Total Pancreatectomy

Posted by Luckyone4321 @luckyone4321, Jan 25 11:26pm

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!

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/

Liked by Luckyone4321

REPLY

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?

Liked by Luckyone4321

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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!💜

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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.

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@kimber361

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!💜

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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!

Liked by kjrita, kimber361

REPLY
@marvinjsturing

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.

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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 🙂

Liked by kjrita

REPLY
@marciakaye

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/

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

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@kanaazpereira

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?

Jump to this post

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!

REPLY
@luckyone4321

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!

Jump to this post

@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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@luckyone4321

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 🙂

Jump to this post

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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@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!💜

Jump to this post

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.

Jump to this post

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!!!

Liked by kjrita

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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!

Jump to this post

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.

Liked by kjrita

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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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