New here, i am having total pancreatomy w/ islet cell transplant due to chronic pancreatitis

By Kimella Latest Reply 2014-08-05 15:58:12 -0500
Started 2013-05-08 09:43:40 -0500

In a week. Has anyone else here had this? Of course as soon as pancreas is removed I will be diabetic. I am terrified of the surgery, I had one diabetes edu class last week one on one with educators she was wonderful, but I failed miserably loading the syringe and even shooting the ball. My husband did great, but I failed. Diabetes terrifies me. I have cousins that are type 1,and friends both types. But honestly I know nothing about this disease. I have many other health problems. We are praying I will have plenty of healthy happy islet cells. But I've been showing signs of diabetes for a few years. Drs will keep me on insulin for 6 -12 months to let them get used to new home in the liver. I pray it's tempering, but am getting prepared mentally it will be permanent. I have severe anxiety and ptsd for a few different reasons, but mainly due to all the health problems I've had and drs that have put me through the so much, even telling me that most is in my head. Anyway, does anyone here have experience with this surgery? I know I have lots of questions about living with diabetes one being, I'm 88-95 lbs, how can I eat for diabetes yet gain weight???
Thanks, Kimella

8 replies

Anonymous 2014-08-05 15:58:12 -0500 Report

Hi everyone. I 've had surgery. I also had some serious complications. .My 3 month a1c came back at 5.4 the end o Dr my surgeon sent me to said great you can go off insulin. He also admittedly had no experience with my situation as my surgeon said he did. My pcp has been checking a1c every 3 months. It's slowly gone up. Last week it was 6.4. I am having so many problems post surgery. My recovery hasn't been easy. Some days are better then others. But lately I'm back to having more issues. My intestines are screwed for life. I have developed a mass where my ovary once was. Total hysterectomy in 01. I've also got issue with artery going to left kidney. None of these local Drs or surgeons will have Anything to do with me I'm too high risk. My pcp is wonderful. But he's not familiar with "our kind" I have lost trust with the surgeon who did my surgery. Last appt I had with him he osu much called me a liar told me to back off my enzymes and take only with fatty o r spicy meal and none with snacks. Because even though I am taking Miralax every morning and 4 senna every night I still can't go. He also diagnosed me with gastoparesis. Now if I go between going All the time to not going for days. I've had leaking. And most recently it's like my rectum is falling out. Today I had to actually push it back in. My weight stays between 88-94. But why th eating comes the pain I can feel it go through my system any advice please help. I someday s just want to quit. But obviously I can't. I just wish my surgeon didn't lead me on and leave me hanging.

lacat87 2013-06-18 14:39:18 -0500 Report

Hi Kimella, I'm just the person you need to talk with b/c I've had the exact same surgery over 3 yrs. ago. And I'm doing great! Need more information from you if you want my help. Here is my email address and number: small..843-408-7754. I was given your name and situation from jigsaw. By now you've had your sugery and hope you are doing well so far. It's a long recovery process and you can do this.

jigsaw 2013-06-18 10:05:58 -0500 Report

Hello Kimella,
There is another member that has been through the same surgery. If you like, I'll ask her to contact you.

stefanie1979 2013-06-18 04:10:24 -0500 Report

I just had this same exact surgery on February 1st this year. Please see my profile. I feel amazing. Ask me anything. I was #15 at university of health in Madison Wisconsin to have this surgery. This was the answer to save my life.

lacat87 2013-06-18 14:42:53 -0500 Report

Hi stefanie, I too have had this surgery and like that more people are coming to DC to help others with this surgery. I was number #25 at MUSC in Charleston, SC. I have a friend who told me about this surgery about 4 yrs. ago and she had hers 15 yrs ago and doing great! Thanks for replying to Kimella. We should compare notes!!

Ebony Faith
Ebony Faith 2013-05-12 10:02:06 -0500 Report

I had a total pancreactomy and auto islet cell transplant in 2007. Theres so much to tell you about it; the good and the not so good (but mostly good). It's too much to write out so I will message you my contact information and you can take it from there.

You are not alone. This a great community with a lot of great information.

lacat87 2013-06-18 14:44:55 -0500 Report

I agree Ebony Faith to remarks about this community. I've learned so much even tho I don't quite fit in the same categories but it's fantastic to finally find a couple of people who had same surgery as mine.

Fefe12 2013-05-11 03:30:33 -0500 Report

Im sorry to hear your news Im sure it is scarey. But Now you have to put the fear aside and take control of your diabetes. Its yours and no one elses. We are all different. Find a diabetic nutritionist as soon as possible. I loved mine. She took the fear out of so much and helped me get comfortable with my illness. Dont let fear take over. You will need your head to learn a new way of life. But no worries. I believe diabetics can be the healthiest ppl. I truely believe if everyone ate more like diabetics there would be fewer overweightt ppl in this country. Try the new insulin pens instead of a syringe. So much easier to deal with. This is your life now, embrace it. Your surgery will suck and you wont believe you will ever feel good again. But you will. It will take time. Its been a year and a half for me and Im just now beginning to feel like Im human again. But Im the healtheist Ive ever been. Ive only lost some of my pancreas not all of it so I cant tell you all you need to know. But I can tell you that you will survive.Do you have a choice? Do you want a choice? And you may even be better for it. Good health cant be taken for granted. Eat right, read all you can and dont let fear win. Get support from your loved ones and keep writing to us. We are on your side. Good luck and hugs.

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