

I COMPLETELY UNDERSTAND YOU DIANA! How the hell can I work with pancreatitis? Is it simply mind over matter? Is it simply that I got used to pain at a very young age? Is it that I want to be dead every day from the pain and somehow prevent myself from actually going through with it? It is a daily battle, literally even though I am through the worst of it now that I have my pump. I am still on oral pain meds along with the morphine in my pump. Before the pump I was only able to be “alive” 2-3 days a week. I was beyond depressed, I was beyond unhappy.

I would never have made it to 2008 without my pump. That said, the pain pump prevented me from being dead – but it is an ongoing daily battle with pancreatitis. It is possible that it is auto-immune disease related, but the truth is the docs don’t know why I have it at 35. (I was diagnosed at 29). It was okay after the first implosion of acute pancreatitis… but became apparent that I had to take mass quantities of pain meds to make it through a day. Anything I eat STILL TRIGGERS the pain. Every meal is frightening. Every meal is my potential end. [Read more about my depression]. It’s only been more recently that I can see the future and be happy abut the days to come.
…….
I was told to NEVER have the whipple surgery because it would likely have zero outcome change and would likely make matters worse for me. This is exactly what you are mentioning. My docs were at UCLA Medical Center at the time and I felt that they were more progressive than Mayo Clinic in some cases. I feel very lucky I was in such good hands. The ERCP proved I had the issue to begin with even though the acute pancreatitis should’ve done that… the problem is that the pancreas can seem like so many other things at first.

I completely relate to everything you have written!!! Running the lab right now is simply the fact that you are on auto-pilot. I understand. Before i got the pump I tried plexus blocks, experimental blocks like the neuro-stimulator.. but nothing helped.

I can hardly believe I made it through that extreme pain. It seems unbelievable that I found ways to manage under that horrific nightmare. When I look back I remember thinking the pain would never end. It seemed my life would go on like that forever. There was no end in sight. I could see no way out of that tunnel. It was a dark and lonely place – but worse… I would often think of different ways to die accidentally.

The real issue is that you need to have a good pain management doctor. Oddly, I did not get the right care until i had both a GI AND a pain management doctor. One was not enough. I would go to my GI docs office in shambles and he’d put me in the hospital for 7 days at a time. How could I keep my business running under those terms? I couldn’t. Somehow I managed but with crummy work to show for it… The only reason i started going to the pain management doc was because my GI was being questioned by the state (literally) regarding the amount of pain meds he was prescribing me. I was taking demerol and many others and they could hardly touch the pain.

Let me make it clear – I WAS NOT a pill head, in fact, I refused to take the medicine so much that I kept ending up back in the hospital. Eventually I got to the pain management doc in Los Angeles and it totally changed my life. [not right away of course] At first I wanted to kill him because I was in so much pain and he wasn’t making me better right away. He did get my pain under better control with the right medicine combo. But still, I was beside myself and so depressed. I was hardly working and the work I was doing was painful and not good. It took about a year to get my pump…. and that’s when I began this blog.

Now I take very little medication. it’s a miracle truly. I had to overcome 2 thoughts: 1) I had a disease that required opiates in order to live [that was a very hard issue for me to come to terms with]. 2) I would have to get a giant piece of metal put in my body forever. I am NOW TOTALLY FINE WITH THESE THOUGHTS THAT WERE EARLIER TO PAINFUL TO BEAR. They saved my life and now I am finally living and having a good quality of life even with an additional chronic disease.

I hope this helped and please feel free to comment back in the future. My thoughts and love are with you. I know the darkness you are in. The only way to work is to get your body out of these extreme pain you are in first.

love, Sasha xoxoxox

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35 responses

4 09 2011
Irene

I had first attack at age 11. My mother had gall bladder removed and still had pancreatitis all her adult life and died without ever finding the cause. Seven years ago attacks started at the age of 48. My attacks have stopped because I discovered allgeries to sulpha drugs and parabens that are added to meds and foods as a preservatives. After many tests and doctors, and expense, I figured this out for myself. (God answered my prayers.) Healthy foods make us feel better because we are avoiding foods with msg’s, etc. The last attack I had, one simple Benedryl stopped the pain inside of an hour. The diuretic causing my attacks was hydrochlorothiazide, which is prescribed to millions of people! I Pray to God this info will help someone!

11 07 2011
HELEN SANCHEZ

HELLO, my name helen and my mother just get the new that she has chronic pancreatitis.This year and she is 49 yrs old.And i dont know what to do.I’m new to this.Someone PLEASE PLEASE HELP ME. The doctors said there isn’t anything that we can do.so as a daughter i’m dieing inside.so how do i get help ?If you have anything that can help us with this.You can e-mail me at ADRIAN_842091@YAHOO.COM THX YOU.

23 06 2011
triona murray

Crying for Help with a lot of others..
I am a nurse with CP.I have had three stents todate.on opiates and getting worse daily.I was never a heavy drinker,although I did drink.
One of my goals in life is to change the attitiude about Pancreatitis,ESPECIALLY THE MEDICAL WORLD>How many cardiac patients,or other diseases are grilled about their drinking.I feel like asking,Will the amount of alcohol consumed,if any, determine the treatment. I believe many people use alcohol to numb out the pain,as lots of cancer patients reported.Do not get me going on the drug seeking bit.Why are street drugs so available.Its where many people go ,when the medical world will not listen.
TM

17 01 2011
Lauren

Hello – My name is Lauren I am 29 years old and I live in the Boston area. I was diagnosed with CP in 2008 but I was born with a cyst on my pancreas that produces stones that fall into the bile duct causing attacks. I had my first surgery at 2 and 1/2 in 1983 and lived most of my childhood and adolescence pain free. At 21 I had my first acute attack and after multiple ERCP’s decided to have surgery in 2005. At the time I was so naive I beleived the surgeon when he said I would be all set for the rest of my life. There was hardly any follow up to that procedure. I switched hosptitals in hopes of having better care and I do love my current GI doc. I had another surgery in 2009 (a transduodenal spchincteroplasty) and again I believed the surgeon when he said this would fix me. Since the surgery I have had multiple attacks, hospitilazations and I now take pain medication and nortriptyline for chronic pain. My last acute attack was last week and my lipase went up over 9,000. I was in the hospital for 5 days and since getting out I am in pain constantly. I got married 4 months ago and I would be lying if I said my illness hasn’t put a huge strain on my relationship. Also I really want a baby. I do not drink alcohol and I am trying to eat better. I just feel lost I have increasing depressiona nd anxiety and I feel like if I keep compalining to loved ones or at work I will really be in trouble. I have been trying to educate myself and found this blog it is the best one I have ever seen in terms of information and honesty. I just wanted to ask for any advice or tips on how to manage my chronic pancreatitis without losing my mind and my husband.

27 12 2010
Shauna

My husband is 35, about 6 years ago he had his first bout with Pancreatitis. He is not a heavy drinker, no drug use and no triglyceride problems. The fist go round (in ’04) they removed his gall bladder (found the “sludge”) and said “you will never have this again”. Then in ’07 after a round with a stomach bug we ended up in the ER to find that he was having pancreatitis again. This time they dialated his bile ducts (with the reasoning being that when we have a stomach virus the ducts shrink, therefore causing the flare up); and once again “you should never have to deal with this again”…. (yeah right). Now as of this moment on Dec 27 ’10 I am awaiting bloodwork the doctor ran today to see if the pacreatic levels are elevated. Any advice on what I can do to help my husband? Oh and he has also been diagnosed with Crohn’s Disease….

17 12 2010
Susan Pribula

My son-in-law who is 40 has CP. He followed everything the doctor told him to do. There are several doctors involved. He went to pain management and every pain medication they tried him on were harder drugs than the drug that helped him. All he asked for was percaset. That is the only drug that seems to releave his pain. The doctors dropped him because they said he broke the contract. My son-in-law did not break the contract the doctors did. Just because he could not take the hard drugs they gave him. He tried them and he had reactions to every drug. So now the doctors will not take care of him and he does not know where to go. He is in so much pain. Even the hospitals will not treat him. If anything they were the ones I felt were turning him into a drug addict which the pain management doctor put on his medical records. He is not a drug addict or he would be taking those drugs. One of the drugs was as strong as herion. Percaset is not that strong and they won’t give it to him, but it is the only one he can take without a reaction. So what do you do. I am trying to find a doctor that will help him. If anyone knows of one around Ohio please inform me. The poor guy is getting depressed and can not work under all the pain. He is loosing weight and is afraid to eat. He is on a light low fat diet but still has the pain. They are even willing to go out of state to find a doctor will help him. Right now all the doctors he sees is in the Cleveland Clinic which I feel they use him as a ginny pig. I do not like the Cleveland Clinic. That is where every doctor seems to send you. If makes me sick to see that doctors take an oath to help people and they refuse. I am ready to try the media and expose this problem as so many people are in pain with this disease and no one will do anything about it. You find a drug that helps but they won’t let you take it. If anyone has a suggestion please contact me.
Thanks
Son-in-law needs help.

8 11 2010
pam

Reading all these stories it makes me sad, and yet comforted that we all seem to share similiar frustrations. My 71 year old dad, who has been a pretty good functionion martinis every night at 5, recently called 911 in excrutiating pain. This is like mr tough guy, so for him to call it must have been incredible. he lives in a rural area, and none of his family even knew he was in the hospital for 3 days. when we all flew out, we wee told his diabities was out of control, his heart rate was in defib, over 150, and he had pancreatitis. He has been in the hospital going on 3 weeks, and they are giving him Dilaudid(sp?) FOR the pain. They removed the gallbladder, but that didnt seem to make much difference. He has beem in so much pain and just seems to deteroate, his has been on tpn for 2 weeks, and evertime he tries to eat, gets sick. His mental state has gone way down, He keeps telling us to disconnect him and let him go, but there is nothing keeping him alive, just iv and tpn for nutrients. I to have been searching trying to see what are other options.

20 10 2010
mike

hello, I just got released from a 40 day hospital stay and diagnosed with CP.
I am 56 and this is the first encounter with CP. They removed 90 percent of my pancreas and I had 2 large cist that were infected. I had 5 drains in my cist
that required draining daily. Over 750 ml of infection was drained at the time of the operation. What a life changing experience. I also have pain when I eat.,however, it does make a huge difference when I eat a low fat diet. The pain
is not unbearable at this time as the sugery seemed to do the job. I used to drink beer social type but sometimes benge drank. No alcohol now. No problem with that. Coffee however is hard to give up. I dont smoke never did.
I do take emzymes at meals . As a result of CP, I now am type2 diabetic and require insulin twice a day. I don’t have the pain that most experience. Why?
Is it the result of the type of surgery? . Two early to tell maybe. I had no history
of pancreitis as this is all new.

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