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Living with Chronic Pancreatitis

Posted Sep 28 2008 6:17pm

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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