What's recovery after distal pancreatectomy and splenectomy like?

Hi there-
I am sorry to hear that you are experiencing stomach discomfort. It very well could be that the scar tissue is sticking to the incision site. If your surgeon is not onboard with looking into that, I would check with a cosmetic surgeon that specializes in abdominal surgery. My cosmetic surgeon is the one who actually ended up fixing the issue and I am so much better and can actually lay flat in bed without pain. She indicated that my scar tissue from the pancreatic surgery was actually quite deep. I hope you get relief. I don't know where you live but if you are in the Twin Cities, I can recommend my surgeon to you if you private message me. As for the digestion, I also still have issues with that part. Just last week my doctor informed me that I have low hemoglobin and iron which she believes is due to my surgery, so I am receiving IV iron infusions for the next 4 weeks. Rest assured it's not uncommon to have GI issues after surgery. The way my doctor explained it was this: "because you have lost the gallbladder, spleen and pancreas which all kick in bile when you eat to help with the digestion process, most people that have undergone the surgery you have, will have GI issues." You may want to ask about taking enzymes (can be oral pills or IV infusion) to help with your discomfort. Enzymes can be tricky as there are different types, so be sure to check with your physician. Daily I currently take (2) Colace- which you can get over the counter, and MiraLAX with my coffee, which seems to help somewhat. I am not sure what your circumstances are, but I am a huge advocate for speaking up with my doctor. If you don't feel as though you your doctor is taking your concerns seriously, I would suggest looking into changing to one that will listen to your concerns and take action. It's your body and you have already been to hell and back (worry, surgery, healing ect. ). Purely my thoughts of course. You got this! Stay encouraged and let me know if I can help further. Please know in your heart that I care and would love to keep in touch.

Warmest Regards,
Sherry

I had a distal pancreatectomy/splenectomy for a pancreatic neuroendocrine tumor in October 2022. I'm glad to find a person who had that specific thing also, as it seems hard to find a lot online about that (especially with a neuroendocrine tumor, which apparently is rare?).
I'm in my fourth month of recovery and doing well except I do have some discomfort in my stomach, and wonder if it is due to a lot of scar tissue. My surgeon is kind of lax about giving me details, which is frustrating. I wonder if there's any medication I should be taking to improve digestion and bowel issues also. It's all new and confusing! I hope you're doing well.

What actually is the gray area .Is it biopsies aren't testing cancerous??I believe my husband maybe in the gray area as well.He is unable to get MRI because of his pacemaker is hindering his diagnosis.God bless !!Interested in your case .

Hello Sherry,
Thank you for sharing! I am sorry you are having issues with lying flat! Why is that?

First of all, why did you have this procedure. Was it 100% necessary? Did they biopsy your tumor and was it cancerous?

My case is in the "grey" area and i am wondering if I really want to go through this major surgery. What was the most challenging part of your recovery and how soon afterwards did you feel 100% back to normal. Also, did you have draining tubes for an extended period of time?

I would so love to connect with you via email if at all possible for some additional questions if you would be open to added sharing.

Thank you kindly,
Kate Coleman

If I may insert my own experience with my distal pancreatectomy and splenectomy in July 2022. It was explained to me prior to surgery that they would try to save the spleen, but because it shares so many blood vessels with the pancreas, it is more efficient to remove the spleen. Without the spleen, I just need to keep up with vaccines to avoid certain infections, such as meningitis. My procedure was performed robot assisted, mostly laparoscopic, with five small incisions, and one slightly larger. No complications. After surgery for the IPMN, I did have stage 1b pancreatic cancer and am finishing chemo soon. But I feel that the initial surgery went very well. Let me know if you have any questions. Best wishes.

@skkirby
Hi, my wife is going in March 1st for this surgery. She was diagnosed April 2022, has completed 9 cycles of chemo, and the doctors are ready to try to remove as much is left. She also is having lesions removed (20 maybe) on liver, and remove gall bladder as it gets all clogged up from all the chemo the past few months. Questions to you are, I've read if possible, if the spleen can be saved to be very beneficial long term, I understand if the cancer is on the spleen there may be no choice. Were you explained that before the surgery or not? Just trying to get questions ready for the surgeon before pre op appointment next week for her surgery. Was your surgery open surgery or laporadic? Any and all info you can share either questions to the surgeon or if you had to do the surgery again, and basic advice?

Thank you!

There is a difference, but that's above my pay-grade 🙂
- Comparison of clinicopathologic characteristics and survival outcomes between invasive IPMN and invasive MCN: A population-based analysis https://www.frontiersin.org/articles/10.3389/fonc.2022.899761/full#:~:text=IPMN%20is%20a%20mucin%2Dproducing,IPMN%20and%20MCN%20(7).
- Pancreatic Cystic Neoplasms: Different Types, Different Management, New Guidelines https://www.karger.com/Article/FullText/489641

Thanks Colleen. I have been told mine is IPMN intraductul pappilary mucinous neoplasm. Wonder if they are one and the same?

@skiball and @shezza51, I believe when @blw77 said "...and watching an MNC slowly but steadily grow,..." MNC refers to Mucinous Nonneoplastic Cyst of the pancreas.