Total Pancreatectomy

Posted by Luckyone4321 @luckyone4321, Jan 25, 2020

Hello everyone! I am brand new to this site so please bear with me! I am a 31 year old female and here is my story and questions...in 2010 I had a benign tumor removed off of the tail of my pancreas without any problems, in 2017 I had a malignant tumor on the head of my pancreas and had to have a Whipple Procedure, and not even 6 months later the cancer had spread to the rest of my pancreas and I had Pancreatic Cancer. I didn't have time to do chemo or radiation, a total pancreatectomy was my only option. They removed my entire pancreas, gall bladder, spleen, some of my stomach, and some of my small intestine (Duodenum). Recovery wasn't easy, especially adapting to now being a Type 1 Diabetic and having to take pancreatic enzymes before eating anything just to be able to digest any food. I had several complications following the Whipple and Total Pancreatectomy (as well as removing other organs). I am coming up on two years post op and I feel like I am still struggling! I suffer from severe fatigue, nausea/vomiting (causing me to lose over 20 pounds), diarrhea, stomach pain, and uncontrollable blood sugars. I have been searching the internet for someone "like me!" I have found people who have had the TPAIT procedure or a Distal Pancreatectomy but not a Total Pancreatectomy due to Pancreatic Cancer. I stumbled upon this page and I am hoping someone can give me some insight on what I'm going through. Since my pancreatectomy, every single time I eat I get sick and it has affected all aspects of my life including my relationships and my job. I lost my job due to my current health condition and am fighting hard to get disability, spending most of my days in bed (which is hard having a young child). Anyway, I take Creon with all of my food and am about to have a Gastric Emptying Test done to check for Gastroparesis or Dumping Syndrome. Has anyone had a total pancreatectomy and struggled so bad after the surgery? If so, did you ever really get your life back or did your body eventually get used to digesting food this way and did the constant stomach pain ever stop? My surgeon made it sound like I would absolutely have issues for at least one year after the surgery and that Gastroparesis was very likely but since they removed some of my stomach and a specific valve...I feel like I would have the opposite and have Dumping Syndrome. My apologies for such a long post and for jumping all over the place. If anyone has any recommendations or suggestions to possibly improve my quality of life, that would be much appreciated. I am desperate and looking for answers or wanting to find someone who can at least relate. Thank you for all of your help!

Interested in more discussions like this? Go to the Pancreatic Cancer Support Group.

@kimber361

@luckyone4321, You're welcome. I know how difficult it is to find a doctor and/or gastroenterologist that's knowledgeable in patients who have had Total Pancreatectomies, Whipple Procedure surgeries and/or Distal Pancreatectomies. I changed gastroenterologists after I underwent the Whipple. Through many phone calls & inquiries, I finally found a knowledgeable gastroenterologist & am very happy with him! You may want to seek a second or third consult opinion until you find a good gastroenterologist.

I haven't tried Zenpep, but I have a friend who takes it. He told me it works a bit better for him than Creon. You should ask your doctor tomorrow about increasing your Zenpep dosage, as I'm sure it will help you. Keep us posted on your visit tomorrow, okay? I hope your visit goes well!💜

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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!

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@chemobile

I am a 22 month survivor after Whipple surgery at Jax Mayo. I also am a retired lawyer. When I was actively practicing law I represented a few clients in disability issues. It was my experience that Social Security Disability employees almost always denied a claim on first filing but almost always approved it on re-filing. While you and I are at the moment in remission, we still have many issues from the surgery, chemo and radiation,which are a direct result of the cancer. You might want to consult a social security disability attorney to review your case. In my day, the lawyer did not charge a fee unless he or she was successful in getting the benefit approved.
I hope and pray that you and I both continue in remission. With some adjustments we can continue with our lives.

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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!!!

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@luckyone4321

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!

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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.

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@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/

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@luckyone4321

I am going to be completely honest...I am having a hard time accepting my “new life” and accepting my limitations. My son keeps me on my feet which helps both my mind and body. I would love to be able to go for short walks (we live by a lake) and enjoy some physical activity but unfortunately every time I’ve tried, my blood sugar drops very low. I’ve tried eating slow burning carbs prior to the walk but I will still get extremely weak and need to stop and sit down. I have seizures quite often due to my low blood sugars even though I do have a CGM device (Dexcom) and a insulin pump. My doctors are still trying to figure out the right amount of insulin for certain times of the day to prevent lows. I did however just get a newer version of the Continuous Glucose Monitor (in my arm) and it automatically shuts off all insulin when it senses that my blood sugar is dropping! It’s amazing. But I still deal with the extreme fatigue/weakness and that I can’t seem to find a fix for. To cope with my stomach pain/discomfort I've tried over the counter medication like Tums and I take Zofran for nausea as well as andi-gas pills. I’ll use a heating pad or a weighted blanket, I’ve tried lying down as well as standing and it doesn’t seem to make a difference.
I hope I answered your question correctly! I am still mourning my old self and sometimes I find myself in sort of a “denial phase.” I am open to new ways to cope and manage both mentally and physically! I appreciate your response and I am so happy I found this page! Thanks again!

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@ 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.

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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 !!

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@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.

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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.

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@isaall888

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.

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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?

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@isaall888

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.

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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.

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