Pancreatectomy





Definition

A pancreatectomy is the surgical removal of the pancreas. A pancreatectomy may be total, in which case the entire organ is removed, usually along with the spleen, gallbladder, common bile duct, and portions of the small intestine and stomach. A pancreatectomy may also be distal, meaning that only the body and tail of the pancreas are removed, leaving the head of the organ attached. When the duodenum is removed along with all or part of the pancreas, the procedure is called a pancreaticoduodenectomy, which surgeons sometimes refer to as "Whipple's procedure." Pancreaticoduodenectomies are increasingly used to treat a variety of malignant and benign diseases of the pancreas. This procedure often involves removal of the regional lymph nodes as well.


Purpose

A pancreatectomy is the most effective treatment for cancer of the pancreas, an abdominal organ that secretes digestive enzymes, insulin, and other hormones. The thickest part of the pancreas near the duodenum (a part of the small intestine) is called the head, the middle part is called the body, and the thinnest part adjacent to the spleen is called the tail.

While surgical removal of tumors in the pancreas is the preferred treatment, it is only possible in the 10–15% of patients who are diagnosed early enough for a potential cure. Patients who are considered suitable for surgery usually have small tumors in the head of the pancreas (close to the duodenum, or first part of the small intestine), have jaundice as their initial symptom, and have no evidence of metastatic disease (spread of cancer to other sites). The stage of the cancer will determine whether the pancreatectomy to be performed should be total or distal.

A partial pancreatectomy may be indicated when the pancreas has been severely injured by trauma, especially injury to the body and tail of the pancreas. While such surgery removes normal pancreatic tissue as well, the long-term consequences of this surgery are minimal, with virtually no effects on the production of insulin, digestive enzymes, and other hormones.

Chronic pancreatitis is another condition for which a pancreatectomy is occasionally performed. Chronic pancreatitis—or continuing inflammation of the pancreas that results in permanent damage to this organ—can develop from long-standing, recurring episodes of acute (periodic) pancreatitis. This painful condition usually results from alcohol abuse or the presence of gallstones. In most patients with the alcohol-induced disease, the pancreas is widely involved, therefore, surgical correction is almost impossible.


Description

A pancreatectomy can be performed through an open surgery technique, in which case one large incision is made, or it can be performed laparoscopically, in which case the surgeon makes four small incisions to insert tube-like surgical instruments . The abdomen is filled with gas, usually carbon dioxide, to help the surgeon view the abdominal cavity. A camera is inserted through one of the tubes and displays images on a monitor in the operating room . Other instruments are placed through the additional tubes. The laparoscopic approach allows the surgeon to work inside the patient's abdomen without making a large incision.

If the pancreatectomy is partial, the surgeon clamps and cuts the blood vessels, and the pancreas is stapled and divided for removal. If the disease affects the splenic artery or vein, the spleen is also removed.

If the pancreatectomy is total, the surgeon removes the entire pancreas and attached organs. He or she starts by dividing and detaching the end of the stomach. This part of the stomach leads to the small intestine, where the pancreas and bile duct both attach. In the next step, he removes the pancreas along with the connected section of the small intestine. The common bile duct and the gallbladder are also removed. To reconnect the intestinal tract, the stomach and the bile duct are then connected to the small intestine.

During a pancreatectomy procedure, several tubes are also inserted for postoperative care . To prevent tissue fluid from accumulating in the operated site, a temporary drain leading out of the body is inserted, as well as a gastrostomy or g-tube leading out of the stomach in order to help prevent nausea and vomiting. A jejunostomy or j-tube may also be inserted into the small intestine as a pathway for supplementary feeding.


Diagnosis/Preparation

Patients with symptoms of a pancreatic disorder undergo a number of tests before surgery is even considered. These can include ultrasonography, x ray examinations, computed tomography scans (CT scan), and endoscopic retrograde cholangiopancreatography (ERCP), a specialized imaging technique to visualize the ducts that carry bile from the liver to the gallbladder. Tests may also include angiography , another imaging technique used to visualize the arteries feeding the pancreas, and needle aspiration cytology, in which cells are drawn from areas suspected to contain cancer. Such tests are required to establish a correct diagnosis for the pancreatic disorder and in the planning the surgery.

Since many patients with pancreatic cancer are undernourished, appropriate nutritional support, sometimes by tube feedings, may be required prior to surgery.

Some patients with pancreatic cancer deemed suitable for a pancreatectomy will also undergo chemotherapy and/or radiation therapy. This treatment is aimed at shrinking the tumor, which will improve the chances for successful surgical removal. Sometimes, patients who are not initially considered surgical candidates may respond so well to chemoradiation that surgical treatment becomes possible. Radiation therapy may also be applied during the surgery (intraoperatively) to improve the patient's chances of survival, but this treatment is not yet in routine use. Some studies have shown that intraoperative radiation therapy extends survival by several months.

Patients undergoing distal pancreatectomy that involves removal of the spleen may receive preoperative medication to decrease the risk of infection.


Aftercare

Pancreatectomy is major surgery. Therefore, extended hospitalization is usually required with an average hospital stay of two to three weeks.

Some pancreatic cancer patients may also receive combined chemotherapy and radiation therapy after surgery. This additional treatment has been clearly shown to enhance survival rates.

After surgery, patients experience pain in the abdomen and are prescribed pain medication. Follow-up exams are required to monitor the patient's recovery and remove implanted tubes.

A total pancreatectomy leads to a condition called pancreatic insufficiency, because food can no longer be normally processed with the enzymes normally produced by the pancreas. Insulin secretion is likewise no longer possible. These conditions are treated with pancreatic enzyme replacement therapy, which supplies digestive enzymes; and with insulin injections. In some case, distal pancreatectomies may also lead to pancreatic insufficiency, depending on the patient's general health condition before surgery and on the extent of pancreatic tissue removal.

Risks

There is a fairly high risk of complications associated with any pancreatectomy procedure. A recent Johns Hopkins study documented complications in 41% of cases. The most devastating complication is postoperative bleeding, which increases the mortality risk to 20–50%. In cases of postoperative bleeding, the patient may be returned to surgery to find the source of hemorrhage, or may undergo other procedures to stop the bleeding.

One of the most common complications from a pancreaticoduodenectomy is delayed gastric emptying, a condition in which food and liquids are slow to leave the stomach. This complication occurred in 19% of patients in the Johns Hopkins study. To manage this problem, many surgeons insert feeding tubes at the original operation site, through which nutrients can be fed directly into the patient's intestines. This procedure, called enteral nutrition, maintains the patient's nutrition if the stomach is slow to recover normal function. Certain medications, called promotility agents, can help move the nutritional contents through the gastrointestinal tract.

The other most common complication is pancreatic anastomotic leak. This is a leak in the connection that the surgeon makes between the remainder of the pancreas and the other structures in the abdomen. Most surgeons handle the potential for this problem by checking the connection during surgery.


Normal results

After a total pancreatectomy, the body loses the ability to secrete insulin, enzymes, and other substances; therefore, the patient has to take supplements for the rest of his/her life.

Patients usually resume normal activities within a month. They are asked to avoid heavy lifting for six to eight weeks following surgery and not to drive as long as they take narcotic medication.

When a pancreatectomy is performed for chronic pancreatitis, the majority of patients obtain some relief from pain. Some studies report that one-half to three-quarters of patients become free of pain.


Morbidity and mortality rates

The mortality rate for pancreatectomy has decreased in recent years to 5–10%, depending on the extent of the surgery and the experience of the surgeon. A study of 650 patients at Johns Hopkins Medical Institution, Baltimore, found that only nine patients, or 1.4%, died from complications related to surgery.

Unfortunately, pancreatic cancer is the most lethal form of gastrointestinal malignancy. However, for a highly selective group of patients, a pancreatectomy offers a chance for cure, especially when performed by experienced surgeons. The overall five-year survival rate for patients who undergo pancreatectomy for pancreatic cancer is about 10%; patients who undergo pancreaticoduodenectomy have a 4–5% survival at five years. The risk for tumor recurrence is thought to be unaffected by whether the patient undergoes a total pancreatectomy or a pancreaticoduodenectomy, but is increased when the tumor is larger than 1.2 in (3 cm) and the cancer has spread to the lymph nodes or surrounding tissue.


Alternatives

Depending on the medical condition, a pancreas transplantation may be considered as an alternative for some patients.

See also Pancreas transplantation .

Resources

BOOKS

Bastidas, J. Augusto, and John E. Niederhuber. "The Pancreas." In Fundamentals of Surgery. Edited by John E. Niederhuber. Stamford: Appleton & Lange, 1998.

Mayer, Robert J. "Pancreatic Cancer." In Harrison's Principles of Internal Medicine. Edited by Anthony S. Fauci, et al. New York: McGraw-Hill, 1997.


PERIODICALS

Cretolle, C., C. N. Fekete, D. Jan, et al. "Partial elective pancreatectomy is curative in focal form of permanent hyperinsulinemic hypoglycaemia in infancy: A report of 45 cases from 1983 to 2000." Journal of Pediatric Surgery 37 (February 2002): 155–158.

Lillemoe, K. D., S. Kaushal, J. L. Cameron, et al. "Distal pancreatectomy: indications and outcomes in 235 patients." Annals of Surgery 229 (May 1999): 698–700.

McAndrew, H. F., V. Smith, and L. Spitz. "Surgical complications of pancreatectomy for persistent hyperinsulinaemic hypoglycaemia of infancy." Journal of Pediatric Surgery 38 (January 2003): 13–16.

Patterson, E. J., M. Gagner, B. Salky, et al. "Laparoscopic pancreatic resection: single-institution experience of 19 patients." Journal of the American College of Surgeons 193 (September 2001): 281–287.


ORGANIZATIONS

American College of Gastroenterology. 4900 B South 31st St., Arlington, VA 22206. (703) 820-7400. http://www.acg.gi.org .

American Gastroenterological Association (AGA). 4930 Del Ray Avenue, Bethesda, MD 20814. (301) 654-2055. http://www.gastro.org .

National Cancer Institute (NCI). NCI Public Inquiries Office, Suite 3036A, 6116 Executive Boulevard, MSC8322 Bethesda, MD 20892-8322. (800) 422-6237. http://www.cancer.gov .


OTHER

NIH CancerNet: Pancreatic Cancer Homepage. [cited July 1, 2003]. http://www.cancer.gov/cancerinfo/types/pancreatic .


Caroline A. Helwick Monique Laberge, Ph.D.

WHO PERFORMS THE PROCEDURE AND WHERE IS IT PERFORMED?



A pancreatectomy is performed by a surgeon trained in gastroenterology, the branch of medicine that deals with the diseases of the digestive tract. An anesthesiologist is responsible for administering anesthesia and the operation is performed in a hospital setting, with an oncologist on the treatment team if pancreatic cancer motivated the procedure.

QUESTIONS TO ASK THE DOCTOR



  • What do I need to do before surgery?
  • What type of anesthesia will be used?
  • How long will it take to recover from the surgery?
  • When can I expect to return to work and/or resume normal activities?
  • What are the risks associated with a pancreatectomy?
  • How many pancreatectomies do you perform in a year?
  • Will there be a scar?


User Contributions:

Furqan Khan
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Mar 4, 2006 @ 1:13 pm
Pancreatectomy is also performed in a condition of Hyperinsulinemia. I wondered, if i could find information on that
Betty
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Mar 6, 2008 @ 1:13 pm
Hi Betty, Here is an interesting article on paancreatectomies... I alsos printed it out in case anyone wants it.

Have a good day. Jeanne
barbara cary
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Oct 7, 2009 @ 12:00 am
I jsut want to say thanks for the article it was very informative. I am having this proceedure on november 10 th in cinncinatti ohio. I hop eall goes well however I am scared also! I hope that it is worth this being i am driving 12 hours to get there.

Thanks
barbarar cary
stephanie b
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Oct 28, 2009 @ 12:12 pm
To Barbarar Cary

I have an uncle who had the procedure done about two years ago and I just wanted to give you some support. I know you are scared and so was my uncle he didnt have to drive as far as you are having to but I feel that once you have the surgery you can start living again like my uncle. My thoughts and prayer are with you and I hope all goes well for you.


Stephanie B
thepostman25
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Feb 2, 2010 @ 2:02 am
I was admitted to the hospital 3/15/09 with acute pancreatitis. The doctors DID NOTHING for 30 days, saying the pancreas would sometime heal it's self. I stayed in the Hospital for nine (9) weeks with two(2) operations mid April 09 and the second around the first of May 09. As for as the recovery period It has been seven months since I left the hospital and i'm only about 60% back to my normal self. Pain medication EVERY day since I left the hospital on 5/22/09. I was fortunate that no cancer was found. But this is a very serious operation. Think long and hard before you let them cut you open.


J T Parker
Pensacola FL
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May 15, 2010 @ 9:09 am
I was wondering if anyone has had this procedure with an Islet Cell transplant? I am having this surgery at the University of MN next month and getting kinda nervous.
Thanks!
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Jul 29, 2010 @ 12:00 am
Kayla~
This is Selena-are you seeing Dr. Beilman? I had this procedure with an Islet Cell transplant on 3/22/2010. I think that from this post you have likely had your surgery but I'm still wondering how you're doing?

The first two days after surgery were or are hell-I won't lie, lol; but after the third day it seemed like my pain meds were finally working.

I have not been able to return to work at four months out yet. I had an appointment with my diabetes doctor a few days ago and was told that my Islet Cells are doing wonderful; however, if I supplement with a bit of 24 hour insulin then the Islet Cells don't have to work so hard and will likely last longer.

Let me know how your doing. You're the first person I've typed to that has had this procedure.
Thanks!
Selena
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Aug 21, 2010 @ 2:14 pm
pancreas resections are performed by surgeons
generally they are not trained in 'gastroenterology' which is a subspecialty of internal medicine
instead most general surgeons that perform pancreas resection have additional training in gastrointestinal surgery or surgical oncology.
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Oct 23, 2010 @ 7:19 pm
I had a TP-IAT at UM-Fairview with Dr. Beilman on 10/19/2009. After suffering for years, and multiple surgeries on my pancreas, the TP-IAT has been the only thing that has ever helped me. I had complications from surgery and spent 5 weeks in the hospital (an obstruction). I still have some ups and downs (possibly some bile reflux [but they don't preform the surgery the same way anymore] causing some pain and nausea) and my energy isn't back to what it was before I got sick, but the surgery has been worth it a million billion percent.
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Nov 9, 2010 @ 10:10 am
I am a 67 year old male and had the full pancreaticoduodenectomy in December 2008 at a private hospital in London UK. I am now fine and well, play golf three times a week (on foot!) and go ski-ing each winter. I've had none of the complications itemised here and suffer only from frequent steatorrhea which I'm trying to address with varying doses of insulin, Creon and emeprazole. Any help on this from anywhere would be appreciated.
If you are facing this proceedure please be reassured. Without it I would now be dead and I don't intend to let that happen any time soon.
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Nov 15, 2010 @ 9:09 am
I just had a distal pancretectomy with removal of spleen and gall bladder. I am currently having bouts of nausea treated with Phenergan. My meals are very small, but frequent. Is this normal? I was told by doctors that I could resuem my regular diet even though I have concerns about insulin levels. Can someone pleae speak to this. Thank YOU!
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Nov 19, 2010 @ 11:11 am
Natalie, the nausea will pass but you will learn to re-define "normal". It will not be as it was before, your system is different and your tolerance and reactions to foodstuffs are different and you will only learn by trial and error. Little and often is fine and insulin levels will stabilise with or without some assistance. Talk to your medical team as often as you need to, stay positive and flourish. Whatever you're going through sure beats the alternative !!
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Jan 14, 2011 @ 9:09 am
Thank you all for your comments. I have three children with hereditary Chronic Pancreatitis and so far one of them has had a total pancreatectomy with Autoislet transplant - which did not work very well - and another who is having the same procedures next month. The third will most likely have her pancreas taken out late in 2011...nothing like being a textbook case!

Our 17 year, old who now lives without his pancreas, is still trying to fine tune his diet and while his glucose control is good, with insulin - he suffers frequent bouts of lower GI distress. Some of this can be attributed to his "teenage" dietary stubbornness - We are hopeful that as he learns more about what works and what doesn't he will be able to get a handle on this element of his recovery. ( had his surgery in August)

We would highly recommend the team at the University of Pittsburgh Medical Center where a great deal of genetic research is performed for this condition.
Bob Buckler
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Jan 24, 2011 @ 10:10 am
This is a wonderful forum. I underwent a distal pancreatectomy and splenectomy in 7/2009 for neuroendocrine pancreatic carcinoma. My tumor was 1.8 cm and confined to the pancreas--no lymph node involvement or metastases. I'm a very lucky man. I had severe complications after surgery, debeloping a fistula and massive infection. I had to be hospitalized five more times, and even suffered septic shock. But, here I am. I was wondering if anyone had continued abdominal stress and loose stools after this procedure. I tried taking Creon for a short while but it seemed to give me more nausea and pain. So, my surgeon said to stop taking it. Well, 1.5 years later I'm still having the same symptoms. My doctor told me to go back on the Creon but at much larger doses. Has anyone been given this advice or found a way to relieve these symptoms? Any advice would be appreciated. Thank you!
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Feb 3, 2011 @ 4:04 am
Bob,I'm still suffering all those GI problems two years after surgery, and I've been on Creon from day 1. My surgeon says increase the Creon, can't OD on it, and I'm now up to about 22 per day (40,000 size). I think my insides are behaving better as a result, but it does take a long time to adjust and they told me it would so I'm not particularly anxious about it. Hope this is helpful.
Jacob Tovio
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Feb 12, 2011 @ 3:15 pm
I too had a distal pancreatectomy and splenectomy on December 29, 2010. My tumor/cyst was confined to the tail end of the pancreas. I too am a very lucky man. My faith, prayers and family support has kept me in a positive state of mind. The mass that was removed came back negative, non cancerous, benign. I had no symptoms other than the mass that was found via ultrasound, then CT Scan and MRI. Blood work came back normal, which was a good thing. I was in the hospital for 7 days and then started on solid foods on the 7th day. I still have leakage on my left side of my body where the JP tube was located. Last week my doctor ordered a colostomy bag to be placed over the wound so that he/nurse can measure how much leakage there is on a daily basis. He told me if it continues to leak heavy, I would have to be admitted back in the hospital for a couple of days in order for the pancreas to completely heal. But, the leakage has been minimal, 20 mil, and now it has dwindled down to 10 mil to 1 mil per day. My meals are very small. I am 45 years young. My biggest problem is that I really can not do anything physical until my wound heals. I am active, athletically fit, but have lost 25 pounds from the date of my surgery to the present day. I love this forum. My doctor was surprised that I have not taken any pain medication as of yet. During my stay in the hospital, my pain was minimal, but my pain tolerance is very high.
Mark
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Feb 14, 2011 @ 7:19 pm
Had a partial pancreatomy in September after two years of unsuccessful stent treatments for pancreatic cysts. Took my spleen. Feel pretty good.
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Feb 20, 2011 @ 3:15 pm
My mom just had a pancreatectomy with a spleen laproscopic procedure. She is home now after about a 4-5 day stay at the hospital. She has had a lot of back pain and nausea, gas pains, and a bitter taste in her mouth. She barely moves around but we are wondering is there anything she can take or any home remedies for her symptoms and how long should she expect feel this way.
vanessa
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Mar 20, 2011 @ 8:08 am
My husband just got back home now after two(2)weeks of recovery in the hospital from a Total Pancreatectomy(surgery).We are confused of what proper foods should he take.Can anyone please tell us a site or a link where I can visit to,as for his diet reference.Thank you so much.This forum is very much helpful.
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Apr 9, 2011 @ 8:20 pm
I had a total pancreatectomy with Islet cell transplant done on February 10th, 2011 at UPMC. (10 weeks ago) The smell of food nauseates me. I am having a very difficult time eating. My mouth gets dry, sticky and has a strange taste that when it gets stronger, leads to periods of more intense nausea. I am trying to find someone else who has had this procedure done as a support to talk to. Did you have problems with sigbificant nausea and bad tast Did it go away and if so after how many months. Please respond if you have had similar problems. Thanks, Katie
Betsy
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May 6, 2011 @ 7:19 pm
Hello All,

I will be having the total pancreatectomy with Islet cell transplant done soon. Not sure of the date yet. Will be meeting with a surgeon on May 26th. I am nervous, but confidant, because I trust my doctors advice to this surgeon. I am having it done at Johns Hopkins Hospital in Baltimore, MD. My surgeon is suppose to be one of the best in the country. Boy, I hope so. But I am 100% confident in my GI doc who has recommended me. I would appreciate any detailed information about this surgery.

Thanks,

Betsy
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May 23, 2011 @ 3:15 pm
I will be having a distal pancreatecoy and spleen. I have not scheduled the operation because I am scared. From reading the comments, it seems that the recovery will be extensive. Tumors were found in the pancrease after a CSCAN. No melignant, but I have lost 3 immediately family members; Mother and two sister. I canceled the operation once, am I being a coward for thinking of canceling it again.
Karrie
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Aug 11, 2011 @ 11:23 pm
My brother has had a pancreatectomy due to severe alcoholism after many warnings to stop drinking and suffering from pancreatitis for many years. What is his prognosis? Total honesty please. Thank you.
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Oct 8, 2011 @ 12:12 pm
Good article I wish I would have found a year ago. My husband had a distal pancreanectomy on Nov, 22, 2010. Did gamzar, radiation with 5FU and Gemzar again. He got better for about 2 months and then stomach aches began again. He found a lump on his incision. It was biopsied and andenocarcinoma is back. Does anyone know if this is common? Does that mean he had a poor surgeon. Anyone else had this happen. Thanks, Deb
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Oct 22, 2011 @ 9:09 am
i have diabetis 2 for years i have high sugar readings. all of a sudden i am having real low sugars after eating good meals. i eat super and before my sugar reading is about 100. i give myself insulin acording to reading and soon after my sugar goes way down to 33-42. i have seen my doctor and she decreased insulin but it is still happening every pm. i am beside my self and am looking for all kinds of info for this. i am starting to think something is very wrong. i am looking for any advise. any suggestions? help/
john summerton
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Oct 26, 2011 @ 6:06 am
I had a radical pancreanectomy together with the removal of my spleen,gallbladder,duodenum and part of my stomach. This followed some 20 attacks of pancreatitis. This procedure was undertaken at a private hospital in perth by a team of skilled surgeons in March 1992. It has not been easy but anything is possible if you want it enough! Be well John.
Laura
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Oct 26, 2011 @ 9:09 am
Hi,
Has anyone had to have the bile duct stretched after a Whipple procedure?
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Nov 10, 2011 @ 9:09 am
hi to all,
my fiancee is in the hospital right now he has acute pancreatitis it happen so sudden were supposed to get married tomorrow but he never make it here because his been hospitalized last oct.31 and they had him put in induced coma and his mom said that right now his on his kidney dialysis im so worried about him the last time i saw and talk to him his in ICU its last november 5,and im really feel sad coz after that i never heard anything about his condition,were to far from each other i live in philippines...my question is how long it take for him to cure and get out in the hospital?
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Nov 10, 2011 @ 9:09 am
hi to all,
my fiancee is in the hospital right now he has acute pancreatitis it happen so sudden were supposed to get married tomorrow but he never make it here because his been hospitalized last oct.31 and they had him put in induced coma and his mom said that right now his on his kidney dialysis im so worried about him the last time i saw and talk to him his in ICU its last november 5,and im really feel sad coz after that i never heard anything about his condition,were to far from each other i live in philippines...my question is how long it take for him to cure and get out in the hospital?
sheila
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Jan 2, 2012 @ 10:22 pm
Hello everyone,
Last year I had a distal pancreadectom due to neuroendocrine tumors on my pancreas. Almost exactly a year to the last surgery date, the doctors found another tumor. I was thinking they would just remove it again, but the doctor recommends removing the whole pancreas. I just don't understand. The other tumors were benign. He feels if we don't remove the pancreas that before long I will be dealing with "true pancreatic cancer", his words not mine. However, I have a condition called MEN 1 which is basically a mutated gene which encourages my body to form tumors. I am currently seeking a second opinion from a physician who has more experience with MEN 1. I would appreciate any comments from people who have had this procedure done. I am very scared right now and wonder what my life will be like after the surgery. I also wonder how long that life will be. Any help would be appreciated. Thank you.
Karen
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Jan 20, 2012 @ 12:12 pm
I too underwent a total pancreatectomy with islet cell transplant at Cleveland Clinic in December, 2010. The surgery was not at all pleasant and I was out of work for about six months. I had and am still having issues with my digestive tract. I am on 36,000 units of Creon three times per day but still have bouts of bowel issues and pain. Sometimes I forget to take the Creon and the pain is unbearable after I eat and my bowels are uncontrollable. I do have diabetes but so far it is controlled by oral meds. With all this being said, the problems I have now are NOTHING compared to the pain and problems I had with the five years of chronic pancreatis (I am in the 10 percentile of unknown origin). I was on a feeding tube for three months and hospitalized for about one week out of every five-six weeks. I would do this again in a heartbeat. To all of those out there contemplating this surgery, your surgeon knows best. Don't be afraid of the aftermath; it is worth it.
lisa
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Feb 5, 2012 @ 4:16 pm
I have recently learned that I have neuroendocrine tumors on my pancreas. My tumors are spread throughout my pancreas, so my only
option is to have a total pancreatectomy. I realize that the recovery will be long and painful, but my largest concern is the nausea, stomach
problems. Just wondering how long I should expect to feel terrible. I also have heard that I should expect to lose at least 20 to 30 pounds, is
that due to not being able to keep food down or just only being able to eat small amounts? I'm looking at having the surgery in the next couple
of months, any information from someone who has recently been through this surgery would be appreciated.
kay
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Feb 9, 2012 @ 7:19 pm
Hello,im hoping you can help. I am 33 years old and due to a congenital deformity of my deuodenum,a kick from a horse and genetic factors i have chronic calcifying pancreatitis All the organ is affected. I take creon and morphine and have constant,unrelenting pain. I have done a lot of research and feel the only hope is a total pancreas removal with islet cell transfer.My problem is my doctors so far have far from helping me,augmented the problem.I live in france and would deeply,deeply appreciate any advice or if any of you know a trustworthy ,SKILLED specialist over here. I am getting desperate and fear i might end up headbutting the next doc who approaches me with a naso-gastric tube.THANK YOU FOR READING THIS
Judy Dooley
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Feb 11, 2012 @ 8:20 pm
I had my pancreas, gall bladder and spleen removed on Dec 29th. The doctor also did a hernia repair prior to the organ removal. Surgery took 8 hours. I was in ICU for 4 days and released from the hospital on the 8th day after surgery. I experienced little pain after the surgery. I had 7 cysts on my pancreas, all contained cancer cells, but the cancer had not spread to any lymph nodes. My doctor said "No pancreas, no cancer." I do not have to have any additional treatments.

I am now an insulin dependent diabetic (I had Type II prior to surgery, but it was controlled with medication, diet and exercise). I will go on an insulin pump within the next month. At first, I did not have much of an appetite; I had to make myself eat, but now, I am able to eat a normal diet, counting carbs and taking insulin shots. I have lost about 20 pounds, but I feel great and know that a full recovery is close. I would have this surgery done again in a heartbeat.

I started driving 5 weeks after surgery and returned to work in just over 5 weeks--working 2/3 hours per day--but at least I am out of the house. I am so happy to be able to resume my normal activities. Can't wait to get back into the gym.
kay
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Feb 12, 2012 @ 12:12 pm
Thats amazing,im so glad for you!who was your doctor,the surgeon? Did you have the islet cell implantation or was it useless because you already had Diabetes?? You have a second chance and i wish you all the best
Judy Dooley
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Feb 12, 2012 @ 1:13 pm
Thank you. Dr. Keith Grey, University of Tennessee Hospital Cancer Center. He is an excellent doctor with a wonderful bedside manner--Very, very caring. I did not have the cell implantation.
kay
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Feb 12, 2012 @ 4:16 pm
Thats amazing,im so glad for you!who was your doctor,the surgeon? Did you have the islet cell implantation or was it useless because you already had Diabetes?? You have a second chance and i wish you all the best
Elizabeth
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Mar 30, 2012 @ 10:10 am
I had a distal pancreatectomy and spleenectomy in early February. I also have Crohn's disease. It's almost eight weeks following surgery and I'm still experiencing swelling and pain around my incision. Is this normal? Everything I question get the response of normal. When will this swelling and pain go away?
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Mar 30, 2012 @ 10:10 am
I have just been diagnosed with pancreatites caused by calcium in the pancreatic duct and the pancreace. Yesterday the consultant told me that the damage is done but he would like to try me on a tablet (Antox) used in america which has had some success at reduceing the pain. The only other procedure for me if this does not work is the removal of the pancreace. This procedure has me very worried as i have lost so much weight and am quite run down now. I would like to hear from anyone who knows about this tablet or the causes of calcium build up in the pancreas
Jessica
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Apr 16, 2012 @ 1:13 pm
I am 34 and had my total pancreatectomy on feb 16th because of pancreatic cancer. Also had my spleen, gal bladder, and part of my stomach removed. Stayed in hospital about a month. Surgery went well and removed all cancer for now but the recovery process has been rough. I too found it hard to eat. I was nauseous but could keep food down. Had to be re admitted to hospital for dehydration. Appetite is way better now. I do have crazy gas when I eat no matter how bland my meal is. It's not always painful more uncomfortable. You can hear my rumbles from accross the room. I take gas x for it and it helps slightly. I am also mal nourished. I have dumping or diahreha after every meal. I take creon but my surgeon said I'm still not digesting my food. I've lost a ton of weight and can't gain. I'm hoping this will change. I look like a bag of bones. Anyone lose a lot of weight and eventually gain back? I've tried adjusting creon, drinking protein shakes, eating high calorie foods. I'm just holding steady.
Jessica
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Apr 16, 2012 @ 1:13 pm
I am 34 and had my total pancreatectomy on feb 16th because of pancreatic cancer. Also had my spleen, gal bladder, and part of my stomach removed. Stayed in hospital about a month. Surgery went well and removed all cancer for now but the recovery process has been rough. I too found it hard to eat. I was nauseous but could keep food down. Had to be re admitted to hospital for dehydration. Appetite is way better now. I do have crazy gas when I eat no matter how bland my meal is. It's not always painful more uncomfortable. You can hear my rumbles from accross the room. I take gas x for it and it helps slightly. I am also mal nourished. I have dumping or diahreha after every meal. I take creon but my surgeon said I'm still not digesting my food. I've lost a ton of weight and can't gain. I'm hoping this will change. I look like a bag of bones. Anyone lose a lot of weight and eventually gain back? I've tried adjusting creon, drinking protein shakes, eating high calorie foods. I'm just holding steady.
Neil
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Apr 17, 2012 @ 9:09 am
Sheila, I too have MEN1 and recently from my annual MRI they found a 3cm lump and want to do a total Pancreatectomy due to a number of other tumors found throughout the whole Pancreas. The Surgeon told me that he could do a partial leaving some of the tumors in the head but he could not guarrentee i wouldnt be back in a year having the rest out.
So I am at a crossroads. I know with a total I will become insulin dependant. But I am guessing I run this risk with a partial plus a possible revisit in 12 months. Did you become insulin dependant after your partial?
mstrauss
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Apr 20, 2012 @ 5:17 pm
I had a partial distal pancreatectomy/spleenectomy and surgery to repair collateral damage caused by my pancreas last July. I still have some pain but the mind-boggling pre-surgery pain levels -- which caused me to spend too much time in the fetal position -- are gone. Surgeon was extremely difficult to find (4 consults with 4 different opinions!) but I got lucky with the good one.
Problem now is my blood sugar levels are often high (although sometimes "normal"). I am not (yet) on insulin but my blood sugar levels defy logic. I can eat foods that are theorectically good for a diabetic and have high numbers and eat "bad" foods and have normal numbers.
Anyone have that exerience?
Patrick
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Apr 21, 2012 @ 7:07 am
I am 53 from Melbourne and had my total pancreatectomy and total spleenoctomy in Oct 2011 being diagnosed with pancreatic cancer. The ‘Whipples surgery’ done on me had my gall bladder, part of my stomach and jejunum removed. Surgery went well and I am told by my surgeon that the endocrine tumour and affected organs were removed. The recovery process went fine with (mostly) excellent nursing care at the hospital and a very caring surgeon. I was in the hospital for 3 weeks instead of 1 week. The stay extended due to a infection caused by a nurse sneezing on my stomach where the food tubes were and I had to get another tube to remove the fungal discharge from my stomach. I did have nausea, gas and constipation initially, including swollen testes. Appetite has been fine all along.
Currently, I suffer from diarrhoea with stools at the slightest intake of any meals. I still experience gurgling and growling in the stomach. I notice that taking inner health plus (priobiotic) in the morning and night helps to keep it in control. I am malnutritioned and have lost 22 kgs in the last 6 months and still loosing 1 Kg every 3 weeks. I suffer from Steatorrhea with fat in the stools, due to my indigestion. I take Creon 25000 units, 3-4 capsules for main meals and 1 capsule for in-between snacks. I also take Amoxycillin (antibiotic), proform (protein supplement) drinks, low fat/gluten free meals and nexium (antacid). Though I have to manage my sugar levels for which I take insulin injections which is under control, my main concern is my diarrhoea and weight loss, for which neither my dietician nor doctors have little clue. I also seem to be getting a (itchy) rash all over my upper body.
Not Sure if someone post Whipples has/had diarrhoea and weight loss and know of any solution.
Patti
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May 20, 2012 @ 7:19 pm
My husband just had a partial distal pancreatectomy on 5/7. Just came home from hospital on Wed 5/16. He had NET VIPoma in the body and tail of the Pancreas. This particular NET tumor causes raging amounts of a vasoactive intestinal polypeptide (VIP) to be excreted causing him to have profuse watery bowel making it difficult to maintain electrolytes and in constant risk of heart failure and other issues due to inability to keep Potassium and other lytes normal. He was not originally diagnosed as a surgical candidate 3+ years ago but had a short round of chemo to get his bowel under control back in 2009 and then he went to Houston Tx where he received Indium-111 as a part of a clinical trial. These treatments left him symptom free for almost 2 years and he regained much of his stamina. Long story short he began having major symptoms again last July 2011 and CT Scans and tumor marker tests indicated the peptide hormone was extremely active again and he was referred to a City of Hope Surgeon for assessment to see if he was a surgical candidate. This was his only option at this point. The surgeon said that it looked as tho his whole pancreas would probably be removed, his spleen and he would have to have a portal vein resection because the cancer was on the portal vein. He had 9 chemo's between Dec 1st and April 4th of this year to get his bowel under control to have this surgery, but he was still very compromised physically. We were warned of all the possible complications and risks of this surgery, but knowing that some other complication of previous treatments were likely going to harm him or take his life, he opted for the surgery. He is 65 years of age and has always been active. He did have a minor bladder infection from the foley cath and a mild infarction due his heart being stressed from the pain while in hospital, but was released from the hospital much sooner that expected after only 9 days. Pain management is our greatest issue right now. No signs of infection, he has a drainage tube which we hope can be removed fairly soon, but we continue to be grateful for each day that he moves away from surgery without issues. He has no appetite, which I see from other comments seems to be a common thread, but his bowels are working only once a day which is just a miracle. We know that there are residual cancer cells in his body since we found out that there were two lymph nodes that had to be removed, but feel really grateful to know that this thing is out of his body. We know we have months of PT and getting his strength back and finding new ways of eating and that the pain takes a while to dissipate, but as his wife and caretaker of 3+ years I believe I've witnessed a real miracle. Get the most knowledgeable Oncologists, Surgeons and Medical professionals in the field of your disease. We have been on a journey and blessed to have a wonderful Oncologist who did his fellowship in "pancreatic tumors" and top surgeons in the field of Pancreatic tumors (NETs)
Patti
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May 20, 2012 @ 11:23 pm
My husband just had a partial distal pancreatectomy on 5/7. Just came home from hospital on Wed 5/16. He had NET VIPoma in the body and tail of the Pancreas. This particular NET tumor causes raging amounts of a vasoactive intestinal polypeptide (VIP) to be excreted causing him to have profuse watery bowel making it difficult to maintain electrolytes and in constant risk of heart failure and other issues due to inability to keep Potassium and other lytes normal. He was not originally diagnosed as a surgical candidate 3+ years ago but had a short round of chemo to get his bowel under control back in 2009 and then he went to Houston Tx where he received Indium-111 as a part of a clinical trial. These treatments left him symptom free for almost 2 years and he regained much of his stamina. Long story short he began having major symptoms again last July 2011 and CT Scans and tumor marker tests indicated the peptide hormone was extremely active again and he was referred to a City of Hope Surgeon for assessment to see if he was a surgical candidate. This was his only option at this point. The surgeon said that it looked as tho his whole pancreas would probably be removed, his spleen and he would have to have a portal vein resection because the cancer was on the portal vein. He had 9 chemo's between Dec 1st and April 4th of this year to get his bowel under control to have this surgery, but he was still very compromised physically. We were warned of all the possible complications and risks of this surgery, but knowing that some other complication of previous treatments were likely going to harm him or take his life, he opted for the surgery. He is 65 years of age and has always been active. He did have a minor bladder infection from the foley cath and a mild infarction due his heart being stressed from the pain while in hospital, but was released from the hospital much sooner that expected after only 9 days. Pain management is our greatest issue right now. No signs of infection, he has a drainage tube which we hope can be removed fairly soon, but we continue to be grateful for each day that he moves away from surgery without issues. He has no appetite, which I see from other comments seems to be a common thread, but his bowels are working only once a day which is just a miracle. We know that there are residual cancer cells in his body since we found out that there were two lymph nodes that had to be removed, but feel really grateful to know that this thing is out of his body. We know we have months of PT and getting his strength back and finding new ways of eating and that the pain takes a while to dissipate, but as his wife and caretaker of 3+ years I believe I've witnessed a real miracle. Get the most knowledgeable Oncologists, Surgeons and Medical professionals in the field of your disease. We have been on a journey and blessed to have a wonderful Oncologist who did his fellowship in "pancreatic tumors" and top surgeons in the field of Pancreatic tumors (NETs)
Neil
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May 24, 2012 @ 7:07 am
mr strauss.
I have very wierd BG levels. I have heard that this can be due to my hypercalcemia.
I can start a meal at 11 and then 2 hours after a meal with icecream and fruit for dessert I get a 6.5!
Anyway after I have had my parathyriods resected I will find out if I have better BG control.
Nancy
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May 31, 2012 @ 10:22 pm
Hi all! I am Nancy. Im 34 and have been suffering from acute pancreatic attacks since I was 18. I now know it is because I have a pancreatic divism. Due to so many attacks and just being diagnosed with the divism 10 months ago I have less than 1/4 of my pancreas that is not scar tissue. My family and I live in constant fear that my next attack will be my last. They come out of no where. I've changed everything I feel a hundred times over with my lifestyle and eating habits. I gain weight not lose it and I rarely have bowel movements and by rare I mean RARE. I am so used to living with the pain that I just don't know when it's time to go to the ER it's bad. Bad as in I has steamed squash for dinner with my 40,000 units of enzymes and I still needed a pain killer and zofran and I'm ON FIRE. I look 20 months pregnant which is ridiculous because the rest of me is mal nourished. I feel crazy because my symptoms seem so different. I am one week since discharge from my last acute attack and was asked to consider the full proceedure. I'm of course scared but soo relieved to get this time bomb out of my gut. I've been looking for a forum of persons that are/have been here. I know so many "natural healers" that want to fix me but I feel like with the pancreas in such bad shape there may not be time to explore those options. I trust my GI at mayo and I hope that someone will have advice for my family and I as this seems like the best place to ask for it.

Thank you for sharing it means the world to me
~nancy
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Jun 4, 2012 @ 12:12 pm
Hi, I had a Whipple 5 years ago for an IPMT - they removed the head, duedanom, 1/2 my stomach, part of small intestine and common bile duct, I already had had my gallbladder out a few years ago. I suffered from actue pancreatitis for 15 years and then they found the tumor. I was in for 2 weeks and went home with a drain as I had gotten a bad infection over the liver. I went to see a nutritionist who put me on a wheat/yeast/gluten free diet and was finally able to manage eating. I now take Creon, but not in the amounts that seem to be the norm (I may have to up mine), my problem, which they have not yet addressed is constant swelling and pain in the abdomen - usually by the end of the day I look like I am 9 months pregnant and very sore. If I stand too long this also happens. I was wondering if anyone in this forum has had the same problems and if they were able to be treated for it. My family doctor thinks it might be trapped gas and fluid which may be the case, but he does not know much about the after affects of a Whipple.
Craig
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Jul 6, 2012 @ 7:19 pm
My wife (58) was recently diagnosed with a intraductal papillary mucinous neoplasm (IPMN) type of cyst on her pancreas. Prior to the diagnosis, she had been hospitalized three times for acute pancreatitis in the last year. The cyst is believed to be the cause of the pancreatitis attacks. Since this type of cyst can eventually become malignant, the decision was made to remove the part of her pancreas where the cyst is located. My question is regarding the quality of life after a distal pancreatectomy. Will she have to be on insulin and digestive enzyme supplements the rest of her life? Can you loose half your pancrease and still live a fairly normal life? Thanks in advance for sharing any information or experience.
Debra
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Jul 18, 2012 @ 11:11 am
Fall of 2006 - I (54 at the time), my brother 10 yrs younger, his 16 yr old son and our 22 yr old neice all had totals - pancreas, spleen, appendix, gall bladder, duedanom, part of the intenstine and part of the stomach at the Mayo, Rochester. They all had islets transplanted, my pancreas was totally atrophied by the time they caught it. None of them excret enough insulin and have to inject as I do. A 15 yr old cousin just had the same surgery at the Mayo/U of MN two weeks ago. Her father (31 and our first cousin) died during the surgery in 1999. The new train of thought by the Mayo/U of MN is that if they can do the surgery early on in this disease they hopefully will have enough islets to transplant, thus eliminating the diabetes factor.
Yes, we have hereditary pancreatitis. Our family has been in a research group at the Mayo/Sloan Ketterling and U of Pittsburg since the 1990s with over 60 family members testing positive with the gene. We have lost my 36 yr old sister, two 36 yr old aunts and my dad in his 70s from pancreatic cancer. Some have been hospitalized numerous times with attacks and some are like me - I had minor attacks when I was 7-8, then nothing until an annual physical found my sugars to be in the 400s and, due to the bad gene, the Mayo tested me and found that my pancreas had atrophied and was now "pre-cancerous). Yes, there are all sorts of issues afterwards and we don't like the option they have found for our family, but every day we thank the good Lord and the Doctors at the Mayo and elsewhere who have given us this option. I have now lived 24 yrs longer than my sister and two aunts!!! They do have several other types of enzymes other than Creon that have recently been approved. And yes, I have a sibling and a couple of neices who have had the partial and they live a normal life - they do have to take enzymes which they had taken previous to the surgery but they do not have to take insulin. I'm sure it depends on how damaged your wife's pancreas is. No matter what,my total and their partials, we all feel that it was very well worth it.
Andrew Davis
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Aug 5, 2012 @ 3:03 am
Not been here for a while, previous posts are at 10,12 and 15. A quick update now that I am over three and a half years post op the full proceedure. Eating, steattorhea, wind, weight stability and general digestion are all much improved due to two main factors. Much bigger doses of Creon than many of you are quoting, I take 6 - 10 40,000 size with every meal and 3 - 5 with every snack. Secondly, and just as important, is that I avoid fat in all its forms as much as possible. These things work for me and I'm eating and drinking and living a normal life. Every time I went for a check up and told my surgeon my insides were still a mess he said "take more Creon" so now I do and am much better as a result. Hope this may help.
Solomon
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Aug 9, 2012 @ 9:09 am
I had surgery five weeks on my tail of the pancreas and I still have drain,is it common for this long? How long it will leak?
Jean
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Aug 17, 2012 @ 9:09 am
I had pancreas tail removed due to cyst in pancreas duct also spleenectomy, this was performed by keyhole surgery 5 weeks ago I am now getting pains just below centre of chest around asophagus area it's painfull to touch, any ideas what this could be, I'm also feeling tired all the time,
ouihman
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Aug 20, 2012 @ 7:07 am
My mom has a tumor in the pancreas area anyone knows any doctor who deal with this kind of disease?
please let me know.
god bless
Barbara
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Aug 23, 2012 @ 8:20 pm
My 26 year old daughter had a precancerous mucinous cyst on her pancreas. She had a Distal Pancreatectomy and Splendectomy on July 31, 2012. They removed tail. She was in hospital 8 days. She is eating only about 700-1000 calories a day. Has lost 15 pounds. Experiencing pain and nausea if she eats too much. Doesn't really have an appetite. Has feeding tube but hasn't had to use. Wondering when this gets better.
susan
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Aug 26, 2012 @ 7:07 am
I had a pancreatectomy and splendectomy on 23rd july 2012, today nearly 5 wks on , I took my motor out for a drive a few miles down the road , it was o.k. Each day has been a very slight progression but looking back from when being discharged ,its |a mega improvement. I eat well although my taste has changed slightly, coffee which I liked very much makes me feel really sick . I just had regular meals , small ammounts and this has got better, my weight is coming back and last night was the best night sleep yet. I too was tired in the beginning so took a gentle lron supplement which has made a difference, but its still early days and a big operation so it must take a while , the doctor said it would take about 3 months , hope this helps.
John
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Sep 10, 2012 @ 11:11 am
I thng this is a very serios operatons and shold be consider without any other options before going uner the knife
Sarah
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Sep 18, 2012 @ 4:16 pm
2yrs out from surgery after suffering from chronic pancreatitis for 15 yrs. Now enlarged liver, very sick. Has anyone seen this?
Mary
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Oct 7, 2012 @ 8:20 pm
My brother had surgery for the second time for a Pancreatic Tumor and Chronic Pancreatitis. He had a "Whipple" done in 03 for a tumor on his pancreas. It was benign. Since then, he had pain, wt loss, food intollerance, and stomach problems. Friday he had a total Pancrectomy, Spleenectomy, Tumor, and part of his stomach removed. He is still in ICU and I have not been able to know much from the surgery. I have so many questions. He is going to be on an Insulin Pump, which regulates his Insulin in his body. How long does this recovery take? He was so sick the last time, and spent over 10 days in the hospital. Now he may be in longer, dedending on his progess and diabetes control. He has always taken care of himself physically and yet has had these problems for years since he was younger. He is now 55. I find this to be a very interesting web site for people who have experienced the same surgeries. I would love to talk to others about this and know how they did. I was tested for the gene seeing my mother and all her relatives, which were women, died from Panreatic Cancer. He is the fist to have 2 benign tumors. I do not have the gene for it, but have been told I have had pancreatis. Maybe I can get some feedback from people with this situation. Thank you ntdogrudy7
Janet
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Oct 13, 2012 @ 9:09 am
My husband had Wipple surgery @ Ochner's (New Orleans) due to having a benign tumor on the head of his pancreas. He had this done in 2006 with a lengthy hospital stay and home with a feeding tube, very malnourished. Surgery was a success. Now, 6 years later he developed another benign tumor on the remainder of his pancreas and just underwent a total pancreas and spleen removal @ Mayo Clinic (Jacksonville, FL) done laproscopically. He had a very confident and compassionate surgeon (Dr. Asbun) who eased his fears and worries knowing this surgery would life altering. After 4 days in the hospital I was able to bring him home to start our new way of living. Other then the usual ups and downs regulating sugar levels (very time consuming and mind boggling) he has gotten an infection around a couple laparoscopic sights, treatable, and still incurs some abdominal pain which usually gets relieved from a pain pill and several pillows pressed up in the abdomen. He has resumed some of his routines around the house, good appetite with a slight weight gain (needed badly), but does seem to tire easily at this ime. All in all it was a good decision, one step away from having cancer so we feel blessed God helped us make the right decision.
Danielle
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Oct 18, 2012 @ 10:10 am
I need to know if there is any doctors in Canada that do Pancreatectomy. My mother was diagnosed with pancreatic cancer and they sent her home and said there is NOTHING they can do. She is 59. Please someone help!! I live in North Carolina and my mother lives in Ontario.
Jessy
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Oct 20, 2012 @ 7:07 am
Danielle,
Johns Hopkins in Baltimore. You can call the main number and ask for on call oncologist. They will probably see her on Monday...that's what happened to us last year... Good luck and best wishes to you and your Mom!
Leah
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Oct 30, 2012 @ 1:13 pm
I am so grateful I found this forum! I have been struggling post ERCP with all ducts cut and dilated and stents put in. I have chronic pancreatitis...auto immune form...not due to ETOH...what a struggle these last 4 months have been but, I am so encouraged to see I am not alone.
Dawn
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Nov 9, 2012 @ 3:15 pm
I go in on November 16, 2012 to have the tail removed and possibly my spleen. Any ideas on what kind of things to expect after my surgery? Any information would be helpful.
Thanks
Dawn
Bruce Reitman
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Nov 17, 2012 @ 4:16 pm
I had the TP/IAT on 9-27. The severe chest pain is gone but still nauseous and some bowel pain. When will this go away, so I can get my life back.
Neil
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Nov 17, 2012 @ 6:18 pm
Hi Dawn,

It has been 6 weeks since I had 2/3rd of my pancreas removed. They managed to keep the spleen even though my splenic artery was not in the most convenient of places apparently.

Was in hospital for 6 days (3 on High dependancy and 3 on normal ward)
1st day many tubes and dressing and nurses watching me.
5th day - most tubes now out and nurses paying less attention to me. :-(
6th day - doc said I could go home
7th day - little bit panicky that I dont have a hospital around me and the withdrawal effects of the epidural etc are hitting home. Cant eat very much. Only v.small portions so I try to make it as nutritious as I can. Eating peanut butter for the first time in 20 years!
10th day - feeling better and don't feel like rushing back to hospital.
14th day - feeling better still. But still shuffling around like an old man. Abdomen muscles do a lot of work! Anyway staples out of abdomen and wound looking tidy.


Now on insulin (basal/bolus) regime.(Bit of a pain this part of life but I am sure I will get used to it)
Not on Creon.
Wound healing. Still feels numb and tight but the cut is a neat line and the swelling has gone down a lot.
Took the car out for a drive today and could manage that ok. (DLVA and insurance company informed and approval received)
All in all not feeling too bad about it considering the alternative.

I used to exercise a lot before. I think the healthier you can be going in the better.
Dont panic. Make sure you have lots of visitors. Nurses pay more attention to you when you have others paying attention to you.

You will feel like you have been hit by a truck. but it does get better. I still have a bit of a mountain to climb but after a few weeks at least you will feel as though it is possible. Dont forget hospital drugs can make you think and feel very different but it all passes away eventually.

If in need of chat. email is neilalastair at hotmail.com
carolyn
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Nov 22, 2012 @ 9:21 pm
you can get lots of info on about every issue related to the panky on facebooks support groups. type in pancreas or my powerful pancreas and the like, and ask to become a member. invaluable and people from all over the world
JustinD
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Nov 24, 2012 @ 5:17 pm
Don't subscribe to Facebook sorry :-(


68
carolyn

Nov 22, 2012 @ 9:21 pm
you can get lots of info on about every issue related to the panky on facebooks support groups. type in pancreas or my powerful pancreas and the like, and ask to become a member. invaluable and people from all over the world
LauRe T
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Nov 26, 2012 @ 11:11 am
In regards to the Total Pancreatectomy with Islet transplant. My surgery was in April of 2012 and I can't believe the difference!! I was so sick and the pain was terrible. Love Univ. Minnesota and Dr. Greg Beilman is unbelievable. I would recommend him to anyone with Chronic Panceatitis or any other Pancreas problems.
Andy
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Dec 5, 2012 @ 10:22 pm
Hi, I'm 31 and had a distal pancreatectomy and splenectomy 2 years ago, in Edinburgh after an abdominal trauma.
My Surgeon was very happy and his team seemed happy also.
I lost some weight in the 2 weeks I was in hospital (3-4 days in ICU) but put this back on within a few months.
Since the OP i've discovered i'm Lactose Intolerant and am still experimenting with different foods.

To any one going for this OP - don't be scared, it's bad for a few days however stay positive and strong and you'll be back on your feet in no time; the hardest thing for me to deal with was digestion due to being off solid foods for so long, it's normal but can be painful as you esssentially, upon waking from the OP - have to learn to see, breathe, talk, pee, sit up, move and walk again!! After this the PTSD of the accident was the worst thing - the operation scar is a constant reminder of hospital but as most of you will know, a reminder of being alive. :)

I have a quick question for any one who may be able to answer - where if anywhere do you still (after a couple of years) experience occasional discomfort or slight pains? I've been experiencing discomfort and slight pains in my back on the left side. I first experienced this within days of the operation and it disappeared after 3 months or so; now, many months later i'm experiencing the same 'pulsing, throb' in my back; my GP thinks it's muscular (perhaps due to the trauma) however i'm going for a second opinion :/ Normal?

What's the general life expectancy of us after these operations - does any one know?

We're all a law unto ourselves I know - I smoke, drink on occasion and take drugs on occasion so i'm not exactly clean living - I just want to enjoy the time I have with my nearest and dearest.

If any one can help with these questions or needs a chat about the Operation please don't hesistate to contact me.



Thanks in advance, keep up keep on - Andy.
jeff
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Dec 15, 2012 @ 2:14 pm
Hi I had completed pancreatectomy in Febuary 1995 and I am still going strong thanks to the Hepatic team at Hammersmith Hospital London England.
Joan
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Feb 12, 2013 @ 11:23 pm
My friend had a partial pancereas surgery. After 3 mounth of constant direahhea, test found 2 spots on his panceeas. He is doing very well with a feeding tube but cannot stand the taste or smell of food, he refuses a bite of food and it has been 4 months. He has lost all taste for food and absolutely refuses to eat a bite. Has anyone had this problem after this type of surgery? Lost 60 pounds and been hospitalized 3 times for dehydration, he almost died before Dr's decided to put a feeding tube in. He has had the tube in for about a month (surgery done 4 month's ago) and except for not being able to eat is doing well.

Joan in Canada
Charlotte
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Feb 26, 2013 @ 10:10 am
Hi, I am so glad to discover this forum! I am 58, have had recurrent acute pancreatitis which has landed me in the hospital, for days to weeks, 23 times during the past 5 years. I also have chronic pancreatitis and saw the transplant surgeon @ UCSF medical center yesterday. He says I am a good candidate for the total pancreatectomy with autologous islet cell transplantation. I know I need it, as my quality of life is intolerable. I am so scared and would love any feedback from those who have had this surgery. I am so scared of the aftermath. My CP is non-ETOH related, as I haven't had a drink for over 32 years. I am equally happy to hear from ETOH related pancreatitis or any others who have had this procedure! Thank you ever so much...
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Mar 15, 2013 @ 8:20 pm
Hello,
I had 50% of the Tail of my Pancreas removed in Nov 1990. I was in so much pain post-op, I ask for an Exploratory Lap ASAP to stop the pain. A Doc from the same group did the EL and got a pay check. I got NO relief for the Pain.
Everyday I deal with pain, nausea and sometimes vomiting. Almost everything I eat causes pain and some nauses. The Surgeons and GI Docs tell me it's all due to Adhesions. I know thay are right 80% of the time. However, the other 20% of GI problems are not from adhesions. It may be a scar around a Duct, etc. The pain is a different kind.
I had a Celiac Plexus Block appx 2 years ago. It not only did not help with the pain, it gave me severe diarrhea for about 11 months. I also had an ERCP without any help. I don't know what else to do. I would appreciate a very experienced GI Doc to work me up to find out what is wrong with me and why I hurt so much. I have tried many pain meds but they usually are not strong enough to stop the pain or dull it enough for me to be able to tolerate the pain. I am starting to ask myself if life is worth trying to live this way. I have a wonderful Wife that won't let me give up.
Does anyone know of a physician that can find and treat this type of problem? It is not simple or the Docs would have already fount it--I Think !!
Please help me find a Doc that can give me my Life back !!
Thank You,
Jack
Samantha Kirkham
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Apr 27, 2013 @ 4:04 am
Hello my names sam. My husband was diagnosed with chronic pancreatitis in December. He had stent put in in feb this year which became dislodged and made him very poorly and in hospital for a week last week. He had another stent put in last week and another one yesterday with a fine needle aspiration and bile duct sweep. We are struggling to find the right information as to how to deal with all this and what to expect. Just wondering if anyone has a good knowledge of how much creon to take with what type of meals etc and how to gain some of the weight he has lost. My email is
Samantha.turner123@hotmail.com
Thank you
Jill
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Apr 27, 2013 @ 7:07 am
Betsy and any other Johns Hopkins patients, My husband is having a Total Pacreatectomy with Islet Cell transplant next month in Baltimore. He has Hereditary CP (4 generations now). I am a nervous wreck, though he is very ready to get it over and feel better. Would like to hear from other JH patients about what to expect and how things are months, and even years, after the surgery. Thanks, Jill
Thomas J. Cooney
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May 5, 2013 @ 7:19 pm
I have pancreatic divisim with chronic pancreatitis.Been in pain for about 12 years I'm 60.My Pituitary gland in my brain does not make cortisol so I'm on hydrocortisone 3 times a day and take Zenpep every time I eat.Ive had 4 stents put in my pancreas and small intestine and was told the best thing for me was to have my pancreas removed.The stents were started in Aug takin out in Oct. and a bigger one was put in.before that around 3 years before the stents,they tried to make the opening bigger by cutting it with a laser.Didn't work so on with the stents.In Feb had stent takin out and within 2 weeks had pancreatitis back so in went a bigger stent.Was sent to the bigshot at Northwestern Hosp. in Chicago and he recommended total removal of my pancreas.My Gallbladder was removed about 6 years ago.Has anyone had this problem with the Pancreas and the Pituitary both quiting on them?Would love to hear about their exp.The healing process and how they are doing.How does the insulin react to the hydrocortisone? Does anyone have any answers.Has anyone gone on disability because they can't put in the time and I miss so much work because I just can't keep up with my health.Thank you
cooneo
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May 5, 2013 @ 7:19 pm
I'm sorry, I forgot to mention that I have nash disease of the liver. will this stop my chances of them grinding up my pancreas and injecting it into the portal vein of my liver?
Miriam
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May 8, 2013 @ 8:20 pm
Are there any surgeons in Idaho that specialize in partial pancreotic removal? I just came from local small town surgeon and was informed the closest specialist is in Utah.
Terri
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May 13, 2013 @ 8:20 pm
I had an 85% distal pancreatectomy/splenectomy/gall bladder at Johns Hopkins in 7/2009 for hyperinsulinism. As many here have said, it was such a difficult surgery to recover from. 9.5 hr surgery. 10 days in hospital. Seroma developed shortly after discharge and didn't heal until 4 months later with a wound vac. I lost about 30 pounds after surgery but eventually gained it back. I needed creon and insulin. However, within 4 months the hyperinsulinism returned and I had to stop the insulin. I am going to require a completion pancreatectomy/whipple soon. I am not looking forward to going through the surgery again. But I guess it beats daily severe hypoglycemia. I am also not looking forward to the inevitable weight loss that will go along with it because I am already very thin. I hope in the end it will be very worth it and I will get my life back. For any who are inquiring about Hopkins, the drs there are incredible, very knowledgable, perform the surgery on a regular basis so have lots of experience.
Shelly
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May 28, 2013 @ 8:08 am
Jill, I read your comment above and would love to talk with you and any other JH patients also. My husband is having the Total Pacreatectomy with Islet Cell transplant in June or July. We are currently anxiously awaiting the exact date.
Zohair
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Jun 3, 2013 @ 3:15 pm
I have had a pancreactomy for hyperinsulinism and was wondering
Is there a procedure to get rid of the scar
Joyce
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Jun 23, 2013 @ 8:08 am
Hi everyone.
I had a distal pancreatectomy nine months ago to remove a big cyst. After the surgery, not only my upper abdomen is always in dull pain, but also I have been experienced severe, multiple intermittent sharp pain attacks in left abdomen lasted for a whole night in every month. My surgeon said that he never had patients complaining the pain lasted for this long. My surgeon said he is out of options. Has anyone experienced this kind of pain? It is hard to believe that I am the rare case.

Amylase and Lipase were once four times high now closed to normal. CT is normal with a 5 cm fluid collection post surgery; I saw three doctors recently, one GI doctor suggested Chronic Pancreatitis but my surgeon denied it. All doctors think drainage of fluid is not necessary. I am still in dull pain/great discomfort and don't know when the sharp pain will attack again, anyone has any advices on what can I do next?

Thanks a lot.
sammi
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Jul 3, 2013 @ 1:13 pm
hi all. for the last two and a half years i have been in and out of hospitals with problems with my pancreas. im always in agony, morning and night. im on high doses of morphine/oxynorm and have been since pretty much day one. these dont help to control my pain. i have been passed round to so many doctors and all they have said is they have run out of ideas of what to do with me, until about two weeks ago. thats when a pain specialist and a surgeon said they think its best to remove my pancreas. im already a type one diabetic and also take pancreatin tablets to help digest my food. creaon were not a option as i just couldn't take them. im 19 years of age and have no life whats so ever. dont work and dont go out anywhere. i want to have my pancreas removed but at the same time im so scared. i dont know what to do. could anyone give me any information about this operation?
michelle
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Jul 7, 2013 @ 9:21 pm
Hi, My name is Michelle and my husbands had pancreatis for 2 years now, after getting fed up with Doctors we went for a second opinion. I wish we would of went sooner...! We go this weds for the surgeon to explain what type of surgery going to do. He had a ercp 2 weeks ago and found a diverticula near the entrance of the pancreas. Also stones in the head. Not sure what they plan on doing... will keep you posted, pretty scared myself after reading all the things that could happen. He's already lost so much weight, he can't afford to lose more.
Our Doctor is at University of Cincinnati..
that's where we live.

thehsharps1992@gmail.com
Janna McIntosh
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Aug 13, 2013 @ 4:16 pm
Hi all. I am 50 and a non drinker but I had my spleen, gallbladder and 1/2 my pancreas removed 03/07/2013 after having a acute pancreatic attack mid Feb 2013. Had calcification and cysts all in the tail end of my pancreas. Had been putting up with the pain and discomfort for 5 months. Thanks to Dr Nicholas O'Rourke at the Wesley hospital. Brisbane. Queensland, I am now six weeks into recovery and apart from some slight nausea I feel pretty good.. The pain after surgery was pretty bad, but started to settle after 2 weeks. My sugar levels have been perfect since day one post op. I am just really glad to be rid of the stress of waiting for another attack to happen, and the constant pain. The pathology results showed pre cancerous cells. I am glad I had the op and very pleased with the outcome.
michelle
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Sep 18, 2013 @ 9:09 am
Hello,
My 22 yr. old son is having a pancreatectomy soon at the Cleve. Clinic. His surgeon is Dr. Walsh. If anyone has had this surgery there, please let me know how it went. He has a cycstic fibrosis mutated gene that has attacked his pancreas and he has chronic pancreatitis. Has had a feeding tube since Feb. Are preparing for surgery. Will also have the islet cell transplant. We are very nervous, but he has been so sick and we are hoping this surgery helps.
Thank you!
Sheila
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Dec 3, 2013 @ 9:09 am
My brother was diagnosed with terminal pancreatic cancer 16 months ago, which they operated and unfortunately was unable to have the whipples operation due to tumour infiltrating the major artery. He has had intensive chemo and radiotherapy treatment since and has remained stable. Last week surgeon has discussed option of a total pancreatectomy removing whole pancreas and spleen also, which will not cure but may give him a bit longer time, they do not seem to know much themselves as it is rarely done for terminal patients. Is there anyone out there in a similar position or has experience of someone with same prognosis?
Mary
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Jan 1, 2014 @ 10:10 am
My comments may answer many questions many have on this forum and maybe could help us out also. May 16th 2013 my fiance suffered a severe stomach ache. Within 24 hrs he was in the ICU fighting for his life. He was diag.with infected necrotizing pancreatitis. He had suffered kidney failure and plural infusion. If that were not enough he caught a staff infection in the hospital. After two weeks in ICU and then a week on a reg. floor he was released. within 24 hours back in the ICU. He suffered very high fevers,dehydration, could not eat and was put under due to severed pain. The hospital starved him due to the necrotizing pancreas. He also developed a sudo cyst. Back and forth to the ER over weeks, then a decision was made to bring him to a Boston Hosp. BIDMC. Again in and out for weeks at a time with long stays in between. On Aug 29th he had the body of his pancreas removed along with his gallbladder. Post op. he was in severe pain,lost 55 pounds, tube fed for months on end not to mention a severe scar. He also has a sleep disorder. Once the feeding tube was removed and he started to eat he felt better. He has gained back about 15 lbs. He still has a drain in his side due to a severed pancreatic duct. He is now an insulin dependent diabetic and takes enzymes and will for life. In a couple days his surgeon will see him and determine the next course of action. The surgeon is thinking of a stint to connect the pancreatic duct,the fear is that this procedure will not work, if not a stint then the surgeon will remove the tail of the pancreas leaving only the head. This has been a long road for him especially and his family. My fiance also suffers from lack of focus,I am wondering if anyone else has the same problem? We were told the focus issues are due to long term use of IV antibiotics (about 5 mons. continuous)The odd thing is the MD's had no idea as to why he came down with this disease. Not a drinker,no gallbladder issues. His brother did die two years ago of pancreatic cancer almost to the day when my finance was diag. I am not sure if this illness is connected to his brother but it is something to think about. I am hoping everything works out in the next few months, I know we are in good hands with the doctors at the Beth Israel Deaconess Medical Center but would like some input from others who have had similar experiences and have made a complete recovery. Take care to all.
Mary
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Jan 1, 2014 @ 12:12 pm
I wanted to add to the comments above. My fiance developed a pseudocyst that became infected thus called an abscess two weeks after diag. He also suffered organ failure and wasting disease. In addition, he became septic. I am worried about the next surgery but feel better that he is having it done at a great hospital with experienced and gifted doctors.
Mary
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Jan 2, 2014 @ 12:12 pm
I wanted to add to the comments above. My fiance developed a pseudocyst that became infected thus called an abscess two weeks after diag. He also suffered organ failure and wasting disease. In addition, he became septic. I am worried about the next surgery but feel better that he is having it done at a great hospital with experienced and gifted doctors.
Debbie
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Feb 2, 2014 @ 1:13 pm
Hi. I had a distal pancreatectomy to remove a large (8cm) mucinous cyst. Surgery was done by laparoscopy (I have 5 incisions plus the drain hole), and they also removed my gallbladder, but my spleen was saved. Today is day 18 post op, and while I still get lots of passing gas pain, I'm doing pretty well. One weird thing which just started yesterday - I have itchy red bumps/lumps on my behind, an itchy lump on one eyelid, and itchy scales on my elbows. Anyone have an idea what could be causing this? I don't go back to see the surgeon for another 12 days... should I call my generalist?
Jeanne
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Mar 20, 2014 @ 10:22 pm
Hi I had the Whipple Procedure done on June 10, 2011. Last fall 2013 a endoscopy biopsy showed that there were pancreas cancer cells in the tail of my pancreas.
My surgeon has me booked for surgery on April 11/14 to remove the rest of my pancreas and my spleen.
Surgeon said that this surgery will be more complicated and longer recovery than the Whipple.
He told me that he does maybe one of these surgeries once a year.
My question to you all is if ,anyone has had this surgery after a Whipple procedure, or if you know anyone who has.
Hopefully someone has. Thank-you.
Tanweer
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May 18, 2014 @ 8:08 am
This is realy a wonderfull platform to share the knowldege about the pancretesis problem.
Betty
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Jun 6, 2014 @ 7:07 am
Hi Jeanne, I'm in the reverse position. I had a distal pancreatectomy & splenectomy last September for a 6cm tumour which turned out to be a rare Neuroendocrine Glucagonoma. At the time I was told it was totally removed, problem solved. Now there are 2 large tumours in the head of the pancreas, & I'm booked to have Whipples to remove the rest plus duodenum etc in 12 days' time. Like you, I'm told it will be much bigger surgery this time because of existing scar tissue & damage from the pancreatic leak I had last time. I'd welcome advice from anyone about handling the complexities of diet while taking creon & being total diabetic. I'm in Sydney, Australia.
Nanda
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Jun 11, 2014 @ 10:10 am
Hello everyone. I love this post. I'm scheduled to have distal Pancreatectomy and splenectomy as well. I'm going under the knife 6/17/14 and i'm very nervous.I've all the posts and are very helpful. I was just curious as to expect from the beginning to recovery and how long I should expect to be in the hospital. I'm very worried about the pain as well, how long before I'll start to feel better. Any feedback would be greatly appreciated..Thanks-Atlanta Georgia
Charlie
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Jul 21, 2014 @ 1:13 pm
Anyone in charlotte have total pancreas removed at cmc I am having in done in next 30days.
Maxie
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Sep 27, 2014 @ 6:06 am
I am a 52 year old woman who had her pancreadectomy 6 weeks ago. Must say one of the worst experiences of my life! I had cyst which was getting bigger slowly so to be on the SAFE side the dr recommended removal. All was going well laprascopically but then turned into an open operation and they had to remove my spleen . My hospital stay was for 8 days but I made sure I pushed myself to get out of there! The after pain was pretty constant and now after 6 weeks I'm feeling a lot better still have pains but not as severe. Back to work next week! I just want to get back to normal! Does anyone here drink alcohol after this operation? Wondering about the effects of having a couple of beers.
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Oct 26, 2014 @ 2:02 am
My prayers out to everyone on this board. I now join you with an empathathetic heart.
My Husband had distal pancrectomy on 10/2/14. Praise God all the tumor/cancer was removed no Mets found in lymph near tumor. Last week the surgeon has started removing jp tube. Yesterday my husband started c/of feeling "icky" which followed by low grade Temps and finally some gross thick green mucus from around tube site. Spoke wit onduty\call surgeon whom says not to worry about"gump" coming from site and a temp under 101. Now it's 0300 and his temp is spiking 101.6. Gonna call surgeon again in the morning. I'm concerned about this Gump and my hubby spiking temps. Anyone else have something similar. Please advise
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Oct 31, 2014 @ 6:06 am
I have had Chronic pancreatitis since 2007. Stents, diets and pain meds. have done nothing for me. I have list 60lbs. I we not to a new GI Dr. this week and he HSA suggested to have my pancreas taken out. I was OK with it until reading all of your stories! Now I terrified and don't know what to do. I will be having the surgery in Jan. or Feb. 2015@ MUSC, Charleston, SC. Has anyone on here had it done there and how did it go. I have Genetic Pancreatitis and also it was injured by my seatbelt in a head on collision in 2003. They thought I had broken ribs until they did an ERCP and found the defect. Which explains all my GI problems from birth. I have so many questions to ask and would be very happy to talk with any of you before having the procedure done.
Thank you,
Kaaryn
kaaryn224@gmail.com

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