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pancreatitis after whipple surgery
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pancreatitis after whipple surgery

my husband had a whipple surgery 3 years ago due to many severe pancreatis (pancreatitis) attacks.   he also has crohn's disease (for over 40 years).    During the whipple surgery they found a benign tumor in his duodeum (this area was heavily scarred from crohn's disease).   the tumor was blocking his pancreas and causing the attacks.   now that he has had this life saving procedure, he continues to suffer regular pancreatis (pancreatitis) attacks.    his gastro just tells him that he is an 'unlucky' man.    there must be something that can be done to help relieve or lesson these attacks.   note - he does not drink.    please help!

sarah
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82861_tn?1333457511
I am so sorry to hear about your husband.  I know from experience how awful pancreatitis can be, and hope he at least has a decent pain management doc.  I can't imagine going through a huge surgery like a Whipple only to have it fail.  Do the docs give you any idea at all as to why he is still having attacks?  Another blockage?  Scar tissue?  Anything?  It may be true that there really isn't anything left to do.  People with chronic pancreatitis sometimes suffer for years and years until the pancreas basically burns itself out.  Of course, by then there's all kinds of digestive problems, but at least no more pain.  I know of an excellent gastro doc in the Houston Medical Center (Baylor College of Medicine) who has done some wonderful things with pancreas patients.  PM me if you would like his name.
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Avatar_n_tn
thank you for your response.   I would be interested in the gastro's name.    
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Avatar_f_tn
I am a 44 year old female and 4 years ago I had a whipple and since then I suffer from pancreatic attacks one so severe they said next time I might have to have another "mini whipple"  My sugeon claims that I too was an unfortunate person and that the pancreatic attacks are not caused by what I eat.  It is just the way my duct is (not sure the name) but it is narrow and thus causing the pancreatitis.  I to tried to narrow the cause down by either drinking alcohol, which I do not do. And eating higly fatty meals.  None of which caused any pain. But yet I suffer from acute pancreatic attacks at least 3 times a year with a 4 days to 2 weeks stay in the hospital and enzyme levels from 800 -1500 to this day I have no answers,

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Avatar_m_tn
I too had a Whipple in May of 2008... And I suffer from attacks, not sure why I have them but the docs think its nerve damage...
Here is a link to a video my wife took when I was having one so I could show the doctors because they were telling me they have never heard of it...

http://www.youtube.com/watch?v=Y4SjSHQe1rU

The attacks started out only two a night but soon got to seven or more... it was unbearable I even asked my wife to shot me one night... I met a woman that had a Whipple and she to suffer from these attacks and told me to have my doctor start me on Fentanyl Patches at 50 MCG/HR every 48 hours... and so far so good. No attacks. They also put me on Cymbalta 60mg to help with nerve damage.. I'm going to stay on the Fentanyl tell the end of the year then they will take me off it and see if the Cymbalta helped...



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Avatar_n_tn
My husband is 38 yrs old and had a whipple surgery 2 yrs ago for suspected Pancreatic Cancer. Thank God it ended up being Auto Immune Pancreatitis and not cancer. He also was diagnosed with Chrone's 10 yrs earlier. He has never felt the same since the surgery, he is always having "fluttering" feelings and "sqeezing" feelings around where his bile ducts are but recently he is having a pain/feeling that is new on the right side of his abdomen under his ribcage.When I looked up were this feeling was online it looks to be the tail of his pancreas. I am so nervous that this is all happening again.. I didn't realize it was possible to get pancreatitis AGAIN post Whipple....He has been through so much I don't think we can handle this again
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Avatar_f_tn
Hi. I am a 44 yr old female who had the Whippke surgery done about 7 wks ago. I was diagnosed w/ pancreatitis in 1997. Up until then, my lifestyle included a lot of drinking. When I was told in '97 that if I continued to drink I wouldodor, I stopped. Well stopped for the most part - from drinking 5 - 7 nights a week to 5 - 7 times a year. For many years I did very well. I was healthy. Then around 2001 the attacks came back. They found a non-cancerous tumor in the head of my pancreas. It was drained and again I had some good, healthy years.
Fast forward to 2007, I began having pain from eating. They discovered the tumor had returned. Over the years I had about 1/2 dozen hosptal stays. Many doctors accusing me of only wanting narcotics. Despite the tumor and the rise of my enzyme levels with the attacks. All this took a heavy toll on my marraige & children.
In mid 2010, my husband found a specialist in Boston. He was the first foc to tell me I'd need the Whipple surgery.
This year had been bad with my attacks. After having the tumor drained in Dec. 2010, it was back & twice the size in April.
The surgery went well. I was home in 8 days. I was told I could eat a regular diet. I was feeling much better by week 3 & it has been downhill ever since. I was hospitalized again at week 5 due to dehydration, my white blood count was off & panreatic inflammation. I haven't felt right since.
I am tired all the time. I have more pancreatic & digestive pain than before the surgery and emotionally I am shot.
The GI docs (not the specialist who was too far for me to go for the surgery) tell me I still have pancreatitis, but it should be much better with little to no regular pain. Othe doctors in the hospital, surgical docs, tell me my pancreatitis is 100% cured.
I  am a stay-at-home mom with 2 kids ages 12 & 11. My husband works very hard and was amazing for the first 6 weeks. Now he's mad that I'm useless & I'm feeling SO guilty for not being well. My house & life are falling apart & I feel extremely helpless.
I apologize for being so long-winded & detailed but I wanted to give as much info as possible. What I would like to ask is how is your husband feeling?  How was his recovery from the surgery?  
Anything you can tell me about your experience would be helpful & greatly appreciated. Thanks so much for listening.
Laurie
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Avatar_f_tn
I'm sorry I didn't proofread my comment.
Just to clarify, in '07 I began being hosptalized 1/2 doz times a year.
Also I was told to stop drinking or I'd die.
I had the operation July 28, 2011
thanks again
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Avatar_f_tn
Hi Laurie,   I am 44 and I had the whipple on 11/30/10 due to a tumor in the head of my pancreas that was benign.  After my 6 week check-up with my surgeon I started with the worst pain ever, went to surgeons office next day my lypase was 720 and ct scan showed my duct was blocked they sent me home told me to eat light and take enzymes and if I could not take the pain to come in to the hospital to go on morphine.  Just to add I have a very high tolerance for pain I have had 2 back surgeries I have disc degeneration disease and spinal stenosis this started when I was 25 and I had first surgery at 30 and second at 32 and live on pain pills for that.  But this pain is worse than any back pain this is soo diferant.  So I ended up having pancreatitis for 10 weeks before they operated again and removed another piece of my pancreas and opened up my duct.  By May the pain started to come back (had the surgery on 3/15/11) but my blood and ct scans where all normal.  Now I have pain everyday and nausseau and my surgeon thinks it could be minimal change chronic pancreatis (pancreatitis) which he said it could lead to having to have the rest of my pancreas removed.  I have an appointment with a pancreas specialist this Thurseday.  They are going to have to do another biopsy, not looking foward to that.  My husband and I just moved to Florida 2 months ago from New York for a fresh start.  I can't do much I am always tired and in pain, I to feel so guilty for being sick, first it was my back and now this and because of my back and fertility issues I could not have any children and That was the Only thing I Ever wanted to Be was a MOM.  I will let you know what the specialist in Miami says, please keep me posted on your condition.  I wish you only the best and maybe I will get some info on Thurseday that may help you to.  Hang in there and Know that you are NOT ALONE!
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Avatar_m_tn
i have 0 pancreias left i take creon to digest food and insulin for my sugars,it started in 2004 with a complete blockage of my bowel as my pancrias had a cyst on it and was inflamed.2009 i was admitted for acute pancrias and in 2011 the last piece died,i have diabbets type 1 but no pancraita pain,i have manged to work for about 5and a half of the last 8 years and now im pain free.just allways low on blood suagrs and tired
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Avatar_f_tn
I have some questions for you..  I had a whipple done Jan 25, 2013 due to a cyst on the head of my pancreas, pancreas divisium and spichtner of oddie syndrome. I have had pancreatitis three times since and currently have a feeding tube to give my pancreas a break.  The dr thinks there is something wrong with the tail of my pancreas. He is wanting to remove all of my pancreas.  My question is, do you have an insulin pump? How do your sugars run?  I am only 32 and also had my gall bladder and appendix removed. I am on creon daily and on pain medications to help with the pain...  I want all of the information I can get on this before I agree to have it removed.  Anything you can tell me, would be appreciated it!  Thanks
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