type 3c just removed 2/3 of pancreas (body+tail) and spleen

[wendy2022]

Hi,
My mom just got out of the hospital after undergoing a more than 5 hours of operation, removing 2/3 of her pancreas (tail and portion of body) as well as her spleen. Although the doctor had cautioned us regarding diabetes as a side effect of the operation, we are overwhelmed by how much worse my mom's health condition has gotten. (We thought she would have gotten better instead of worse following her operation!) After researching through the web, we are made aware of her condition being type 3c diabetes and how it contributes to her now cognitive impairment (she was always very sharp, so it's sad to see her experiencing confusion right now, and it's scary for her to experience that.)

We would appreciate any pointer where we can get more resources regarding caring for type 3c patients. Will the condition get better (she just had her operation 4 weeks ago)? She's eating very little, afraid of getting her blood sugar level higher. She's tired all the time. We don't know what to do. Any help would be appreciated. Thanks!

 

[eggyg]

Hi @wendy2022.
Sorry you have to be here. I’ve had the exact same op, distal pancreatectomy and splenectomy, Almost 15 years ago. Firstly I want to say, type 3c is different to type 3 which is linked to dementia and is nothing to do with the op your mum and I have had.
It is a huge op and I spent three weeks in hospital and was very unwell afterwards. I was only 47, I don’t know how old your mum is but a big op like that is a massive shock to the system and she will need lots of care and attention to help her get over it. Has your mother been diagnosed with diabetes yet? I didn’t become diabetic for another three years, it isn’t inevitable when you have a partial removal. It was another three years before I was put onto insulin, I coped with oral meds until then, along with cutting down on my carbs. But inevitably, insulin will be required in the future. Type 3c ( the C is important to differentiate), should be treated like a type 1 and if your mum does become diabetic, she will have all the same support as a type 1. In the meantime, any problems talk to your mother’s GP who should be able to answer any questions regarding your mum’s recovery. It’ll take months I’m afraid, especially if she was very unwell before the op and depending on her age. Any questions I’m quite happy to help. Elaine.

I’ve edited this to say, unfortunately, lots of GPs/health professionals don’t know anything or very little about Type 3c. If you head to the search facility at the top of the page, type in 3c and you’ll find some info on there. There’s a handful of us on here. @zippyjojo has had the same op too. @Proud to be erratic has had a total pancreatectomy. We’re all here to help.

 

[Docb]

Hi @wendy2022 and welcome to the forum. I see you are located in Hawaii. Although this forum is UK based, we welcome overseas members, after all diabetes is diabetes no matter where you live. What is different is that health care systems vary widely round the world and you might need to adapt any thoughts from members to suit how things work where you live.

I cannot offer anything practical, major surgery on the pancreas is way outside my experience, but I can offer you and your mom all my good wishes through what might be a protracted recovery.

 

[wendy2022]

Hi @wendy2022.
Sorry you have to be here. I’ve had the exact same op, distal pancreatectomy and splenectomy, Almost 15 years ago. Firstly I want to say, type 3c is different to type 3 which is linked to dementia and is nothing to do with the op your mum and I have had.
It is a huge op and I spent three weeks in hospital and was very unwell afterwards. I was only 47, I don’t know how old your mum is but a big op like that is a massive shock to the system and she will need lots of care and attention to help her get over it. Has your mother been diagnosed with diabetes yet? I didn’t become diabetic for another three years, it isn’t inevitable when you have a partial removal. It was another three years before I was put onto insulin, I coped with oral meds until then, along with cutting down on my carbs. But inevitably, insulin will be required in the future. Type 3c ( the C is important to differentiate), should be treated like a type 1 and if your mum does become diabetic, she will have all the same support as a type 1. In the meantime, any problems talk to your mother’s GP who should be able to answer any questions regarding your mum’s recovery. It’ll take months I’m afraid, especially if she was very unwell before the op and depending on her age. Any questions I’m quite happy to help. Elaine.

I’ve edited this to say, unfortunately, lots of GPs/health professionals don’t know anything or very little about Type 3c. If you head to the search facility at the top of the page, type in 3c and you’ll find some info on there. There’s a handful of us on here. @zippyjojo has had the same op too. @Proud to be erratic has had a total pancreatectomy. We’re all here to help.

Thank you so much for your reply. My mom was prediabetic before the operation. She is on jardiance and metformin right now. She's eating less than half of her normal amount, 3 meals a day, and her glucose level pre-meal is about 150 plus/minus. As she's eating too little, losing weight, we've encouraged her to eat snack in between. She tried eating bread recently for snack, and her glucose level pre-meal has jumped to 180-190 level. I'm interested in knowing how everyone manage their diet while keeping glucose level at a desirable level. Also, she gets fatigued easily. I read that exercising and keeping oneself active is important. Should we ask her to do things on her own (prepare meal for example) even when she gets fatigued easily?

Also thank you so much for pointing out the difference between type 3c and type 3. What's scary about my mom is that she begins to exhibit cognitive impairment after the operation. She is constantly asking us what she should do, how to do, how long to eat, how long to sleep. My mom is 80+ years old. She was able to keep a diary of what she does everyday, but now she has trouble writing things down, or when she does, she has trouble reading them out loud to us. Is this related to insulin resistance/glucose level, I wonder? Sorry, so much has changed, and these changes have overwhelmed both my mom and us. Our doctor seems confused about her cognitive impairment symptoms, and asked us to seek help from a neurologist, which we will do next.

 

[wendy2022]

Hi @wendy2022 and welcome to the forum. I see you are located in Hawaii. Although this forum is UK based, we welcome overseas members, after all diabetes is diabetes no matter where you live. What is different is that health care systems vary widely round the world and you might need to adapt any thoughts from members to suit how things work where you live.

I cannot offer anything practical, major surgery on the pancreas is way outside my experience, but I can offer you and your mom all my good wishes through what might be a protracted recovery.

Thank you so much for your wishes. I've looked frantically for support and answers for my mom's situation, and this is the only resource I've found, even though we don't live in the UK. Thanks again for your support.

 

[GatorGal]

Hi - I am type 3c as well from having a good portion of my pancreas removed in 2016. I didn't really have any cognitive issues afterward, but I was 46 when I had procedure. I would suggest that in addition to a neurologist you consider seeing an endocrinologist to help with the diabetes management. She may need to be on insulin and an endocrinologist can do the appropriate work up. I am in the USA as well, and, from my experience, they don't recognize type 3c, (the medical records will only be coded as type 1 or type 2- and will treat her as such). My surgeon referred to the diabetes as "surgical diabetes" (as it was caused by the surgery removing the pancreas), rather than calling it type 3c.

I do wish you and your mother luck and hope you can get some answers and improved treatment. For me this forum has been an excellent resource - I haven't been able to find anything similar elsewhere.

 

[wendy2022]

Hi - I am type 3c as well from having a good portion of my pancreas removed in 2016. I didn't really have any cognitive issues afterward, but I was 46 when I had procedure. I would suggest that in addition to a neurologist you consider seeing an endocrinologist to help with the diabetes management. She may need to be on insulin and an endocrinologist can do the appropriate work up. I am in the USA as well, and, from my experience, they don't recognize type 3c, (the medical records will only be coded as type 1 or type 2- and will treat her as such). My surgeon referred to the diabetes as "surgical diabetes" (as it was caused by the surgery removing the pancreas), rather than calling it type 3c.

I do wish you and your mother luck and hope you can get some answers and improved treatment. For me this forum has been an excellent resource - I haven't been able to find anything similar elsewhere.

Thank you very much for sharing your experience and your wishes. That really helps a lot.

 

[everydayupsanddowns]

Welcome to the forum @wendy2022

Hope you find it a supportive and reassuring place to be able to ask questions and hear about the experiences of others who may have faced some of the same challenges as your Mum.

I would imagine 80 is a pretty tricky time to be asked to make these kinds of changes, and I wonder if some of your Mum’s uncertainty and questioning is just a natural part of what can be a fairly overwhelming transition at any age. It can feel like there isn’t any solid ground any more, and even the simplest things can be accompanied by feeling of anxiety about whether or not this or that choice is ‘right’.

Feel free to ask away with any and all questions that you have. Nothing will be considered too obvious or ‘silly’.

 

[wendy2022]

Thank you so much for your reply. Yes, also hearing other's experience, I have to reassess whether my mom is just overwhelmed (perhaps fatigue and malnutrition also attributes to all of this). For now, there is only one priority, which is make sure she eats in more frequent small meals, examine how the food is digested, and make sure she tries to keep up an active life as much as she can. Will share back what happens. Thanks!