Life after Pancreatectomy: How was your recovery?
Hi, I am new to this forum. I am seeking help and support as my sister just underwent pancreatectomy. I like to connect with patients who have similar surgery and am wondering if I can get help in how to care for her . Thx!!
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Hi @huilim, welcome to the Pancreatic Cancer group. I read in another message that you posted that your sister had her surgery at Mayo Clinic with Dr. Truty. She is in good hands.
I'm tagging fellow members like @beachdog @drileymn @buckslayer @luckyone4321 @marvinjsturing @chemobile @kjrita @kay2 @wrolsen @charliegolfrep @kamnorris2 who can share their experiences with pancreatectomy and recovery tips, either as a patient or a caregiver like yourself.
Huilim, are you with your sister now? How is she doing? How are you doing?
Hi Colleen, sorry if I have duplicated my question. I had messaged you on the private message before I saw your reply here. My sister is still in Rochester… into her 4th month there 😔. She was discharged from the Mayo after a gruelling 42 days post op. I will be flying there to look after her in two weeks (I live in Canada ) and my sister lives in Singapore . she hopes to go back to Singapore early March. It has been a very tough recovery.. she is vomiting a lot and can’t keep anything down.. she had fluid in lungs, infection, internal bleeding.. etc. But I hope that is the worst of it and she is finally out of the woods. We are praying hard! Her spirits were very dampened but is much better now that she is out of hospital and back to the apartment across from Mayo. The most challenging part of all this is nutrition. We don’t know how to manage her food in take without having her vomit. What can she eat and not eat? Sigh…
I was placed on TPN (Total Parenteral Nutrition) after my surgery ( I had a modified Whipple and was unable to keep anything down for a while). I'm eating a bit now but still on TPN which means I receive nutrition through a port in my arm. Are they trying to manage her symptoms with medication?
Nutrition is difficult. You've probably heard all the typical advice, small portions, eat frequently, high proteins, etc. Does she have prescriptions to keep bile under control.? My wife has used cholestyramine since surgery. She also uses Creon to compensate for pancreatic insufficiency. Good luck and God bless.
Hi Huilum, how is your sister doing? Has she found some nutrition solutions, foods she can eat, etc.?
@huilim, you have to read this post from @bb21 https://connect.mayoclinic.org/comment/678516/
She offers lovely tips and advice as someone living with pancreatic cancer, some about nutrition and more. @bb12, any thoughts for Huilim?
Hi huilium, I underwent a whipple surgery in 2012. I was discharged after 28 days post op and went home on a TPN for several months. Returning to solid food was a long slow process and I lost over 100 lbs during that time. It was probably 6 to 8 months before I could return to what I would consider a normal diet with the help of Creon which I still use to this day. I know it can be a rough road but things will return to a new normal.
Hi Colleen, thank you for checking in! She is doing much better.. nausea is somewhat controlled but still having a lot of lose stools daily. She has lost weight since op. Is there anyone that you can connect me with similar situation as her? Total pancreatectomy.. life after that.. nutritional advice… thx so much Colleen!!
Hi Im 63 and I had the Top part of my Pancreas Removed as it was Cancerous 2021 its been a year and they said i may have only 6 mth …… I go back for scans to see if it has come back every 90 dy….It has Been straight up HELL as now I have Sugar Diabities.All this is New for me and It had me thinking that ANY time I could be leaving Here every time i have to take a creon pill to say the least.Especialy when using the bathroom….And the Dizzy spells as well and Cant gain weight. At times i Just wanted this to be over with YOU KNOW leave here this is exstremly difficult to deal with when you are poor and i HAVE TO EAT WHAT I CAN to survive I mean Just that AND im lucky that I found a place to stay(a room that takes most of my SSI AND NO BATH or shower just a sink.).I m Glad i GOT out of that Nursing Center They intialy are Not a good Group of People but there were a frew that geinuinly cared….In this end i wonder Just how long I got to be here i realy dont care to Much Either way its going to be continue Hell.But my Dr is the One who got me thinking I should live and thats gave me Strenght to Try to keep going on…While i was in the Hospital I caught Covid along with the surgery .One Night WHILE ON THE PAIN pills i CALLED TO THE Nurse who was walking past my Room, you know scared and alone thinking I would die with (that dam tub in my mouth) just needed a little asurance (You Know) that I would be alright After the Surgry,She kept going as if she did not hear me but i know she did because she look right at me,as she move on down the hall i heard her tell another Nurse in a somewhat whisper " not going in there ,im dont know what to say to him and he is dying" More than any fear through out this entire exsperience i had never Knew such aloness and saddnes and fear at one time.So i guess you all can say Im lucky to be here Now! I wish you all WELL keep up the fight especial If you are fortunate to have those that Love you then I would say that Fight is worth it! Peace
I am so sorry for your experiences. What information have you been given about the tumor they removed and the genetic typing? If you feel you have been put on the sidelines, speak up. Tell your oncologist and ask to speak with a patient advocate. Many of us are dealing with Creon needs and diabetes but you can handle all that. You definitely need someone on your side. Having family and friends close to me and supporting me in any way they can helps me to keep fighting my terminal diagnosis 6 months post-surgery. My oncologist will not say what she thinks my timeline is because she thinks I should be focusing on life not death. Get things in order for you but Live. You need to and deserve to enjoy whatever life is left. Find a support group with whom you can talk. Use this group as one option. People are usually good at responding.