Total Pancreatectomy: What can I expect?

Good Morning from humid NJ! People ask me how I have made it this far and not just went on hospice/palliative care. My answer is because of people like yourself to see my unfortunate hand in life but still somehow maintain some composure and always try to still put others first. It's just in my nature. Your words mean SO much to me. My prayers to you and all your loved ones. If you or anyone you know needs any help at all, I would be glad to lend a hand! 🙏

Can anyone tell me their experience with having a Total Distal Pancreatectomy and Splenectomy for chronic pancreatitis. I find lots of literature about having these surgeries for cancer, but I do not have cancer. I have acute on chronic attacks of pancreatitis that have become frequent. I do not tolerate stents as they cause iatrogenic pancreatitis. I have not kept any of the 8 or so stents as long as they were intended so the therapeutic effect does not occur. I cannot tolerate any of the medications, intolerance or allergy. and so now I am scheduled for surgery. I am curious about complications and what will my digestive health my look like going forward. Any suggestions, or questions I should ask that I am not currently thinking about or aware of.

Hi, @ericawiersfischer. I moved your post related to
total distal pancreatectomy and splenectomy here so you could talk to others who've chatted about pancreatectomy, etc. Please meet @tls @ahtaylor @marvinjsturing @steve_b @huilim @hopeful33250. Hoping they have suggestions of questions you should ask, and information about any complications they experienced and what your digestive health will look like going forward.

When is your surgery, ericawiersfischer? How are you feeling about it as the surgery approaches?

Surgery is end of August and I am feeling good about having this done as all other treatments have not been successful and I have been getting acute on chronic pancreatitis every 2-3 months with hospitalizations up to 5 days at a time. I am hoping this will be an end to Hotel Mayo visits.

@oregonian I cannot explain the huge significance and genuine gratitude I have from hearing such a thoughtful message! I'm tripping on my words, bc it means that much to me. I don't ever ever expect anyone to care and certainly not have empathy for me, but I would be lying if I didn't say how amazing it makes me hear for someone to see how much I truly have to endure. God bless you, and if there is anything at ALL I might be able to help with, please do reach out!! It would be my honor to share some trips and tricks I've taught myself (and even some doctor's) throughout this brutal excursion. Prayers & So many thanks!

@ericawiersfischer
Hey there! It seems we were/are in the same boat. Please do contact me and I would be more than happy to spend however much time you may need!

Prayers!

@lake3031 I
I had surgery last year; it will a year on Aug 28th. They started robotic assisted, went to laparoscopic and ended up opening me up because they did not realize my pancreas was so inflamed prior to surgery, and the number of stones were also unexpected. the stone did not stay in the body and tail as previously thought and they opened me up to save the head and neck by carefully removing the stones they found there. I ended up with a abscessed fistula about 1 month later, and things have been going ok. I did end up with SIBO in June, but motility issues are bound to be an issue every now and again. I feel so much relief from that cranky panky and am so glad I had the surgery.

@ericawiersfischer
Hey Friend 🧡~

I am so glad to hear that you have been able to attain what sounds like many steps down from the pain, discomfort, eating, mutiple/extended stays in hospitals, etc. that surely became a part of your everyday life. I'm so happy for you!! No one deserves to live within that quality of life. Did they end up having to remove your spleen too because of all the scar tissue built up from a dying pancreas? Also, to confirm, you did have a full pancreatectomy and not a whipple, right? Did they have to remove any of your small intestines and do a wedge section on your stomach? Forgive me if I don't quite recall exactly which surgery you had.

It's certainly not intentional but I do try and spend as much time as I can with many people, so hopefully they don't have to go through, and still have to go through in order to keep on being above ground.

Keep me posted, and if you'd like to link up and chat more, I have a Facebook profile for the sole purpose to use its marketplace. Just not a social media kind of guy. But I would be more than happy to hear from you, especially if you have any lingering questions and/or concerns. My FB is Ryan Bentley in Rockaway NJ. I believe my profile pic is of one of the red Ford Mustang's I have owned.

All Well Wishes from NJ!
Ryan

Hi Ryan, I have had much relief from surgery, thank you! I had a total distal pancreatectomy and splenectomy. My spleen was much more enlarged than scans ever showed, and it doesn't specifically say that it was portal thrombosis, when I asked the surgeon, he said no, but my GI says yes. So, whatever the reason it is no longer an issue because it is gone. The total distal is removal of the body and tail. They were able to spare the head and neck which they insist is much better, but I am now an insulin dependent diabetic due to surgery and I have some malabsorption issues, but I am not currently on PERT, I just take A LOT of supplements. I had an anatomical abnormality where my ducts were very narrow, and I also had an Ansa Loop- all congenital issues but very hard for all my docs to figure out for some reason. My intestines are intact as far I know and no wedge section of my stomach. I am one year out and hoping that this norm is my new norm, but who knows it can always change. I have had high WBC and platelets since surgery, which is explained from having splenectomy, so it has definitely made it harder when I am sick for them to realize it, because those indicators do not work.
Thank you!

@marvinjsturing talk to a nutritionist or your Dr. they can recommend some adjustment to address the diarrhea.