Life after removal of pancreas, gall bladder, spleen? Anyone out there please?

It is quite a while since you posted your question. Anyway on the 14th Dec 2016 I had my pancreas, spleen, gallbladder, duodenum amd and part of my stomach removed due to recurrent advanced Clear cell RCC in my pancreas. It was done a a very skilled transplant surgeon and her team at the PAH in Brisbane, Australia. The road to recovery was difficult and during those months I thought my god what have I done. Following the surgery I had 2 partially collapsed lungs and double phoemonia. In ITU I apparently have several severe hypos as they could not stabilise the diabetes. Then for a while I could not keep food down, continuous vomiting. I was discharged home (I did insist this). I kept on vomiting and was readmitted to Hospital after 2 weeks with dehydration, weight loss and very high ketones. A USS showed that I had accumulated free fluid in the abdomen which was putting pressure on my stomach which caused the vomiting. They were able to aspirate some out but not all. So a stent was inserted in my stomach to drain off the fluid. This I had for 6 weeks in the middle of March 2017 I had the stent removed. Unfortunately they a a ulcerated area in my stomach during the procedure which was biopsies and shown to be metastatic RCC. By that time I had been off treatment (targeted therapy) for over 4 months. A follow up CT scan showed penetration by the tumour through the stomach wall. I saw the gastro surgeon and he said it was inoperable as it was attached to major blood vessels. Any way I recommended the targeted therapy Axitinib and my last scan showed all is stable. I manage my insulin and diabetes well and have fully removed from my hellish ordeal. But I do not regret having the surgery as it has given me a better chance to have a longer life. I hope that what ever you decided went well for you. Linda

I had my pancreas and spleen removed two years ago. I had chronic pancreatitis for five years prior. Life after is hard. It is hard to regulate your blood sugars. But I didn’t have a choice. This was my only option. I don’t regret having it done. I take pancreatic enzymes to help digest my food and to get the nutrition from the foods. I take a Long acting insulin and a shirt acting insulin too. I check my blood sugar every morning and night and before I eat. It is definitely a life changing event but if I didn’t do it I would be dead. So I am grateful for the doctors and nurses who cared for me. It is a hard surgery to recover from. It took me at least a year to feel good. I still struggle with energy. I take it one day at a time. I hope this information helps you. It is better than dying. I have three daughters and a husband that I have to live for. My best advice is take it one day at a time and just keep fighting. Good luck to you.***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use

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I have a grandson who spleen has erupted from a fall on the tramboline he is in a great deal of pain and he is only 5 years old with sickle cell. will he be able to survive this issue

Who was your surgeon and what clinic did you go to?

I know this is an old post but I’m 30 and had the Total Pancreatectomy & Auto Islet Transplant, Solenectomy, Gall Bladder removal and I take 25,000 Creon x 2-3 with meals but ever since the surgery the bloating is awful without eating much. I maintain my weight but the water retention fluctuated my weight up and down 7-8 lbs within a few days. Do you get any digestive issues now??? Your reply would be so appreciated. Email is ***this post is edited by moderator *** *** posting of private information such as name, phone number or email address is not allowed in order to protect your privacy*** Please read our Terms of Use 

Dr. Shapiro did my surgery too TPAIT, splenectomy. I’ve had so much trouble with digestion - bloating is the worst. Foods are very limited. Any symptoms like that you have experienced??

Do you get lots of bloating and water retention and fatigue? My diet is so limited and the digestion is awful. Anyone else experience these things???

I had the tail of the pancreas out and spleen in 2011. I am on insulin pump and a DEXCOM 5. This is the one that tells your blood sugar at any given time . You do a finger stick in am and one in the pm. This calibrates your machine. I love it. Please get it. It will make you feel better when you can see these levels anytime.
I am having to go back in to have the rest of my pancreas out due to cancer. Both parents and older brother passed from pancreatic ca. They did not have any treatment , it was too advanced. Luckily mine was caught at the early stages.
Wish you luck
God bless and keep a positive attitude
Jen P

My boyfriend had spleen removed a few year's ago. Before I met him.then I found out he has hep. C. and chronic pancreatitis. He has been on hospital nchackedhimselfout. No good

I had no my pancreas surgically removed 2-3yrs ago.  I have extreme high and low glucose levels. Take glucose pills to increase glucose levels no help.  I have gained 20 lb & I am miserable.  Never talked to anyone in my situation. I need help.  I wear a dexcom and T-slim

hi lou lou,my name is chris and i have had 90% of my pancreas removed my spleen and gall bladder. I spent two months in a comer and then another two years in hospital, i lost 47kg when i came out of intensive care. I am type one insulin dependant and can not drink any more it has been a long road to recovery. I am currently serverly depressed and still struggling.My surgery was back in 2013 i had lots of complications and live with cronic pain.if ever you need some one to talk to im always available

Hi I’ve had the same surgery as you have and I’m type 1diabetic.18months ago I’m strugling with my diabetis and have now got a pump which I’ve had for 3 months.which is a lot better. My weight is a problem as I only weigh 40 kilos and have been as low as 34 kilos .im finding it all very difficult as it’s ruling my life.on top of that I keep getting viruses and pick anything up that’s going around .ive lost count of the times I’ve been hospitalised.does it get any easier as time goes on .i would be grateful for any support and advise you may have for me .i do my best to keep positive but sometimes it’s so hard. Angela

I am a 72 yr old Veteran who
now has no Pancreus..Spleen..Galdblatter..I lost them to Agent Orange..
at 69 yrs old...I take 22 pills a day...3 blood sugar test a day and 32 units of Lantus a day..
Plus Novolog with meals...Yes it possible to live...but quality of life drops a bit....I am scheduled for late this month
For exam with scope to get pictures of my liver....for all of us youll stay strong and eat heathy........Don

I found bovine pancreas that has helped my brother tremendously. ***this post is edited by moderator *** *** posting of web addresses is not allowed*** Please read our Terms of Use