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!

@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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