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mcantr
@mcantr

Posts: 4
Joined: Dec 27, 2018

Pancreatectomy

Posted by @mcantr, Dec 26, 2018

I am searching for a forum or support group for people who have had a total pancreatectomy. I have a family member who had one several years ago and feel that it would be helpful if he had a way to search for the experiences of others who have had the same procedure.

REPLY

I’m so glad to welcome you to Connect, @mcantr. I especially like your relative’s point, “…feel that it would be helpful if he had a way to search for the experiences of others who have had the same procedure.”

I’d like to introduce you to @steve_b who has had a distal pancreatectomy and may be able to share more information. I’m also tagging @marvinjsturing @beachgirl23 @ahtaylor @tracyweis, all of whom have shared their experience with other pancreatic surgeries.

@mcantr, may I ask if you or your family member could share a few more details? What diagnosis led to a total pancreatectomy?

Luky06.How is the doctor going to help you?i am so sorry and i want writing my experience to you.Pancreas that woult be does’t so helpfull.so you have make surgically removed it.and so many people do it.

I wish I could be more helpful. I have had a distal pancreatectomy but not a total. What specific information about the procedure are you seeking for your family member?

Thank you for replying. This is for my son who developed chronic pancreatitis in his early 20's. Mayo ran a genetic test which showed a genetic predisposition to this. His condition was rapidly worsening so he had his pancreas and spleen removed and an islet cell transplant. This was approximately six years ago. He would like to be able to ask questions of others who have had this procedure as he doesn't know if the digestive problems he has are normal, or if some other physical issues are related. Mainly he needs a "go to" place to share information about life after a total pancreatectomy. We reside in Chattanooga where the doctors don't have a lot of experience with patients who are in the same boat. I decided to look for a population of people who have lived with this and found this page. Since I now know you're out there, I will ask him to log in and he can ask his questions and look for advice. Thank you for your time!

@mcantr

Thank you for replying. This is for my son who developed chronic pancreatitis in his early 20's. Mayo ran a genetic test which showed a genetic predisposition to this. His condition was rapidly worsening so he had his pancreas and spleen removed and an islet cell transplant. This was approximately six years ago. He would like to be able to ask questions of others who have had this procedure as he doesn't know if the digestive problems he has are normal, or if some other physical issues are related. Mainly he needs a "go to" place to share information about life after a total pancreatectomy. We reside in Chattanooga where the doctors don't have a lot of experience with patients who are in the same boat. I decided to look for a population of people who have lived with this and found this page. Since I now know you're out there, I will ask him to log in and he can ask his questions and look for advice. Thank you for your time!

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I am happy to assist in any way I can. I had a modified whipple procedure in July 2015 and then a distal pancreatectomy and splenectomy in March 2017. In the last few months I have experienced some digestive problems that prompted me to see a GI doctor. He is in the process of ruling in or out how much of it is related to the removal of part of the pancreas. I am not taking enzymes but not sure that will not be in my future. My case is complicated by the modified whipple procedure which rerouted my intestines to assist with helping my pancreas drain. While our cases are different, there may be some questions I can answer and I am happy to answer if I can. Best wishes.

@kanaazpereira

I’m so glad to welcome you to Connect, @mcantr. I especially like your relative’s point, “…feel that it would be helpful if he had a way to search for the experiences of others who have had the same procedure.”

I’d like to introduce you to @steve_b who has had a distal pancreatectomy and may be able to share more information. I’m also tagging @marvinjsturing @beachgirl23 @ahtaylor @tracyweis, all of whom have shared their experience with other pancreatic surgeries.

@mcantr, may I ask if you or your family member could share a few more details? What diagnosis led to a total pancreatectomy?

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I don't know if I can be of any help or not. I had a whipple procedure done in June of 2014. The surgeon removed most of my pancreas. The part of my pancreas that remained was so bad that he did not reattach it to the digestive system. I am on insulin and pancreatic enzyme replacement therapy. I know a lady who had an islet cell transplant several years ago, but I don't think she is a member of Mayo Connect

Hi. Like the other replies, my condition is different. I had a distal pancreatectomy with splenectomy in 2012. My blood sugars were somewhat elevated at first but came down over the next year so I'm in the pre-diabetic zone. I've had lots of abdominal pain and digestive issues that my GI doc can not figure out. Actually I'm on my 3rd GI doc because they get frustrated with me and say there is nothing wrong. Recently I had an MRI finding of mesenteric panniculitis but there isn't much that can be done with that and the doc doesn't take that disease seriously. I've tried lots of alternative tests and supplements without much success. Basically I'm hanging in there hoping it will either get better or worse.

Hi @steve_b,

There is an active discussion on Connect about mesenteric panniculitis, which I sincerely encourage you to scroll through; feel free to post your message and tag members: https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

@kanaazpereira

Hi @steve_b,

There is an active discussion on Connect about mesenteric panniculitis, which I sincerely encourage you to scroll through; feel free to post your message and tag members: https://connect.mayoclinic.org/discussion/mesenteric-panniculitis-or-schlerosing-mesentertis-auto-immune-around-small-intestine/

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Hi Kanaaz, been there, done that…

@steve_b

Hi. Like the other replies, my condition is different. I had a distal pancreatectomy with splenectomy in 2012. My blood sugars were somewhat elevated at first but came down over the next year so I'm in the pre-diabetic zone. I've had lots of abdominal pain and digestive issues that my GI doc can not figure out. Actually I'm on my 3rd GI doc because they get frustrated with me and say there is nothing wrong. Recently I had an MRI finding of mesenteric panniculitis but there isn't much that can be done with that and the doc doesn't take that disease seriously. I've tried lots of alternative tests and supplements without much success. Basically I'm hanging in there hoping it will either get better or worse.

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Hello @steve_b

As Mesenteric Panniculitis is a rare disorder, I would encourage you to watch this video from a doctor at Mayo,

Mayo has specialists that deal with this disorder. Many members of Connect have spoken highly about their treatment of this disorder at Mayo.

Again, thank all who have responded. I've tried to come up with specific questions and I'm now going to throw these out for consideration. My son is completely Creon dependent – and has issues with regulating bowel movements. 1. Does anyone have any insights as to whether or not it is possible to fine tune dosages, or in any way head off sudden bouts of diarrhea. 2. Can high blood pressure be related to the function of islet cells – has anyone developed high blood pressure several years after pancreatic surgery? 3. Does anyone here have issues with anxiety as a result of these conditions (I suspect the answer is "yes", if so, what are your thoughts on successfully managing anxiety?

We were fortunate in that when the initial diagnosis and surgery were done – he was still on our insurance. It may be that these questions can best be answered at the clinic and we will be exploring coverage now that he's on a marketplace plan.

@mcantr

Again, thank all who have responded. I've tried to come up with specific questions and I'm now going to throw these out for consideration. My son is completely Creon dependent – and has issues with regulating bowel movements. 1. Does anyone have any insights as to whether or not it is possible to fine tune dosages, or in any way head off sudden bouts of diarrhea. 2. Can high blood pressure be related to the function of islet cells – has anyone developed high blood pressure several years after pancreatic surgery? 3. Does anyone here have issues with anxiety as a result of these conditions (I suspect the answer is "yes", if so, what are your thoughts on successfully managing anxiety?

We were fortunate in that when the initial diagnosis and surgery were done – he was still on our insurance. It may be that these questions can best be answered at the clinic and we will be exploring coverage now that he's on a marketplace plan.

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@mcantr I also am dependent on Creon. What dose is your son on? My Creon is 24,000 units of Lipase, 76,000 units of Protease and 120,000 units of Amylase. I take 2 capsules with every meal. At first, I took only one with breakfast but had to increase it to 2. I have also started taking 1 capsule with my bedtime snack.

@marvinjsturing he is taking approximately the same amount of Creon as you are.

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