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

15 08 2010
Richelle

I have recently been diagnosed with CP after having four bouts of pancreatitis since 2003, the last which began in May 2010 has not resolved. I have a stricture in my common bial duct and I am missing part of a duct in the pancreas. I have never been a drinker not even in college! I have a duct anomaly that has caused this problem. I have canceled surgery three times because the doctors say the complication rate in my case is high and I am scared to death. I know that I have to eventually have surgery and I am willing to try anything at this point as the pain has become unbearable. I have to take enzymes and even then the food rolls right through me. They are testing me for diabetes because my blood sugars are not stable. I am so scared and cannot see living like this for years, something has to give. I never thought to add a pain management doc and am glad to read an earlier post that suggested this. I plan on doing this asap so that I can hopefully get a handle on this. I was so saddened to read a post about a child with this, I can’t even imagine. I am so sorry. If anyone has any other suggestions about how they deal with this I would love to know.

30 07 2010
A

Sasha…mirrors the sentiments- stumbled across this place lookin’ (albeit w/o much hope) for new research on pancreatitis. Just undertand FULLY -thx

17 04 2010
Janet Louise

Hello to those of you who may know anything about Chronic Pancreatitis.
Is there anyone who can tell me if they know of anyone living a long life with this disease. All blogs seem to be from people diagnozed in the last few years?
Some say, if you look after yourself, you can live a full long life? Yet when I enquire further or ask various doctors if they have had any such patients, the answer is no. Any feedback from anyone, if there are any such people who go for another 20 or 30 or more years with CP, I would be most grateful to hear from you.
I was diagnozed with CP in January, 2008, yet I have no pain. Therefore, unlike the hellish suffering most CP patients have, where the pain guides them on what their body can tolerate and not, I have no such reaction to anthing I have eaten. I am from Queensland, Australia, and unfortunately was only told not to drink alcohol, but only recently learned how important a low fat diet is.
A nutritionist friend is compiling recipes for this condition and look forward to seeing them online.
Again, any info anyone may have about any stories of people living decades with this disease??? Or is this a myth?
Ta Janet Louise

23 05 2010
Joetta

If the doctors you are seeing don’t know of anyone with CP who has lived a long time, maybe you should consider find new doctors. People can and do live long lives with CP. You must get a good doctor who specializes in this. Check out yahoo groups. There are several and you will find many who have CP who have lived with it for a long time.

30 07 2010
A

Yes…was diagnosed in 1994-Been thru pseudocyst removal as well-Still kikin’ even after a heart attack 2 yrs ago…There is a semblance of hope.

13 07 2011
Mitch. B

yes you can live long, watch what you eat (low fat), take pancreatic enzymes with all snacks and meals it rests your pancreas, and every year get a pre-screening test called an EUS of the pancreas to detect cancerous growth. Thats it, prey a little and go about your life, unfortunately it is what it is! Could always be worse! Just remember no alcohol ever! If you develop diabetes maintain it under control this is key, if it gets out of hand so will your pancreatitis, diabetes trumps pancreatitis so keep it under control. hope this helps! Good luck and GOD bless!

Mitch. B

16 04 2010
Erin

I had my first attack of acute pancreatitis in March of 2003, when I was 26 years old. My second came 2 years after that, in September of 2005. Following that attack, I had my gallbladder removed on the advice of my GI, even though he said that he didn’t see any stones. When they removed it, they found what they called “sludge” and said that I shouldn’t have any more problems. One year later, in October of 2006, I had a third, and at that time, the most severe attack to date, which required an NG tube (tube that is fed up your nose and into your stomach to pump out the extra bile, etc that had built up). I was a typical young, social drinker, occassionally having too many when out with friends, but that wasn’t often. I underwent several MRCPs and CT scans, with nothing jumping out at the doctors to suggest a cause for the attacks.
Jump to April of 2009: After 3 years of not touching alcohol and not having any problems, I suddenly had another attack, my fourth. I was hospitalized for 6 days, and had to fire my long-time GI doctor in the process. In front of my family and others, that despite the CT scan showing inflammation of my pancreas, and my amylase and lipase being very high, he insisted that I was only there seeking drugs. It was apparent that he was not going to be a sympathetic and effective doctor through pancreatitis if he had convinced himself that I was a druggie, despite evidence to the contrary.
When I was released from the hospital, the pain was just as bad as when I went in, but my enzyme levels had come down. I battled with the pain for 2 weeks before I had to bite the bullet and return to the ER. This time, I went to Cleveland Clinic in Florida. I was hospitalized for 12 days, and while I was there, my new GI doctor performed an EUS (endoscopic ultrasound.) It was with this test that he was able to diagnose me with chronic pancreatitis, as I met 6 of the 9 criteria. This new GI doctor was very knowledgeable about pancreatitis, and one thing he said convinced me that he had my best interests at heart. He said, “While I know a fair amount about this disease, I am far from being an expert. I urge you to seek a second opinion from Dr. Bishop at Mayo Clinic in Jacksonville, since she specializes in pancreatic diseases.”
So now I have a diagnosis that is terrifying. I don’t touch alcohol (I won’t even use mouthwashes that contain alcohol), eat under 10g of fat per day (any more than that and I begin wishing I were dead), and have to take 6 large enzyme pills with every meal (by the time I swallow the pills, there’s no room left in my stomach!!). The enzymes are supposed to reduce the steatorrhea (oily, light colored stools), however I still suffer with that and diarrhea on a regular basis. Pain is a near constant, and as others have stated, each meal is something to be feared.
To top it off, although my doctors at Cleveland Clinic acknowledge the severity of the pain associated with CP, they all refused to prescribe any medication to relieve the pain. I live in what is apparently the worst county in the country for abuse of prescription pain medications. The pain management doctor I was referred to at the Clinic only wanted to do a celiac plexus block, and my GI did not feel that that was appropriate. I did not fully understand why at this point, only that it does not have a wonderful success rate. My PCP was able to refer me to a pain management doctor in another county, and I scheduled my appointment with him. At the appointment, he clued me in on why the celiac plexus block is discouraged in my case: not only is it not likely to be effective for any length of time, the procedure entails injecting alcohol to the nerves, thus deadening them. According to my doctor, this procedure is not normally advised for patients who do not have a terminal illness. He said it bluntly, but nicely, that “Terminally ill patients aren’t likely to survive long enough for the negative effects of the CPB to appear.” He now has me on a regimen of 2 different types of pain medication – one that I take twice a day, every day, and the other for breakthough pain. Because of the abuse of medications, refills cannot be called in, and I have to travel 110 miles round trip once a month to pick up the written prescriptions.

Please keep up with this blog, as I know the assistance and reassurances that I as well as others get from reading that our issues aren’t unique to us, is priceless.

15 04 2010
Michel

My 8 year old has been diagnosed with chronic pancreatitis. She has been in and out of the hospital nearly everymonth since August of 2009. I am desperately trying to get some insight on this disease. Your blog is very helpful. I still have not met another child dealing with this. I would love to be able to talk to a parent. My daughter has been out of school for nearly two months now. I have no idea when she will go back as she is still in the hospital. They are not sure what has caused this disease….they are still trying to get this attack under control so she can get out of the hospital. Any advise would be appreciated as I feel very helpless.

19 09 2011
Ronda

My 10 year old daughter has recently been diagnosed with chronic pancreatitis. We have had 3 hospital stays within last few months. She never has one day without the pain. It is very frustrating because I cannot help her. Her most recent stay they started her on a pain medicine that is supposed to help with nerve ending pain. I noticed your post was a while ago. Any improvements on your daughter since your last post?

26 09 2011
jodi

How is your daughter doing now? I have an almost 15 yr. old daughter diagnosed in Dec. 2010 with acute pancreatitis. 4 feeding tubes and 5 hospitalizations later she is still in excruciating pain daily. She missed the last 1/2 of 8th grade and is barely making it two hours a day (when she is able to go) to high school this year. We too are desperate for help. Doctors seem baffled by the pain and seem to think lots of it is psychological.

9 04 2010
Jason

I am 39 yrs old and i have been diagnosed with CP. I fear for my family every day, just because i am not sure what the outcome is going to be. Praying everyday for an answer on how i am going to deal with the pain, getting a job, can i get social security for being diagnosed with CP, is there dissabillity for this? To many questions we have to ask are selfs everyday, where are the answers, anybody know? On top of having CP, I have diverticuiatis, and sever arthritis, and just getting better from a neck surgery. So my life has been turned upside down. So glad i have a loving wife who believes in tuff love, When i feel depressed she kicks me in the butt and makes me go on, sure some days she knows that the pain is to much, but she will still try and push me to keep going. So i guess i am saying we must keep on keeping on. Starting to think i need a better pain med, mine are very low keyed pain meds, maybe thats why i can’t function day to day. It seems like i get maybe two days a week where i am fortunate to be able to function some what. I used to have so much energy now i have none, and it really bothers me. I have three kids ranging from 4 yrs old 7 yrs old and 11 yrs old, Pretty hard to keep up with them, makes my heart hurt because some days i can’t do anything with them. I hope for the best everyday, and pray for some answers for all are questions on CP. Praying for all with CP!

13 07 2011
Mitch. B

IN SAME BOAT

20 07 2011
chris

hello jason,
i was diagnosed with cp @ the age of 21, i am now 32 and i receive social security disability, so yes you certainly can get it for this insidious disease. if you need better meds then it is your right to have them, if your doctor will not listen then you should find a new one. we have all been through this i am sure, just remember that you have to play their shitty little games but you can win those games. they will try to force you to do all kinds of things you may not want to do i.e surgeries that don’t always work or can possibly kill you or leave you a diabetic but you have a choice my friend, remember that, theres always another doctor but you only get one pancreas and you need it. i suffer with you brother and if we all stick together and support one another we can all win, your friend from new england, chris 🙂 anyone else need help or have any questions please let me know, i have lived with cp for over 10 years and i would love to help if i can.

31 03 2010
Mark

It’s great to hear your stories. Im 30 years old and recently had my second acute pancreatitis attack (first at 25yrs old). I’m now out of the rural hospital I was in and now im going to follow up with a “gastrointeroligist” (or whatever its called). This time my pancreatitis has been very different than the last. for one the hospitalization was much longer and the pain hasnt changed very much since i got discharged from the hospital one month ago. I am terrified everytime i eat as I suddenly hit a scary point while im eating at every meal. It’s the fear of another attack.
Since my first attack i gave up on sugar. Now with my second i gave up fat and cigarettes and I dont drink. Apparently i will have to use pancreatic enzymes to help restore normal BM’s (got the ones that dont completly flush and often the pale ones).
It’s crazy to stop eating sugar, fat (max 40g per day), and quit smoking and have ongoing stomack pains. I can feel depression coming on, especially that no-one understands the ongoing pain as it’s not visible to anyone. My doctor said it’s abit like a heart attack the more you have the less good it is.
My tip to you pancreatic alcohol drinking types is make sure you adapt your life to live longer as you only live once.
I’ve lost 35 lbs (now 175lbs) since my attack a month ago. i’m scared im becoming a skinny weak guy.
Wish me luck has i havent been diagnosed with CP yet, but as the pain continues i’m worried that i maybe.
greentreemediadotca@gmail.com

1 12 2009
Allie

Hello.
I’m 19 and I was diagnosed with cp about a month ago. I’ve been dealing with chronic pain for nearly 4 years. The doctors told me the cause of the cp was that I had one of the cystic fibrosis genes. I know that it is very rare, but I was wondering if anyone else had the same thing. I definitely understand the pain thing. It’s like if you don’t take the pain medicine, you basically can’t survive. But taking it (for me at least) makes you into a zombie almost. I’ve been dealing with panic attacks lately also, so the medicines all mixed make me so tired. I never have any energy. I don’t really understand how I’m supposed to live fully especially because I haven’t even went to college yet and I’m just so young. I was supposed to attend college this year, but with all the doctors visits and the bad days (which there are a lot of) I wasn’t able to. I am currently on a fentanyl patch and an oral pain medicine, and phenergan for the nauseousness. I still feel some pain, but they do make things better. The only thing that sucks is that I’m on my step dad’s insurance and my mom and him are divorced, so I only have like 1 week of insurance left. I’m not really sure at all what I’m going to do. I’m really scared and it is nice to know that there are others out there who are dealing with this too. The only reason I really wrote all of this is that I would like to talk to someone who actually understands.
Thanks for reading.
my email is alexandria_the_great9009@yahoo.com if you’d like to write me on there.
thanks

23 10 2009
cheryl

my husband has also been diagnosed with pancreatitis in 2007. he has been very sick and has had many very painfull attacks. he also has been hospitalized many times. he also has been told he has to quit drinking, but the only time he slows down is when he is so much pain he can’t function. he can’t work anymore and is very depressed. he had to retire at age 50. we don’t do anything anymore and now i am responsible for taking care of everything. we have a beautiful little18 month grandaughter who loves him dearly and i only wish he would realize how much we all care. i’ve looked up many sites to see if i can do anything more to help him and i came across other people dealing with the same problem. it’s helpfull to know there are other people out that i can possiblbly talk to. cheryl

28 08 2009
Chanel

Hello, my name is Chanel and my husband has Chronic Pancreatitis. It all started last year Jan. 2008 when he was first hospitalized for Acute Pancreatitis. He spent 14 days in that time. Six months later he went back into the hospital with AP. Next, Feb.2009 he had another attack and also Mar.2009. Just 2 days ago Aug.27,2009 another attack. Now he has been diagnosed with Chronic Pancreatitis. My husband is only 29 yrs. old and he was a severe alcoholic. His whole family, but he is the only one sick. He has slowed down the drinking to the weekends, but he over-indulge I believe to make up for during the week. I have tried everything to get him to stop drinking. He has a 5 yr old son whom I have been raising since he was 2. I don’t know what else to do. The doctors have told him he will die soon if he continues. I’ve even threatened him with divorce because I can’t sit back and watch him kill his self over a $12.00 bottle of Brandy. He has had the psuedo-cyst but they weren’t very big. They have not talked about taking out his Gallbladder. I decided to get on-line and research CP, and hopefully communicate with people who are dealing with the same thing. I have developed migraines and depression myself because of the tremendous amount of stress i’m under. He completely neglect his child because of the alcohol. PLEASE, do any have any suggestions for me. I’m crying out for HELP. You may send me a personal e-mail at chaneltruitt@att.net. Thx for reading.

Sincerely, CRYING FOR HELP 😦

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