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

We are in the same boat. Please tell us what you eat. Thank you Wendie

I am in a similar situation. My gall bladder was removed and surgeons said that I need a complete pancreas and spleen removal. Endocrinologist did not give me an optimistic outlook for diabetes control after the operation. Pancreas has cysts at head and tail in main duct. I don't know if I roll the dice or get the operation. Condition is pre-cancerous at this stage. Anyone else who has faced this situation. Don't know what decision to make and feeling uncomfortably alone. Mitch

I am a 54 year old male. I had a total pan 3 years ago. 6 years prior to my surgery I began having symptoms. I was carrying a heavy object and had a bout of pancreatitis. The severe epigastric discomfort lasted over an hour as I lay on my back. No other symptoms. I went to doctor, had a cat scan and it was negative for issues in the region of my symptoms.
Over the next 6 years I had several bouts a year that seemed to be triggered by lifting heavy things. I thought I had a hernia of some sort. Anyway, symptoms got more frequent till I got a repeat cat scan.
Turned out to be a missed diagnosis. There was an IPMN. Mucous cyst. Now at 9 cm long. This type can be microscopic and can turn cancerous. So I opted for total pan. They also took spleen and gallbladder.
Life is good now. I tried insulin pump but am too muscular. I bent the needles. Tried them all. I use long and short insulin using regular needles. Was able to get A1C to 6.2.
Also started using Dexcom glucose sensor. Love it. App on my phone shows sugar every 5 minutes. Alarms tell me when sugar is too high or low. Sleeping better knowing I have alerts to wake me if high or low. Only change sensor once a week. Adhesive good even with hot yoga classes. No lumps or redness. I highly recommend dumping the pump for the every 5 minute sugar reading. If you can't afford both.
Tips I've picked up:
I became instantly lactose intolerant after my surgery. Try lactose supplements if your having gas and loose stools.
I could not gain the last 10 pounds to get back to my pre surgery weight till I left my bad marriage. Get rid of stress and stressful people in your life. If there is someone who is dominant and running your life read this book.
Emotional Blackmail by Susan Forward.
Long term grudges? Drop it and realize we all make decisions that we think are correct. We're all right and all wrong. Whatever! If you miss those people call them up, give a hug and move forward. Feels good.
I had a long stretch with muscle spasms in my feet, abdomen and shoulders. Take good quality vitamins. We aren't digesting and absorbing as well as before. I believe I was Magnesium deficient. Took 350mg twice a day for a month. Doing much better. My blood levels were normal.
Start doing yoga 3 times a week. Socialize with high energy, positive people. That's the kind of sharks to swim with. Hike or walk briskly for a half hour here and there.
Eat better foods. Take a day off. Go into vacation mode mentally before your vacation starts. You'll sleep better. Don't ask people what they do for a living. Ask them what they like to do. Talk about ideas and dreams.
Just my thoughts.good luck
Mike

Laura,
I am scheduled to have half of my pancreas and spleen removed. I'm terrified. I am a 34 year old mother of 2. We wanted more babies, im heartbroke. Mine is a large mucinous cyst. How was recovery? I have had 2 c sections, is it worse?

I appreciate your response so very much. I was leaning toward not having it but glad to hear it can be done. They say 40% chance of becoming cancer but I wonder if odds are greater when you have IPMN and cysts on head and tail. Seems to make sense. I am 73.

I'm happy to find this post. I'm 26 years old and had my entire pancreas removed, part of my stomach, gallbladder, and spleen. It's been about 3 years since the surgery and I must say although life is much easier now than it use to be. Managing everything is still very challenging. Food is just not your friend with this condition. And the diabeties is super stubborn.i have a lot of good days where I have no problems at all but I when I have a bad day and something I ate doesn't agree with me, it could make me feel horrible for two and three days at a time. Indigestion and lack of energy because your body isn't accepting the food. It's cause holding down a job to be very hard. I'm learning that living with this is just a constant learning experience. Keep your eyes open for foods that don't bother you and stick with them! 

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I have chronic pancreatitis and will be having surgery on the 14th of November. They are removing the pancreas, spleen, gall bladder and part of stomach and intestines. I am nervous about the surgery and recovery. But I have constant pain for a year and half now. I year ago I almost died due to a aneurysm in the artery between the spleen and pancreas. I have had several severe health problems since I was 19 years old. I just want to be pain free and able to keep food down. Would you say that you are much better after having the surgery?

Hi there, I am a future TPAIT candidate for U of Alberta. I am from quebec. I was wondering if you were from Alberta or another province? The reason I am asking is that I am from quebec and my physicians here seem to be blocking me from doing this procedure. Do I need my physicians here in quebec to approve the procedure for it to be approved by medical assurance? I hope its not that complicated because I doubt my physicians here will sign for me to have the procedure. Their strongly opposed to it but do not know the amount of pain im in :(. I hope its covered regardless and that I can just directly go to alberta to get it done without dealing with the physicians here.

I had my TPAICT in April at the University of Alberta Hospital by Dr James Shapiro. I live in Ontario, and found the Dr myself. OHIP covered everything, except travel arrangements, the hospital took care of everything. Best thing I ever did, that man gave me my life back.

I had my pancreas, gall bladder, spleen, duodenum, part stomach, part intestine, some lymph nodes removed in January 2013. I was fine until I had a couple of falls now my other intestines seem to have come up under my ribs. I still suffer from nerve ending pain. Am now in a nursing home and can't do much for myself. Thanks.

Hi thank you so much for your reply.Good to hear, Im glad it worked :). I hope you dont mind me asking but I really need help. How long did it take from the moment you contacted him to get the surgery? Did you have to have a doctor from ontario to sign to approve your coverage with ohip for this procedure? and did you get diagnosed before you saw him or he is the one who diagnosed you with cp? The reason why I am asking is that the surgery is considered experimental therefore some assurances need approval from your province to be covered.

Hi, I am from the UK and 2016 May I had my spleen and tail end of pancreas removed as I had a large mass (not cancerous). while in hospital I got sepsis so quickly was put on anti biotics, was quite poorly for months and now have been told I have a couple could be more hernias so am having a scan on wednesday 11th oct. so am hoping all will be ok once I have the hernia op, I am 76.

was she was recovering the nausea and vomiting didnt go away do you happen to remeber

yes sorry i didnt make sense no i read ur response right after 4 years well my sis just got her auto islet transplant surgery done and she still feell nausea and vomiting

and how do you feel if i may ask? my sis had hers done 6 days ago and she still feels sick and nausea and vomiting

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