Anyone out there without a Pancreas

[dimes1]

Last August I went in for a Whipple operation. I had expected him to take 1/2 the Pancreas and connect the other half to my intestines. When I woke up I found out that he had completely removed it. I am of course now a type1 diabetic and have to take digestive enzymes to eat (600-800 pills per month).

I would like to know if there is anyone out there with a similar situation. My doctors tell me that this is pretty rare and they are not sure if there are some aspects of not having a pancreas that they don't understand.

Steve

[ladytaz]

Oh My!! Sheeeesh! Wow!

I don't know anything about that, but I wish you the best of luck Steve and
I'll keep you in my thoughts and prayers!

[MJM]

Last August I went in for a Whipple operation. I had expected him to take 1/2 the Pancreas and connect the other half to my intestines. When I woke up I found out that he had completely removed it. I am of course now a type1 diabetic and have to take digestive enzymes to eat (600-800 pills per month).

I would like to know if there is anyone out there with a similar situation. My doctors tell me that this is pretty rare and they are not sure if there are some aspects of not having a pancreas that they don't understand.

Steve

Steve, I haven't heard of this before but was there something wrong that they couldn't just take part of it?. I would have imagined that the whole proceedure would have had to have been explained to you beforehand and your approval given for same? It sounds dreadful. I might be wrong on this but I think they are implanting pancreas now. If so perhaps you could get a transplant sometime in the future? I'm sorry that you had to go through all that.

[sweetcheeks]

wouldnt being without a pancreas the same thing as a pancreas not producing insulin at all?

and does the pancreas do otherthings beside release insulin??

[babs2000]

Due to pancreatitis-I've been told that I virtually don't have a pancreas. I take Ultrace capsules 1/2 hour before I eat so that I can digest my food. Due to the pancreatitis I'm also a Type I diabetic. Beth

[Dewey]

Hi Steve & welcome to the forums. Whipple procedures can cause Diabetes, whether half or all of the pancreas is removed. Like you, I'm pretty sure there are some aspects of not having a pancreas that doctors still don't understand. Did you have this done due to Pancreatic Cancer? If so, may I ask how you are now doing? I hope & pray things are better for you now (despite the Diabetes), and that if you had it in the past, you are now & from here on out, Cancer-free!

I still have my pancreas, but like me, it's defiant & doesn't like to listen to authority.....:playingba (or, in the words of Cartman on SP, "Authorita!")

[dimes1]

I had something called IPMT, which while it is the slowest Pancreatic tumor to evolve into cancer, it will. The good news in this is that they caught the cancer while it was still encapsulated and by removal of the Pancreas, spleen, Gallbladder, duodenum and some intestines they feel that any chance of cancer is also removed.

I was very surprised when I woke up and was told that they could not save a portion of the Pancreas. I was told coming into the surgery that this tumor was confined to the head of the pancreas (which it almost always is) and that I should not be concerned about the complete removal).

None of my doctors have had experience with a complete removal of the pancreas. They do understand that I am a type1 diabetic and need digestive enzymes but are not sure what the impact is not having any of the three other hormones produced in the Pancreas and the 12 digestive enzymes.

The unknowns are why I am seeking out others. Maybe there are no differences or maybe there is some information I need to know about. I do know that I go low very quickly and often and that is why I am on the CGMS so I get alarms when I have a low.

I want to thank everyone here for listening and their concern, it is comforting to know you are out there.

Steve

[princesslinda]

Hi Steve:
Welcome. Sounds like you've been through a lot of tough things lately. I hope you'll find the support and encouragement that I have through this forum. Good to have you on board.

[dimes1]

Babs2000,

Have they determined the cause of your Pancreatitis?

The reason I ask is that I had reoccurring idiopathic pancreatitis for almost 20 years. The tumor I had (IPMT) is something that until the last 5-6 years was virtually unknown and can take many years to develop. They are now finding out that it is the cause of many of the idiopathic pancreatitis cases. If you need any information on this I will be happy to help, or you can do a google search under IPMT and pancreas.

The best way to check on this is to talk to your gastroenterologist. He may want to do a CAT scan to look at the main pancreatic duct or do a procedure called a ERCP (neither is a big deal and pretty much non evasive).

Let me know if you have any questions.

Steve

[Dewey]

I had something called IPMT, which while it is the slowest Pancreatic tumor to evolve into cancer, it will. The good news in this is that they caught the cancer while it was still encapsulated and by removal of the Pancreas, spleen, Gallbladder, duodenum and some intestines they feel that any chance of cancer is also removed.

It's good to hear that they caught it early. Thank goodness!

I was very surprised when I woke up and was told that they could not save a portion of the Pancreas. I was told coming into the surgery that this tumor was confined to the head of the pancreas (which it almost always is) and that I should not be concerned about the complete removal).

None of my doctors have had experience with a complete removal of the pancreas. They do understand that I am a type1 diabetic and need digestive enzymes but are not sure what the impact is not having any of the three other hormones produced in the Pancreas and the 12 digestive enzymes.

The unknowns are why I am seeking out others. Maybe there are no differences or maybe there is some information I need to know about. I do know that I go low very quickly and often and that is why I am on the CGMS so I get alarms when I have a low.

I want to thank everyone here for listening and their concern, it is comforting to know you are out there.

Steve

We have a local acquaintance that we met at one of the "I Can Cope" Cancer support group meetings. He was on the survivors' panel, and had the Whipple procedure done approximately 3 (or 5, can't remember which) years ago. If I can find his contact info, I could e-mail him about you (if you don't mind). Since he's been through it, I'm sure he'd be more helpful to you than the doctors or anyone else. Once I find his info. & contact him, I'll PM you. I'm also sure he'd be glad to help you. Happy you found us & look forward to helping in any way we can! :shakehand

[dimes1]

Dewey,

I am too; I am told that it is not common that they tell someone that they are cured from Pancreatic cancer. Given a choice I think t was a good trade, a few organs and being diabetic for a cancer cure.

If you contact your friend that would be a blessing. I it is a lot to deal with. The Diabetes, surgery, enzymes, etc.

I will not give into any of these things and with knowledge and support get thru all of this.

Thanks again for being so supportive.

Steve

[babs2000]

dimes1
My pancreatitis was due to a blocked bile duct due to gallstones. I thought that I was having bouts of heartburn. To make a long story short-I finnally had my gallbladder out. A year later I developed a pancreatitic pseudo-cyst that was the size of a football. Had that removed. A year later started having more problems. They found that my bile duct was blocked. I had 4 ERCP's done to put stents in. Finally they took part of my intestine and did a bypass. They said that should work for 5 years. That was in 2003. I guess I'm lucky. Thanks for being interested. Beth
PS-What enzyme do you take for digestion??

[dimes1]

Beth,

I am soo sorry that you had to go thru all of that. I truly understand, ending up with the same problem for different reasons.

I use Uyltrase MT capsules also. Between 5-7 per meal seems to work best for me. Even so there are days where they just don’t seem to work well. Over all that part is no big deal compared to the diabetes. What amounts do you use?

Do you find that other than the digestive issues are there any issues unique to having no Pancreatic function. My endo is not sure about this.

Thanks for sharing with me,

Steve

[Mollymay]

Steve, I too had a total pancreatectomy/whipple July 2006. I was diagnosed with pancreatic cyst in 2003, which were thought to be IPMN, but the cyst were small and it is difficult to tell what type of fluid is inside a cyst without a biopsy and they were too small. Over the next two years I was seen by a GI doctor and had an EUS procedure every six months. I was referred to Mayo clinic at Jacksonville, Florida and the testing continued. Early 2006 the cyst began to enlarge slightly and the ducts in the pancreas enlarged indicating IPMN (Intraductal papillary mucinous neoplasms). I had the surgery, it was IPMN, but thanks be to God it was removed before it became malignant.

I am diabetic and require enzymes, but life is good. I have been on the minimed pump for 3 months and doing well. I have some lows and highs but we deal with it and stay in pretty good control most of the time. The enzymes I take are Creon20 and I take two or three capsules with each meal and 0ne or two with snacks.

You ask about other than the digestive issues are there any issues unique to having no Pancreatic function. The pancreas secretes Glucagon. Glucagon has a major role in maintaining normal concentrations of glucose in blood, and is often described as having the opposite effect of insulin. I was told without a pancreas a low blood sugar can be slower to return to normal.

Hope this helps and if I can answer other questions please let me know.

molly

[dimes1]

Molly,

It sounds so similar. I am sorry you had to go thru all of that, it s a huge surgery and to come out of it diabetic....I know it was really too much for me to comprehend at first.

I have to keep reminding myself that the IPMT would have turned into cancer and trading a Pancreas for cancer is a good deal.

How are you healing from the surgery, any issues there? My surgery was only a month after yours and I am doing quite well from a healing standpoint.

From a diabetic standpoint I find that I go low on my blood sugars quite often, my endo tells me it is because I don't produce Glucagon and don't have the natural protection t provides. Once I am low I don't have much of a problem raising the BG, my problem is how often I get low.

Like you I went on a minimed pump 3 months ago and like it much better. I also have the CGMS because the alarms alert me when a low is coming even when sleeping.

I take Ultrase20 for enzymes but I take much more than you do. I need around 6-8 with meals and 2-4 with snacks. A couple of times I forgot to take them and would not advise it!

Thanks for responding because it is pretty uncommon to have a total pancreatectomy. Feel free to contact me any time.

Steve

[Mollymay]

Steve,

The healing process went smoothly and I really didn't have any major complications. I was in the hospital ten days and was able to travel home by car the next day after discharge.

The diabetes is the major problem. It is so time and energy consuming. I'm not complaining, just stating a fact. I'm really lucky things are not worse.
I can deal with the diabetes, digestive problems and enzymes.

Our condition seems to be very similar and if I can answer any questions I will be glad to try. Hope you continue to improve.
Molly

[parrotletzoo]

what I dont get is this, there are medical centers in the US that do autologus islet tranaplants for pancratitis why they aren't done more often. The pancreas is removed, islets are isolated and injected/transplanted into the portal vein to graft in the livers blood vessels.in the same say they do allogenic transplants. This procedure doesn't require immunosupression medications since the cells are your own and it preserves the alpha cells which produce glucagon. Obviously, exorcrine function isn't preserved and digestive enzymes are still needed but the diabetes and risk of severe lows due to lack of glucagon could be avoided in some cases, depending on the severity of damage done to the pancreas from the pancreatitis. Maybe with tumors the risk of not removing all of the tumor and accidentally transplanting those cells is too high but with pancreatitis if there are enough islet cells to transplant why not just do it?? gah, the technology is there, that it doesnt get used frustrates me! lol

I've had pancreatitis, its not fun, I feel for people dealing with it. Diabetes/digestie enzymes are better then tumors/cancer/chronic debilitating pain so i'm glad you guys are free from that too....

[dimes1]

Parrotletzoo,

I wish this had been an option for me, but the cancer risk would have been too great. I am starting to check into donor islet transplants but I have heard that the current success rate is poor. Hopefully in the near future there will be a break thru that will make this a better option.

Steve