Total Pancreatectomy

There is a group called Sky Foundation located in Bloomfield Hills, MI. The founder of that organization is a thriver of pancreatic cancer for the last 15+ years. She's a busy person but is willing to talk to others about the disease. She helped us when my husband was first diagnosed. I encourage you to reach out to her. https://skyfoundationinc.org/

I’m so glad to ‘meet you’ @luckyone4321 – welcome to Mayo Clinic Connect. I also wanted to let you know that I really appreciate the details you’ve shared in your your detailed post – being specific definitely helps bring more people into the conversation:)

@bszychow @sandras @2011panc @steve_b @marvinjsturing @moo1 @kimber361 @mcantr @beachgirl23 @susan2018 @ahtaylor, I’d like to invite you to share your insights about pancreatic surgery, pancreatectomy, transplant, as I’m confident that your insights will help @luckyone4321.

Also, take a look at this discussion started by @marvinjsturing:
– Celebrating Life after Pancreatic Cancer! https://connect.mayoclinic.org/discussion/celebrating-life-after-pancreatic-cancer/

@luckyone4321, you are not alone in your recovery struggles; could you share a bit more about how you’re managing or coping at present? Have you found anything that helps?

It's unlikely that you're experiencing gastroparesis if the surgeon removed a portion of your stomach & pyloric valve (at the base of the stomach).

Have you noticed anything odd or different about your stools (i.e. diarrhea which consists of: smelly/odorous, floating, pale colored, oily/greasy, stools that stick to the toilet bowl and/or stools that are difficult to flush)? If so, then you're experiencing Dumping Syndrome. You should discuss with your gastroenterologist and/or pancreatic specialist about increasing your dosage of Creon. It sounds to me that you're not taking enough with your meals/snacks. For example: I've been taking Creon for the past 16 years & I take 4 24,000 unit capsules after a couple bites of food & 2 to 3 capsules with each snack, depending upon the size & fat content of the snack. Everyone is different on finding a dosage that will work for them individually. So, it's a matter of trial & error until you find what works for you. An additional thing you should request from your gastroenterologist and/or pancreatic specialist is a prescription for Cholestyramine Powder packets. Mix a packet with 1/4 cup of water or orange juice & drink it immediately before each meal. This used in conjunction with Creon will help bind & form your stools. Best wishes on your continued recovery!💜

There is also a Facebook group called Whipple Surgery Survivor Group. I sure you would find someone like you in that group.

I had my Whipple 5 1/2 years ago. The surgeon did not remove my entire pancreas, but the part that was left was so bad that it was not reattached to my digestive system. I asked the surgeon why he didn't remove the entire pancreas. He told me that my surgery had already lasted 8 1/2 hours and he didn't want to take the time to remove the rest of it.

I had been a Type II diabetic for 5 years before I was diagnosed with pancreatic cancer. I had learned to control my diabetes with exercise and diet. The only real difference now that I am a Type I diabetic is that I now use insulin as well as watching what I eat (along with Creon).

I also have to deal with fatigue. I have not been affected by nausea and sickness.

I was able to get on Social Security Disability. My understanding is that pancreatic cancer just about guarantees that you will qualify for disability. I filled out the application online. It may take some time, but don't become discouraged and give up trying.

I hope that you will find some answers with testing that you have scheduled.

Thank you so much for responding! My stools vary but sometimes they are very oily with diarrhea and it feels like I do need more Creon. My GI Specialist let me try “Zenpep” last month and he had me stop the Creon at once and replace it with the Zenpep. I was extremely sick for 3-4 days and I decided to go back on the Creon. He switched me because I think the Creon upsets my stomach often. I actually have an appointment tomorrow with my GI and I will bring up the powder packets too. I am open to anything! And I believe you’re right about it not being Gastroparesis since the Pyloric Valve was removed. My doctor didn’t seem too educated on people who had a total pancreatectomy and removal of the duodenum. I’m hoping I’m wrong and that tomorrow goes well! Thank you again for your reply!

Thank you for responding! It helps to not feel so alone throughout this! I’m happy you were approved for disability! They denied me my first time and said I should be able to work while seated (even though I lost my job because I had three seizures due to low blood sugar). Unfortunately I applied for disability after my surgery so I’m in remission right now so they won’t approve me under having pancreatic cancer because I’m in remission. It’s beyond frustrating. I am going to try introducing small and easy exercises to my daily routine to see if that helps, typically even sweeping my kitchen will make my sugar drop (no matter how I eat beforehand) and my fatigue/weakness takes over and I have to sit down. I try not to complain but I definitely miss my old life and my old body but people like you that show me it is possible to live a fulfilling life, keeps me going! So thank you again 🙂

Wow! Thank you so much! I will look into it! 🙂

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!

@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!💜

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.