Total Pancreatectomy: What can I expect?

Again, thank all who have responded. I've tried to come up with specific questions and I'm now going to throw these out for consideration. My son is completely Creon dependent - and has issues with regulating bowel movements. 1. Does anyone have any insights as to whether or not it is possible to fine tune dosages, or in any way head off sudden bouts of diarrhea. 2. Can high blood pressure be related to the function of islet cells - has anyone developed high blood pressure several years after pancreatic surgery? 3. Does anyone here have issues with anxiety as a result of these conditions (I suspect the answer is "yes", if so, what are your thoughts on successfully managing anxiety?

We were fortunate in that when the initial diagnosis and surgery were done - he was still on our insurance. It may be that these questions can best be answered at the clinic and we will be exploring coverage now that he's on a marketplace plan.

@mcantr I also am dependent on Creon. What dose is your son on? My Creon is 24,000 units of Lipase, 76,000 units of Protease and 120,000 units of Amylase. I take 2 capsules with every meal. At first, I took only one with breakfast but had to increase it to 2. I have also started taking 1 capsule with my bedtime snack.

@marvinjsturing he is taking approximately the same amount of Creon as you are.

I have had a total pancreatectomy. I have Lynch Syndrome with a unique mutation. My father and two siblings with Lynch have died of pancreatic cancer. I have had prostate, colon and kidney cancer. My pancreas was tipping toward cancer so it was removed to prevent colon cancer. I am now five years post that last surgery. Other than periodic sepsis which is likely due to my missing spleen, I feel remarkably good. My diabetes is well controlled and my digestion is quite good. I am screened very aggressively. I’m 58 and enjoying life with my wife as we watch our teenagers grow up. I have not been well enough to return to work due to the sepsis. I would welcome a connection with others who have had a pancreatectomy.

My husband had similar surgery in April 2020. We were told chronic diahrrea and poor weight gain would be problems and this turned out to be true. Regular use of immodium 30 minutes before meals has helped but not consistently. As a result he is considering a colostomy just to get his life (freedom from the bathroom) back.

Hi
My sister also had a Totalpancreatectomy done in Dec 2021. she had her spleen, gallbladder, in part intestine taken out, It has been almost 2 years. She is still suffering from a lot of gas/bloat. She can hardly eat these days. She is on 1500 cal of TPN daily. Life is so miserable for her as she can’t eat but wants to eat. She cannot hold on her food and will throw up five minutes after she eats.🥹
Do you have similar side effects from the surgery? If so, how do you manage your symptoms? Your advice is greatly appreciate it.！

I'm so sorry to hear abou your sister's situation. My husband was also put on TPN eventually since we could no longer get food into his system the normal way - intestinal blockage about 3 years after surgery. He ended up with a G-tube so he could still "enjoy" eating but everything was then emptied back out via the tube instead of vomiting. Neither method is a quality way of living but we did what we could to try and carry on, and he got to eat whatever he wanted, which was one simple pleasure, at least. He is no longer with me after a 4 year battle with PC and treatment including chemo, radiation, whipple, and more, but there are miracles waiting out there so never give up hope. Prayers to your family 🙂

I’m sorry to hear that. Yes it is such a terrible disease. It’s a day by day thing we are taking.. she is suffering on a daily basis. I wish God will take her away and rid of this long endless torture🥹did your husband have gas and bloating while eating? My sister wants to eat but can’t get anything in without throwing all up again. She feels like a rock in the midst of her abdomen that is preventing her to eat.

You're right, prayers go from "God please save him" to "God please take him". It's no way to live and unbearable to watch the frustration and suffering. I would ask her doc about a g-tube - it allows the immediate release of gas and removal of food so there is at least some comfort while being able to actually eat food (a small creature comfort in a world of hurt). Of course she would have to have the the procedure to place it but it was pretty quick and easy for my husband. And this option would depend on her particular condition and if the risk/reward/duration is positive. I'm so sorry for her and anyone in this situation, including caregivers. Prayers to all.

I had distal pancreatomy benign condition done in 2001. Am non insulin diabetic taking crew but still
Having diarrhea issues what can I do differently