Total Pancreatectomy: What can I expect?

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!

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 there,
I would be so so happy to speak with you about your journey with this horrible surgery.

Hi, @lake3031 - welcome to Mayo Clinic Connect. Sounds like you've had some significant surgery. You also mentioned it was horrible. Will you share more about how you came to have a pancreatectomy, and why you note it was horrible? Was there anything that helped you through it that you'd recommend?

I am having a total pancreatotomy in the 2 weeks. I do not see any information here from others.
Is there another thread?

Also, I am looking for anyone that is using the Omnipod with the Libra CGM for insullin management,

Much appreciation.

T

Thanks for the reply!

It's way too long to say over text/message board, but ill try and give a brief synopsis. It all started July 27th 2016. I couldn't sleep at all and was in SERIOUS pain. Ended up having to go to hospital in the early morning hours bc it didn't subside at all. I was admitted and within 18 hours, I was in ICU, on life support, and in a medically induced coma. Doctors were literally betting how long I would stay alive before I passed (This part wasn't a joke, they seriously wore my wife said).

Made it through that and then spent the next 4 years living in hospitals from NJ, to PA, and Columbia. I eventually got a transplant at Columbia for an islet Cell Transplant. They also removed my entire spleen, pancreas, gallbladder, duodenum, 60% of my stomach, and had a wedge section.

Had 8 different feeding tubes, in and out of hospitals, multiple picc lines for tpn, fluids, infusions, coding twice on the OR table and had to be revived. Been on a vent 2 more times after my first time while in the coma. I'm now a brittle diabetic bc of not having a pancreas at all. Further, I can't get an actual pancreas put back in and have them completely rearrange all my internal "plumbing" again, to make everything work again as it would for every other human. I have been on the pancreas transplant list, but as "inactive" due to my respiratory issues (respiratory system failed twice) and mainly due to the 24/7 vomiting on an every day basis. Each day I vomit a minimum of 10 times, and up to over 25 times daily. So, I will not be able to keep the mandatory daily immune suppressants down for a foreign pancreas. I also am a rare match, and the wait is approx 2 years at the fastest.

My now brittle diabetes, lupas, and autoimmune issues are attacking my organs at an unbelievably fast pace. My doctors are saying my body won't make it (My endo said verbatim, "We're very sorry to have to say this, but you are already past the point of no return"), a side note, who the hell words that kind of information/message!?!? My wife and I were like what in the world?

So, I'm already pretty much a person with very limited mobility, malnourished bc I have been throwing up for the last 18 months, and no one can find out why. So in the event I get a miracle and find a pancreas match, I still can't get it bc I throw up everything and won't be able to get my immunosuppressants down for the foreign pancreas.

I've also had two more shoulder surgeries (now up to 4 surgeries on this right shoulder) before all this pancreas, etc. happen when I was fighting. Had an acl done for 2nd time. It's now torn again, along with lcl, mcl, and lateral meniscus. I have 7 herniations in my thoracic spine, 3 in my cervical, 1 in my lumbar, need another ankle surgery, a hip replacement, and am going on Wednesday to see how we are going to handle this next shoulder surgery.

There's more, but that should be enough to give you an idea of where I was for the last 9 year's, and what I am still currently managing. We have been talking about my end of life and I'm trying to get everything in line for my cremation, all my finances, belongings, etc. I just don't know how to keep waking up and fight an endless battle that no doctor has an answers on how to help my post surgery complications.

Hello, I hope your surgery was a success. Do you have a handle on the insulin management? I've had this done alone with other organs removed, so maybe I can be of some help. Just let me know

Ditto to what Oregonian said. Since my illness started in 2022 I've had a few people say they admire my attitude as far as strength and attitude. You my friend are extraordinary! I first saw you were a 8 year survivor! Then reading further I see that it's been a real fight for you and I'm so sorry to hear of your struggles. So fir you to be able to take time out of your schedule and offer your experience as help is nothing short of amazing to me and is what makes this forum the invaluable tool that it is. I wish you well, sir.