Total Pancreatectomy

Hello. Today is my 4-year anniversary of my pancreatectomy, removal of spleen and part of my stomach, along the first part of my intestine or the duodenum. It does get easier, but it took me a year of recovery to almost be back to normal in my digestion. After this surgery, I was in the hospital for 19 days. I had a feeding tube in my stomach. I was also receiving TPN or Total Parenteral Nutrition through my port during my hospital stay. I wasn't able to eat much, so this was my option for getting nutrition. I had to go home with my feeding tube and the TPN. They wanted me to eat 1200 calories a day before suspending this protocol. It was really difficult to eat because my insides were healing, and digestion hurt. I had a hard time eating. I definitely started losing a lot of weight. I didn't want to eat because it hurt every time I ate. I would recommend doing the best she can with eating, and I recommend medical marijuana which wasn't available when I was going through this. I had a friend that got some local honey that was infused with it, which definitely eased my pain, and I was able to eat more and start feeling normal. Maybe your sister would be willing to try some gummies?
I also would recommend that she makes sure she pays attention to the amount enzymes she is taking. That is a process to figure out. It's different for everyone. Now, I know how many I have to take when I eat, but I had to take the first amount recommended: 2-3 with meals. I now take 5 with meals and 7 if it is fatty food. I take 2-3 with snacks, but again it depends on when I last ate. The cramping and diarrhea are more than likely due to the fact that she is not taking enough enzymes. However, it also takes a while for the organs to heal. She should gradually start feeling better. It is a slow road it seems. On the other hand, I was grateful to be alive and get a second chance on life. Let me know if you have any other questions, I might be able to answer. It is wonderful that you are asking questions to help her through.

Hello @isaall888 and welcome to Mayo Clinic Connect. I am very sorry to read about your sister's diagnosis. How wonderful you are such a great advocate and support for her to join Connect.

You will notice that I have moved your post into an existing discussion on this same topic, which you can find here:
- Total Pancreatectomy: https://connect.mayoclinic.org/discussion/total-pancreatectomy/

I'd like to bring in members @mariouk @kjrita and @luckyone4321 who have been part of this discussion to see if they can offer you some support for your sister.

What was the anticipated recovery time shared with your sister by her surgeon?

My sister laure was diagnosed with pancreatic cancer stage2. She went through chemo then had surgery. They removed pancreas spleen and 2/3 of stomach. Some blood vessels had to be reconstructed since tumor was all around celiac artery and other blood vessel. She is now struggling with the new life. Diabetes type1, uncontrollable sugars, diarrhea as soon as you eat something, throwing up, being tired all the time. It's only been a month since the surgery so we are hopeful it will get better. She started having lots of lower abdominal and back cramping. Anyone experiencing such symptoms. Thank you all of you for sharing your journey. As soon as my sister feels better, i will have her joint the group. I am trying to understand as much as possible so I can help her deal with this struggle. Thank you.

@luckyone4321 I am curious to see how you are going and I do hope you have found a good balance! I am a candidate for the same surgery but I am lucky as i dont have cancer yet and it is a precaution action.

Hey all I am new here and this chat was recommend by the moderator @colleenyoung !

You can find my story here
https://connect.mayoclinic.org/discussion/six-non-invasive-ipmns/
I might be lucky and my main concern atm is the surgery, recovery and life expectancies when one has no pancreas ! I do appreciate it’s not an easy journey, far from it but with the right support , which I am so lucky to have in my wife and daughter (she is only 7) ! I would love to connect and get to know you and be pen friends like the old days !!

@ luckyone4321 I feel yah. It sounds like you got one answer though with your Dexcom stopping the insulin. That's good. I have a G6. I yet haven't made a commitment to an insulin pump...kind of because I was not surrendering to this whole thing either. My A1C went up recently because I didn't want to deal with it. I was doing just enough to get by, so to speak. Now I am getting it under control...one day at a time, right? I am not fond of changing too many things at one time. Then, I don't know what is causing the symptom. You are now in my prayers.

@luckyone4321 - Hello. I am not sure how I missed this post, but I found it this time. My surgery was 10/23/18 - my organs removed I am very much like you in what was removed from my body. I would be happy to talk further and answer questions. It was a very difficult recovery with having the pancreas, duodenum, and glands removed. I too had to adapt to now being type 1 and never was type 2. I also take enzymes. It took time to determine how many to take with each meal and type of food. Fatty food...I increase about +3 pills, but it is variable by the person. I haven't been able to eat some raw veggies because the fiber makes it exceedingly painful digest..not worth it. I can't eat lentils either...I suspect same issue. I stick to mostly cooked veggies I also had an episode with stress yesterday, trying to do things at work as I used to, it caused me to throw up and have what felt like a big knot in my intestine. I decided I have to slow down and be at peace. Here's my story. I was glad I was able to get it out there so I can encourage people. Please let me know if you have any questions. https://sharing.mayoclinic.org/2020/02/05/aggressive-approach-to-pancreatic-cancer-yields-outstanding-outcome/

Hi @luckyone4321, how are you doing? I hope you were able to reschedule an appointment with your doctor in the meantime. Did you get your questions answered? Would love to get an update.

Thank you so much. I’m going to look up some disability attorneys right now! I do know some just take the percentage if you win and I feel like that type of attorney may be better than this “free” one that was offered to me through the hospital I had my surgery at. He doesn’t seem to care if I win or lose and he doesn’t communicate with me or ever return my phone calls. So I think it’s time for a new one! I hope you’re doing okay and I’m going to keep you in my prayers! We got this!!!

I went to my doctor appointment today with a full list of questions and concerns and I get there and they tell me he had to do a operation and that they tried to call me to reschedule it but I never had a missed call! And now that doctor can’t get me in until March. I’m wondering if I should look into a different doctor? I was looking forward to maybe getting some answers today but until then I will increase my Creon and see if that helps!