Friday, December 28, 2012

There is always hope....

I have been through alot.......I posted about some of it here and there but alot of it I kept quiet about, kept it to myself.  I am a member of several groups regarding pancreatitis and how to live with it, life without a pancreas, etc.  and more and more I see people joining who have the same problems I use to live with and I see people out there as scared and sick as I use to be.  I try to help...but never sure if I am doing or saying enough...thought maybe this blog might help some of them. I have contacted tv shows and newspapers hoping to tell my story, not for fame or fortune but so people know there is always hope no matter what, there is always hope.

For me, it was April 2002, was asleep and woke up to severe stomach pain, nothing I had ever felt before.  So I got up and sat in chair for a couple hours as the pain got worse and worse.  Started scareing me a little bit so I woke my boyfriend up and said something was wrong, thought I should probably go to the Emergency Room.  So he took me.  This was 7 am.  Got to the ER and told him I thought if I tried to get up and walk in I would surely pass out.  Trust me I had never experienced pain like this and I hate bringing attention to myself and all that so when I said I cannot walk in I was not exaggerating.  So they wheel me in to the ER.  They ran tests, took xrays, etc.  the Dr. came in said nothing was wrong with me and I could go home.  I grabbed my boyfriends hand and told him something was wrong.......well he actually golfed with this ER doctor and he told the ER doctor and he told the ER doc that i am never sick and something was wrong.  So ER Doctor reluctantly agreed to keep me observation overnight. 

So I went up to the 5th floor.  Pain continued to get worse.  It got so bad that I found if I laid on my left side in a certain position I could tolerate it, moving was excruciating.  Still they waited.  They called my physician a few times, she never ordered pain meds she did order a tox screen.  You know i might be doing all this just for pain meds.  Unbelieveable.  I will share more of this experience later.  I want to get to the meat of it all first.

So long story short, they transferred me to ICU at like 3 am, my blood pressure had dropped to like 30 over 50.  I was not doing so good.  Still they waited and finally at 9 am they called in a surgeon.  Dr. K.  He did a cat scan.  during cat scan as I was laying there more than half out of it.  Doctors told nurses well we have to operate.  you guys waited too long to call me and this woman will never come off the table.  but to CYA we need to operate.  So he did.  I am guessing since he assumed I would not make it that he kind of did a slop job.  He knicked my pancreas while removing my spleen.  My spleen had ruptured and I was bleeding internally.  I actually did die, they shocked me back did the surgery and somehow, some miracle for some reason here I obviously made it.  Dr. K even came in a couple days later and said he had no idea how or why I was still here.  After the surgery I needed 8 units of blood, I had lost so much blood.  So....after quite a few days in ICU and then in step down and then in regular room I got to go home. 

About a week or so later.....i had stomach pain and just assumed it was from the surgery, etc.  a few months later the pain got worse and worse. I went to the local ER they said nothing wrong, even said I was probably just constipated.  ha! not the case.  After several trips to the ER and changing doctors, finally had a dr. do further testing on me.  Found out for the first time I had something called pancreatitis.  That was the first episode.

That first year there were just 2 attacks.  the next year there were about 5.  I didnt understand what the hell was happening.  Of course, you went through all the crap....ER checking to make sure you werent there for pain meds, people assuming you were an alcoholic, etc. 

In 2006 I spent a total of about 165 days in the hospital with pancreatitis episodes.  This did not even include the 30 day stint i had to spend in the nursing home...or was supposed to spend....lol..  By now I was searching for help.  I needed help, I wanted solutions, I wanted answers, i wanted my life back again.  My doctors had suggested going on percocet, 10 mg (more if needed) 4 times a day.  I refused. i had heard so many stories of the people who got hooked on it and the horrible time they had getting off of it. i saved the pain pills for the worst of times, took them to sleep they never took the pain away anyways.

Doctors here, doctors at OSU and Cleveland Clinic told me I needed to learn to live with it.  To expect at least six flareups or more a year and learn to accept my new life.  This to me was unacceptable.  How is it living if you are in the hospital all the time.  How is it living if you cant work, you cant plan things, cause you never know when you are going to have a flare. 

I will cover guilt later too, but my God.  Everytime I had a flare up, I knew what it was, I would stop eating, just sipping what I needed to sip, and tried like hell to make it go away at home, when i got to the point where I could not go five minutes without pukeing or dry heaving, and the pain had become overwhelming, I reluctantly would give up and go to the ER......and of course me admitted usually for no less than 10 days.  Funny when I was at home I wanted my kids to have a normal life I would hide it, try to hide it,  lol, try to act like things were fine.  Then I would finally realize I had to go.  There were a few times where I was told I had just about waited til it was too late.  Some nights I swear to you I would cry myself to sleep and hope and pray I would just not wake up.  Seemed easier, you know? 

So I started researching pancreatitis and cures and solutions on the internet.  I found a clinic in Cincinnati at the University of Cincinnati.  UC Pancreas Clinic and I called and they agreed to see me.  What a blessing.  After going through the intial exams and all of that they realized there was not an easy solution and I was introduced to the doctor who would eventually save my life.  Dr. Syed Ahmad, from Univ of Cincinnati!! WONDERFUL EXTRAORDINaRY MAN!

He offered a solution, total pancreatectomy with islet cell transplant. However the way the hospital was set up and insurance and all, it would cost me about $25,000 out of pocket....$$ i did not have.  One thing you learn about chronic illness it takes everything it possibly can away from you.  Money, friends, jobs, life!!  I kept having attacks and it seemed most of the damage was in the tail of my pancreas.  So Dr. Ahmad offered me a surgery known as the Whipple.  So we did it.  I will write more about this later, too.  In a different blog, i wanted this blog to be an introduction and didnt want to give you all the information at once and bore you to death, lol.

So i had the whipple and I will tell you this, its one hell of a surgery and its the hardest recovery i have ever been through.  I had the Whipple in October....I was starting to recover well by March and was feeling half way back to normal by April.  it was tough.  I had a few months of pain free living.  Then in about August it came back with a vengeance.  Right back to where I was, Chronic Pancreatitis here we go again.

By this time the hospital had changed and the insurance had changed and i qualified for the Total PAncreatectomy with islet cell transplant.  It was gonna happen in May.  Luckily, Dr. Ahmad, was worried I would eventually get to that point and when he did the Whipple he did it so that a total pancreatectomy could be performed without alot of trouble or risk.

While the recovery for this surgery was not quite as hard it was long and when they tell you it takes a year to recover believe them and dont be too ahrd on yourself and just learn to take it one day at a time.

For all the people reading this that are facing this surgery, I want you to know a few things:

Being scared and nervous aobut this surgery is normal, it is to be expected.  you are going into something that is scary, has its own risks and you know going in that you will be changed coming out.  Diabetes is something you are facing as well.  none of it is easy and its scary as hell.  Up until the morning of my surgery I was ready to turn tail and run away.  I was scared to death even on the morning we drove down to Cinci for hte surgery I was ready to turn around and go back home, checking in at the desk on the day of the surgery, I seriously considered saying sorry I changed my mind, every single cell in my body was telling me to run.  Scared Shitless is an understatement.  running away would be the easy part...staying was the hard part.

Take your time in recovery.  But when they come in and tell you to get up and moving a few hours after you wake up from this surgery, lol.....yep you are going to think the nurse has oviously flipped her lid, you have so many things hooked up to you you need at least 2 iv poles.  and you first thought is how in the hell do u expect me to get up, I look like a sick science experiment that went horribly wrong!!  But do it.  trust me...do it.  they want you to get up and sit in a chair, even if its just for a few minutes...just do it.  I did it, and I sat there for about 4 hours.  it was great and I felt like i had my first victory, lol.

The one thing I noticed when I first woke up from the surgery!! That constant pain that felt like it was drilling through me every single day was gone...I could not believe it....even with the pain from the incision I could tell that that constant, driving stabbing horrible pain was gone.  Another victory.

Next morning...guess what you gotta get up and walk..yep with 3 iv poles and what looks like 100 wires and tubes coming from everywhere.  DO IT!! just do a little at first and then push your way through it.  The day I left the hospital I walked a total of 4 miles....yep!! round and round that wonderful hallway.  The walking helps trust me.  it gets things going and moving and makes ur feel better and stronger and each lap feels like a victory.

Life after the surgery...yep its different, yep you may have to tkae insulin, you will definitely need to take your enzymes, etc.  Just do it. Even with all that its still a hell of a lot better life than you had before.  Its basically pain free and your not vomiting and in agony anymore.  Do I have bad days, yep sure do.  but even my worst day now is better than my best day before. 

I will not lie and I will write about the setbacks later, there have been a couple.  2 yrs after the TP/ICT I got sick.  long story short.....had a blockage caused by scar tissue from all of the surgeries. And there I was again having another abdominal surgery.  It sucked but I did it and recovered and here I am again.

Lots of things have changed....on a bright side, i have lost alot of weight and feel good about it, I have not lost too much, I was heavy, too heavy.  I have gone from a size 20/22 to a size 10.  I am on Byetta, 2 injections a day just 5mcg each.  Not a huge dose at all.  My islet cells are happy and doing great in my liver.  My last A1C was 5!! and that is awesome especially for someone without a pancreas.

To this day I still hear from Doctors, nurses, people, oh I didnt knwo you could live without your pancreas.  lol.  YES YOU Can!! and I can eat pretty much what I want.  I watch the sweets obviously and for me i hate diet stuff so i gave up sweets, I dont do diet pop, i dont use saccharin or the other fake stuff either if it needs it I dont eat it, simple as that.

So when you are facing this choice and you are scared and you dont know what to do and every single cell of your being is telling you to run run run........its ok...its gonna be ok.  think of pleasant things, think of not having that pain you know the one, the pain that starts around your stomach under your ribcage and then it radiates through to your back as if you were impaled on a rod.  that deep pain that is almost difficult to point to it as it is in the center of you.  That relentless, ever consuming pain with a burning sensation, sometimes almost a gnawing, grinding type pain.  I would often describe it as feeling like there was a basketball in my gut that was being inflated and pushing up into my ribs, through my back, while someone had a wide belt under my rib cage and was continuously tightening it.......etc...

I will also tell anyone facing this surgery or this disease.....you want to talk, you need to talk, please feel free to contact me, i will call you, email you, whatever I can do to help you.  I am here.

I think that is enough for tonight. I will write more tomorrow, and begin from the start and proceed...I hope I am able to help at least one person through this blog. 

I know through my groups I have met so many wonderful wonderufl people!!  Some I will probably never get to meet in person.....some I have already met in person and all of whom I pray for.  If you have been diagnosed iwth Chronic pancreatitis...do not lose hope...there are options and these options work!! if they didnt I would not be here today!! :)

Thanks for reading!! Take care and I hope you have a pain free night! 

~Mary~





22 comments:

  1. Mary, I am so sorry to hear about your struggles with CP. I'm glad you feel that the total pancreatectomy with islet cell transplant worked for you! I am 48 years old and was diagnosed with Sphincter of Oddi Dysfunction in the late 90's. This caused me to have 3 AP attacks, which then turned into CP. I had 9 ERCP's with sphincterotomies on the main bile duct/pancreatic duct. Dilated and high pressure in pancreas with abnormal branches. My quality of life is not good at all. Pain, no energy, no plans, no friends, eating is painful, traveling and getting out of the house is all but over. I had a major surgery 6 months ago called a roux en y hepaticojejostomy to help my sphincter of oddi pain. It did help, but the CP is something I am told will only get worse with time. How much worse can it get? I've gone from weighing 135 to 97 lbs. I am not absorbing the food I eat and that does not help my energy level either. What caused the doctor to decide to go to such a drastic surgery for you? Was your pancreas not functioning at all, or did it have cysts? With SOD, the bile backs up into the pancreas and digests the organ itself. I don't know how bad you let the pancreas get before you decide to have a total pancreatectomy with islet cell transplant. I would love to chat with you some time if you have the time. My email is aprilreddcoupon@gmail.com. Please don't feel pressured to write if you are having a painful day. I totally agree about living a life without pain killers. I know that some people need it, but I do not want to become addicted to them. Thanks for your story and your blog.

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  2. wow girl....i'm so glad you are at the point of recovery you are at....had no idea..., you are a very good writer by the way...take care .....chuck

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  3. my goodness mary, what a story you have to tell.....thanks for sending your new blog piece to me.....i used to be on the pancreatits pain sharing network several years ago until it was disbanded by the owner of the site and made a lot of contacts through that forum and learned a lot.....i hope this one draws a following from those affected one way or another by pancreas related disease and many can benefit by the shared knowledge and experiences.....i look forward to following you and the rest of those who post here....steve

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  4. Mary -- I have been "living" with this disease since 1996 when I nearly died from a massive necrotizing AP attack that put in the ICU for about 3 weeks. I developed a pseudocyst and so one year later I submitted to the roux-en-Y Puestow procedure, which I really did not want but I was promised it would relieve my pain. It did not, and I wish I followed up on a consult I had at Cleveland Clinic where they were doing the surgery endoscopically. Pain is my major problem and it seems like people needing pain medication are treated as despised, distrusted minorities, esp. if you don't have cancer. I have a medical background and when I was initially hospitalized and told what I had, I told them not to treat me (except for the unbearable pain) and let me die since I knew how the medical system treated patients with CP, esp.those needing pain meds. Unfortunately, they did not honor my request and so I have suffered with this for years, just getting enough pain meds to be able to work part time and my family suffered as I have needed their help over the years. We ALL would have been better off if they had honored my request. I have little to no quality of life, and it appears I may lose my home soon because of the financial burden of this horrible disease. I am so depressed about not being able to take care of myself without help from family and over the prospect of having to move back in with my parents that I really feel like everyone would be better off if I corrected the error my family and doctors made in not honoring my requests years ago. I feel I can't do that, though, as I have cats that I love very much and who would miss me. See, that is how low my quality of life is: my cats are the most important thing in my life!:(

    I don't recall being offered a TP/ICT back then and only recall reading about them sometime after 2005 or so. My life might be very different now had I been able to take advantage of such a procedure.

    I had a very good life before I got sick, and even since getting sick, I have had many fun times. The idea that I'm burdening my family financially is revolting and I am looking into how I could make arrangements for the cats. I think things would also be quite different if our society was more enlightened about pain management. Fortunately, you did not need narcotics and had a surgical solution. For those of us without that option, there should be some compassion from the medical profession and those who regulate it. I think the way we treat pain patients these days is quite similar to how we treated African Americans in antebellum times. It's very, very sad and I am so happy for you that have been able to avoid a life like mine, one hardly worth living.

    Thanks for posting your story and I hope the surgery you had prevents anybody in the future from living a horrible life like mine. I would like to communicate with you more but must go now because thinking about this is making me get very upset an cry.

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  5. Thank you Mary for writing as,well as all who have posted! Could not agree more about how those of us using pain meds to get by are treated. Yes there are drug addicts out there but otherwise who in their right mind would want to subject themselves to pain meds and the problems they cause as well as feeling like you must have the plague asking for them.

    I have not officially been dx'd with CP but been dealing with SOD for years, and quite positive have CO, 11 ERCP's, transduodenal sphincteroplasty in 2008, with C Difficile as complication so now have incisional hernia from that surgery which is yet another abdominal issue. Trying to fend off as long as possible Whipple as well as have been told inevitable total pancreatomy.... Was scheduled in April for Transduonenal Ampullectomy as questioning that ampulla spasming rather than duct could be issue. At last minute freaked & cxl'd. Sound familiar? Had very little help at home as well as was going to repair hernia. Five kids with either special needs & or their own major medical problems....So saw no way could do recovery. Came up with experiment with surgeon and is helping. He, surgeon , has just began using Vitrase, at new duct opening during Whipple to reduce scar tissue per recommendation of orthopedic surgeon. Knowing my history of being scar tissue queen thought worth trying during ERCP injecting Vitrase into ampulla, muscle around pancreatic duct, to reduce scar tissue under premise scar tissue is strangling nerves around duct causing at least some of the excruciating pain. It is helping! The "inflating basketball with rod going straight through me"(perfect description) is so much better! May be only a stop gap. Have done it 2x, better each time, due for another, but there are a handful, literally, of doctors who are listening and trying! Others are nightmares. I am rambling, long night of no sleep. Due for procedure but my husband just lost his job so have to suck it up and hold out. Hopefully will not be long.

    Anyway thank you Mary, you are helping at least one person. Thank you to everyone else. It is helpful, especially in the wee hours, in pain, with no friends nor family left to discuss with, to know others are out there! especially to the person who posted just before me. The hopelessness has been getting to me and why we have to live this way and fight SO hard at every ER visit, every appt, family, friends, family suffering financially I too trying to work parttime and also trying to take enough pain meds to do so but that is literally all I do, bedridden most rest of time as also have Addison's & psoriatic arthritis. It is all too much. We need to know there are others and others that make it to the other side, the side of the actually living. Thank you.

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  6. Wow! Great forum! I had the exact same surgery on Nov. 6th 2012...I was recovering while you were typing :) I am 4 months post op and doing well. There are many 'speed bumps' but compared to AP and CP I am great! The hardest part is exactly as mentioned above, withdrawl from pain meds! Since my journey bagan, 3 years ago, I have wanted to find a way to educate ER doc's on 'chronic' health conditions, because they are idiots when it comes to that type of illness! I have been the 'drug abuser' in their eyes way to many times! It is so sad our society operates like that! Bless you all, and you will all be in my prayers.

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  7. I had an attack of pancreatitis in June, 2007. This was followed by another in March, 2010. Both resulted in 3 day hospital stays. I was sent to UCSF to have my pancreas studied but declined the ERCP and EUS at that time (October 2010) because of the potential dangers. I did commit to return, however, if I had another incident or condition involving my pancreas.

    I was then diagnosed with diabetes in December, 2011. I was determined to lose weight and get off the medication by December, 2012. I followed through on my commitment to have my pancreas studied in San Francisco. A tumor was found to be blocking the main duct of my pancreas. I had 2/3rds of the pancreas and the spleen removed in May, 2012. I have been insulin dependent but have been working with a Take Shape for Life coach, using Medifast meal replacements and joined curves and was going to approach my endocrinologist about using the pills instead of insulin as I've lost 18 pounds and have control of my blood sugar levels. Unfortunately as study of my pancreas over spring break has shown that the there are lesions on the remaining pancreas and it either comes out or we check it every 6 months until the biopsy shows pancreatic cancer. I've been researching "life without a pancreas" to see what I'm facing.

    Your story has been encouraging to me. I'm a very positive person and believe as you do about getting yourself out of bed immediately. Last year I was doing my breathing exercises every hour throughout the first night. As a result of my attitude and strength, I left the hospital on day 5 of my 7-10 day stay. I even endured the 3 hour car ride to get home. I was back at work 2 months later.

    I am worried about my ability to return to work this time. I would like information about diet and enzyme replacements that you've found to be effective. I'd also like any tips you have regarding how to avoid vomiting and diarrhea. I hate both!!! I'll check the site to see if anything is posted to answer my questions.

    Nervous but ready to face this.

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  8. My husband had a total panc removal on June 14, 2013 - an auto immune disorder had turned his to stone and after several attempts to help him (clean pancreatic stones from the ducts, etc.) they decided the Whipple Procedure was the only thing that would save him. He was below 115# at 5'11" - could not absorb nutrients or digest his foods, even with a large dose of Creon with every meal and snack. Besides the severe pain, he was dying of malnutrition. So June 14th he went it for the Whipple, in the process they nicked his spleen and that too was removed along with 1/3 of his small bowel and 1/3 of his stomach. He came home 2 weeks later with a drainage tube in his stomach and a feeding tube in his small bowel. They had no idea if he would ever be able to eat regular foods again, but just a couple weeks after the surgery he started on puddings and ice cream, jello, etc. He quickly graduated to hamburgers and pizza! lol
    He had the feeding tube in for 3 months, as he was extremely malnourished and needed to gain a lot of weight. His normal weight was always around 185-190 - so he was very far from the desired healthy weight. He was on an insulin pump prior to the Whipple because his pancreas was doing nothing .... so he continued on the insulin pump, but could never get his blood sugars controlled. He still had difficulty digesting and absorbing food or drinks, so he battled the most brittle diabetes his Endocrinologist had ever seen. Waking in the 20's, only to rise into the 500+ within an hour or so, then back to the 60's and up in the 700's. He was back to work 3 months post Whipple, and although was very weak, he did quite well. He went on the pancreas transplant list in November of 2012 and on March 1 he was called for a transplant. Although that pancreas ended up being damaged, he was called 3 more times with the 4th pancreas being the magic panc. On March 11th of this year, he received a partial small bowel and pancreas transplant. He left the hospital on March March 16th and was back to work the end of April! He is unfortunately battling "graph verses host disease" and is in a very bad place, but after all he has been through the past 3 years, we are hoping they get this under control. It is very rare for an organ transplant patient to contract graph verses host, but nothing about his illness and recovery has been 'normal'. They are fighting to keep him alive, to keep his pancreas ... if they can't, then they will have to remove it to save his life. I know exactly what you mean Mary about finances. We live in Ohio, but none of the hospitals in Ohio would even touch him. His case was too overwhelming and no one felt they could take him on. He was then sent to Indianapolis Hospitals (the premier pancreatic specialists of North America) to a transplant surgeon named Dr. Fridell. He is fantastic is the transplant arena. We have to travel 200 miles one way to get to his treatments, costing around $300 for a one night, two day trip. We have no retirement left, we have no savings, and we now haven't the money for our house payment. These major illnesses definitely create an extreme burden ... and if anyone knows of any help out there, please share. I will all of you much luck in your health and surgeries - I wish you all peace and a bright future ahead. Any questions, please feel free to contact me. sharman1313@yahoo.com

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  9. Oops, his Whipple was June 14, 2012 - the transplant March 11, 2013.
    He was only on pain meds for 3 months following the Whipple, and only 8 weeks total following the transplant.
    Any of you who haven't gotten the care you need - trust me when I say you DO NOT have to live your lives in pain!! The Whipple is no piece of cake, but after suffering from both chronic and acute pancreatitis, the Whipple was the best thing that ever happened to my husband. Go see a gastroenterologist - ask about the Whipple. DO NOT ALLOW THEM TO PUSH YOUR PAIN UNDER THE CARPET!!! Love and peace to you all.
    sharman1313@yahoo.com

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  10. When I was diagnosed with ap at 19yrs old I was so clueless why this had happened I was rushed in to the hospital 3 weeks after giving birth to my second child in jan 2008I really thought I was going to die and if you want the truth I nearly did 3times i got admitted to hospital and early hours in the morning was rushed to iccu fighting for my life the doctors had explained to me that I had a thing called pancreatitis which had been caused by gallstones off my pregnancy with my daughter I got seriously Ill quicker than anyone could imagine and all I did was cry for my new baby and my 1yr old son I had to be fitted with an ng tube in my nose and was on 4 different iv antibiotics and had to have 4 blood transfusions cause of the state of my pancreas I now had full blown septicemia and was deteriorating fast I had a drain inserted in to my pancreas to drain fluid as soon as the tube was inserted in the operating room over 3 litres of fluid had drained pretty quick from my pancreas and the smell of it was so bad I was that sick I couldn't keep my eyes open I couldn't speak I couldn't move a muscle at all I lay there unable to move at all things got worse the doctor had decided to remove the drain but he removed it to soon and within 3 hrs I was back in iccu on all the machines and that was the 3rd time my husband had been called early hours in the morning to come in and say his goodbyes to me but somehow I kept fighting finally It was extremely critical my surgeon came in on the Tuesday and said you will be in theatre on Thursday as I kissed my babies for why I thought would be the final time the night before It broke my heart imagining my toddler had had his second birthday in iccu with me and I'd missed my babies first smile too two memories I will never ever get back so surgery day I was taken down to theatre for my 12 and a half hour surgery to try and save my life I was told there was an 85% chance I would die with the surgery but without it I would be dead in 2-3 days the surgeon had removed 3quarters of my pancreas successfully and the 8 cysts attached to it they couldn't see the gallbladder to remove it so they left it and closed me up I have a full incision scar across my stomach which arches up on one side waking up I couldn't believe my eyes I was in recovery room getting prepared to stay in iccu I was alive I had 4 drains and a central line in my kneck and a pca and catheter and insulin pump and a machine to pump heated fluids in to my remaining pancreas and then drains out I was shocked to be alive surgeons were shocked after spending 2 and a half months in hospital in total I was allowed home finally to bond with my baby and to hold my son it's been 5 years and I have cp because of the extent of the first time I have regular flare ups getting more and more regular equalling more and more stays in hospital while they treat me like crap and look at me like crap I live in pain 24/7 I have an absolutely amazing surgeon called mr Richard charnley at the freemans hospital Newcastle upon Tyne in England and he's still continuing to try to help me and help my family I'm 24 and all I want to be is the mom I want to be and I would l love to raise awareness that ap & cp isn't just alcohol related but it can happen at anytime and even when pregnant I'm so grateful to be alive and with my husband and children and I'm currently waiting for more tests to hopefully find out why my attacks are getting worse and more regular and longer in duration all I can do is sit and wait and hope and pray

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  11. i'm having a tp and ait at uofm on july 22nd this year and am very much looking forward to it. i am a md and remember rotating through chronic pain service and thinking these are the worst of the worst, the last place on earth i would ever want to be and certainly never imagined myself in that spot. well low and behold here i am. and even as a doctor i go to the er and am treated as a drug seeker especially here in the southeast where i think the medicine is poor at best and chronic panc and pain understood the least. my first symptoms were in 2006, i had 6 ercps, many mrcps, us,etc, etc..on the 6th ercp the doc faced an obstruction he couldn't get a wire past and the next thing i know i was talking to a surgeon. that person told me this disease would end my career and possibly my life. now this is to a person who mountain bikes 100 miles a week and worked out since i was 16 years old, always about 10% body fat. i travelled around the world twice for 6 and 8 month trips and took many other long trips to every corner of the globe. i had a great career, chief of my department and well loved by my patients. i had a puestow in may 2009 and had no relief. it was difficult and hard on my family. i stopped working, lost my house, family, couldn't work out at all and had to rely on narcotics for pain relief. i tried to travel but to no avail. now my disease has deteriorated more to where i can eat little and i have severe pain when i do. i wallow my day away everyday doing almost nothing. of course depression is a huge problem but hardly even recognizable anymore. i have lost 30 pounds from my original weight of 170. and can not slow the weight loss at this point. so yeah i am excited to go back to the operating room for this horrendous surgery that will leave me with a different set of problems but a set of problems that will hopefully be more manageable than the ones i have now. i'm scared no doubt but i'm motivated. i wanna ride by mtn bike again and go to the track with my car and motorcycle. i wanna travel with my twin bro and son again. who knows maybe even work again. i wanna not take narcotics every damned day. i wanna sit down to christmas dinner with my family and be able to eat a good meal and laugh again. yeah i am scared shitless but you couldn't get me in that o.r. fast enough!

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  12. Wow, I'm so sorry for all of your pain and so thankful for my health. May peace be with you in your struggles and you will all be in my prayers. Reading what you're dealing with makes me feel guilty of my ignorance but thankful for it at the same time.
    Take care and you have all of my compassion and prayers!!!

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  13. Hi Mary,
    Great to hear you're doing well. I had the Whipple also, the full Colangiosestectomy. You are right the pain before was just awful. my problem was getting the doctors to pay attention. They kept telling me I had nothing wrong. In the end, I just lost it and said "There is something wrong, find out what it is!!". I was so mad. The pain had gone on for almost a year. Sure enough they discovered a small tumor just inside the head of my pancreas.Sometimes we have to be our own advocate!! Like you I take the enzymes, and a couple of others to keep the acid down in the stomach. You just have to bite the bullet and accept it, and will continue to fight on. This is my second time with cancer... won the first and plan to win this one too!!
    All the best..

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  14. Thank you for this blog. I have been dealing with this for at least 3 years and probably more and just didn't realize it. It is time for the Whipple or just take the thing out.

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  15. Im having the pancrease completely removed in 3 weeks Really scared not knowing what lies ahead for me or how long i have to live . I have cancer which has not spread any where else so far.Does anyone here know anything about my life expectancy after surgery?Would really appreciate some information.

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  16. I have been dealing with pancreatitis for over 4 yrs. Thank You Mary for all your strength, wisdom and courage during this time. Your words are more encouragement for all of us!!! My story began in 08 as schintor of oddi. 5 months later, the pain came back and was referred to IU. After an ERCP, and another oddi surgery, I basically started a 4 yr attack! Every month in Hosp, nerve blocks, 12 days in OSU for malnutrition and lots of pain meds was told this was as good as it could get. No one wanted to know what really was going on. Simply told it was pancrease division which NEVER bothered me for 38 yrs then "all of a sudden?" That was not good enough for me but was always Dr. Blocked. I finally went to Cleveland Clinic. After a yr of beating down doors, and taking 60mg morphine AND 6-8 mg diludid daily to move; the Dr. At CC asked if anyone knew what was really going on. After surgery, I was told I had no big duct, and little duct was size of tip of a sharpened pencil. That duct was stinted and another 6 day recovery with promise of at least knowing what was wrong. It's been over a yr since surgery. I have been called the addict shuned on by the Docs. Thought of as an alcoholic and felt so dependent on my family during all my Hosp stays. We almost lost our house, cars, all of it but somehow by the grace of God we have prevailed. I have a 15 and 8 yr old that I feel I have lost 4 yrs with but they are just glad I wasn't lost. Even though like most of you, almost wish I had during the worst of it.

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  17. Each day that goes by, I count as a blessing knowing others are dealing with this and I am NOT ALONE, like I have felt for over 5 yrs till I found this blog. And each day brings more awareness to our suffering, lack of quality living, and restrictions but also to a breakthrough from the medical community in stories of success like Mary's. I Pray daily for myself, and anyone who has been through a taste of what we have. Even though most of my encounters with Dr has been hard, I still thank the good ones for at least trying to understand what I was going through and trying to help. I also had an experimental vibration something installed in my spine, but can't remember what it was called but it did not work. I am slowly sliding back down into growing pain and it gives me GREAT HOPE of hearing your success!

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  18. Thanks for sharing your stories. Life can be hard sometimes for some people. Healthy people have little idea of the mental and physical hardships that cancer survivors go through. Good luck to everyone and a Merry Christmas to all!

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  19. Hi Mary. My Dr is Sayed Ahmad too! I have been living with CP since 2010 when my pancreas was nicked from a previous surgeon in Louisville.
    Dr Ahmad and his team want me to have the TP/AIT, soon. I am an emotional mess right now. I had the Frey (by Dr. Ahmad) in Feb 2012 but it has proven ineffective now. The attacks/pain/sickness are daily/weekly/monthly. Can we chat or point me in the direction of the support group Ahmad briefly mentioned to me last month (I didn't catch the name...and was in a bit of shock)

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  20. after tpait how many years we r free from diabetes

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