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

Good afternoon,
My mother had her pancreas removed almost 5 years ago. She was 79 at the time. She was able to go to the pump after about 3 months. Has had it ever since. She watches her sugar levels very close and is leading a very active life. She does have some days that she doesnt feel well but they dont last. I have to say, she travels well, does yard work, housework, and walks every day. We were just talking the other day about her surgery and she is thankful she had it. It was a benign tumor but very large. It was sent to pathology twice. the doctor kept saying, "A tumor that big is always cancerous". She was in surgery for 9 hours. Was supposed to be in the hospital for a minimum of two weeks. I was able to fly her home after 10 days. It was done at Mayo Clinic in MN. There are still medical professionals that will tell you that you can not live a full life without a pancreas. I have an almost 85 year old mother that will disagree.

I dont have a pump but thats only because I dont really want one right now, mainly because I cant afford it on my own right now and I worry about how it would effect my life (im only 27!)

I have major issues with Digestion and my new tabs, the Forte ones, have been causing nausea and vomitting due to incorrect dosing but im getting a grip on it now on my own lol

I had my pancreas, spleen and gall bladder all removed August 20th, 2009 at the Cleveland Clinic. I am now a pretty health 31 year old. I am not diabetic due to an eyelet cell transplant.

In 2000 I found out I had Chronic Pancreatitis when I was pregnant with my youngest child. I had to deliver him 4 weeks early due to the pain meds I was giving in the hospital. I had several test done, Blood test, MRI's, Ct-Scans with and without contrast and Dye. I became Jaundice real bad. The Pain I had was worst than being in labor. 2000 after my son was born I had a complete tubal, then in 2002 I had a partial Hysterectomy. January of 2003 I had another MRI done and they said they couldn't see any mass, tumor or cyst on or near my pancreas. Not even a Month later I went into toxic Shock.

In 2003 I went into toxic shock due to a sudo cyst it put me in the hospital for 72 days ICU for 4 days not knowing who I was or anyone around me. I had to have a blood infusion, The strongest antibiotics there is and They started my on a TPN bag for my nutreints. I wasn't allowed anything to eat or drink for 69 days. Once they shrunk the cyst they removed it and 60% of my pancreas. For the 6 years I was in and out of the hospital due to attacks with the Pancreas. I would spend 3 days to a week to try and get my pain under control. Over those years my Pancreas was slowly dying and becoming Calsified to where it started affecting other organs, The liver and lungs. I have always been a bigger girl in 2005 I was at 250 pounds. March 5th of 2009 I went into Royal Oak Beaumont Hospital in Royal Oak Michigan and I had the best Doctor's anyone could ask for. Dr. Julie Stein and her staff saved my life. The day of the operation Dr. Stein told me she would be removing my Spleen, 40% of my stomach, Some of my small intestents, My Galbladder was removed in 94.
When I woke up in ICU the only thing she had to remove was my Pancreas. I spent 10 days in the hospital and then I went home. I knew my life was going to change totally after the operation and I was ready for those changes knowing that I had a second chance at a somewhat normal life. Well for the first 9 months I thought I was doing pretty good. Then I had to be rushed back to the hospital for pain, vomiting, everything I ate just went through me within about 5 minutes. Here it is almost 2 years after my operation and I now weigh 101 pounds. My skin and my bones are thinning out. I eat real good but I just can't gain weight. I have pains in my stomach every now and then but not bad enough to put me in the hospital. I am on a Insulin Pump. I take enzymens (sp) before and after meals. I have Dumping Sndryome and I have to take a shot in the stomach 30 minutes before meals. I am still on Pain meds.

Please people if you are having problems and if Doctors blow you off and don't do test stay on top of them. Demand them to run test on you. I was pushed away so many times by doctors. 5 of them claimed I was seeking drugs. They put this in my records and so it was hard for me to get a good Doctor to listen to me and give a sh*t about my problems. I went to 17 specialist ( Gasteroligist ) everyone of them turned me away. 2005 I went to a regual MD and he never gave up on me. I almost died twice and after my Operation I went back to see him for my follow up. I told him Thank You for saving my life. Dr. Hautea Cried well we both did and he hugged me. Good Luck and Stay Strong.

Please reconsider a pump. Your insurance will cover the pump and suplies you need for it. Trust me you will feel better because the pump does keep your sugar under control....

hello everyone reading all these stories i no longer feel alone wehn i was 20 years old i was told i had a tumor in the middle of my pancreas i did not know wat to think except what is going to happen to my girl who at the time were 1 1/2 and 3 1/2. i was in fear for my life the doctors sent me 4 hours to the seattle cancer care alliance where i met with my doctor who was planning on taking 2/3 of my pancreas all i could do is cry i was terified.  then three weeks latter i returned to the doctors to get my surgery done and over with anfter them telling me there was only a 20% chance off me making it out of this surgery with my life was a trip in its self. where they cut the pancreas was less then 1 cm from the main blood vessel that runs through the pancreas. my whole family was at the hospital in fear of what would happen next we were not very sure since the doctor said it was his first surgery like this one and did not know what to expect when he got in there.  he said it would only take 4 hours and after the 4 hours have passed my family still have not heard anything on how i was doing until 9 hours have passed the doctor went out into the waiting romm and told them everything went fine and i was out of surgery now all we could do was wait and time would tell. now i am 22 and perfectly healthy i have gone back every 6 months for a check up and noting out of the ordinary i am not tumor free and living with 1/3 of my pancreas and until now no diabites or any other side effects i was informed that probably would have encourtered. i hope this inspires all of you reading this. 

I was dxed with pancreatic cancer and had surgery on April 28th to remove half of my pancreas, spleen and renal gland.  I'd had my gallbladder removed 16 years earlier.  Long story short......the tumor came back benign~!!!!!!!!!!!!!!!!!!!  Don't lose hope if you've had a bad dx.  My tumor was large but not cancer like I was told.  I am still in recovery and wonder if I always will be.  I have nausea and must race to the bathroom after I eat.  I have little energy but have hopes that I will get better.  This is a major surgery and is very painful but there is always hope.  So far I am not diabetic but I surely have malabsorption problems.  Since my surgeon was an oncology gastro surgeon I know little about recovery or long term prognosis,

 I haven't seen a regular gastro doc yet but I plan to find one soon.  I am 43 and have lost 35 lbs due to surgery.  I have good and bad days.  If anyone wants to talk by email I am available at  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Hi guys,

I'm afraid to say my story on this subject doesn't have a happy ending, my Father went into Liverpool Royal Hospital in the UK to have his pancreas removed 4 weeks ago, he had a benign tumour growing on it, during the operation they removed his pancreas, gallbladder and part of his stomach as they said the tumour had attached to the stomach wall. He got through the operation great and spent only one day in ICU, he was on the ward reading a book on day 2.

After a couple of days he started getting really bad pains in his tummy, the staff on originally thought it may have been a heart attack, after an ECG they ruled that out and said it was probably just the painkillers wearing off so just dosed him up. The following day the consultant came in and wasn't happy with what he was seeing, he was rushed back down to surgery and it turned out the blood supply had been cut off to his stomach, his stomach had effectively died and the contents had leaked out into him, which was what was causing the pain - the acids burning his organs. They removed the rest of his stomach, also took out his colon and spleen. The day after he was taken back to surgery as the blood supply to part of his bowel had now been cut off and they had to remove part of it. He spent 2 weeks in ICU, during that time he developed an infection and he never properly woke up. Sadly last week we got a call saying we needed to come in, we got there and were told his heart was beginning to struggle, just as we got in to see him his heart stopped, the doctors decided it would be unfair to try and revive him and so just let him go.

As you can imagine, a lot of unanswered questions as we were told this operation had a 98% success rate with a 40% chance of a complication at some point occuring, we were informed the most likely would be a leak, but we never even imagined this could happen. The doctors don't seem to know what went wrong either and obviously won't even acknowledge the possibility it may have been something they did incorrectly. He went in a very fit man quite confident that this was the best thing for him, but clearly it had the worst possible outcome.

I'm glad to see so many of you came through it, hopefully what's just happened to us won't happen to too many others.

My husband and daughter both had pancreas, spleen, appendix, gallbladder, and parts of stomach and intestines removed due to hereditary pancreatitis.  Both had islet cell transplants as well.  My husband is insulin dependent diabetic and has been on pain medication ever since his surgery 11 years ago.  My daughter is pain free and insulin free.  She has some occasional digestive issues and occasional low energy- but generally lives a typical 8th grade lifestyle- 4 years after her surgery.  If you are considering this surgery- go to one of the top medical centers!!  This is life threatening and life changing.  Our daughter had severe complications after her surgery- and had a tough recovery- but I honestly feel we were with the best surgeon in the country- and he got her through.  Even though my husband is insulin dependent and on pain medication- he lives an active, healthy lifestyle.  He has a long acting slow release pain med that keeps his pain under control and allows him to have a job and normal life.  Enzymes, acid blockers, fiber, Miralax, and penicillin- keep my family healthy and active.  Get a GOOD GI doc- and keep making changes until you feel good!!

ecarson wrote:

Hi
I had my pancreas, spleen & gallbladder out as well (also part of my bile duct & small intestine.) I am 2 1/2 yrs out of the surgery. I am Type 1 diabetic and that isn't easy but its become much easier since the pump/ I take great care of myself, have 2 young boys, exercise everyday, very active in all my kids activities and have full, good life. It takes determination and a VERY positive attitude. Choose to live and surround yourself with uplifting people. We all have crosses to bear and we choose how we carry them through life. Feel free to contact me anytime for support. It really helps
Good luck!!
Eileen

hI EILEEN My husband had his spleen , gallbladder and pancreas removed he is in bad shape and very down. He needs to know you can recover from this.  ***this post is edited by moderator *** *** private e-mails not allowed*** Please read our Terms of Use

Hi

My husbands just had a similiar surgery to yours abt a month ago. He's feeling very low and weak. He's got a lot of nausea and experiences dizziness. Hes on a lot of medication. I need him to hear from people like u who have experienced a similiar surgery and make him feel positive. He has no apetite at all. Please help.

melanie.

I wrote earlier about my husband and daughter- who are both active and healthy now after this surgery. My husband recovered very quickly and was back at work full-time in a couple of weeks. My daughter, though, was actually in the hospital for five weeks after the surgery and had to stay on TPN for a few months- because she felt weak and nauseous and had no appetite.  She only went to school part day for several months and had a tutor.  We were very worried that she wouldn't feel "normal" again.  It was a long road- but getting her off the pain meds helped her feel a lot better (over about 4 months) because her system started working better.  Miralax and Prevacid were also a big help.  Psychologically, it was tough for her as well- so, we went to a counselor a few times and she had some relaxation techniques she used to help her rest and cope with pain.  We just kept going back to the doctor and tweaking things.  I am sure each person's recovery is different- but after about 7 or 8 months- we hardly even thought about her health anymore- and now she is a completely active, healthy teenager.  The surgery is so major- that the body has to have time to recover.  We have had a tough and an easy recovery- but in each case- it did get better with time and persisitence.  Good luck!!

I lost the tail of my pancreas and my 17 years ago, This was due to a mass found. I did okay the first five years or so, but then it caused me to have chronic pancreatitis. A year and half ago they took the rest of my pancreas out out. It was a very hard surgery and it took me about nine months before I could say I had made the right choice. I was not diabetic before, but now of course I am a brittle diabetic. I now have an insulin pump. Over all my quality of life is better. I do experience a lot of stomach pain, but it is so much better than pancretitis. I hope all is going well for you.

I have just had my entire pancreas removed how was the pain after operation and eating

my name is Deborah and I had a wipple done in 03 for the back of the tailf my pancreas and then in 07 the front part of my pancreas, I had had so many pancreas attacks being admitted to the hosp. so much, I am not a diabetic as of yet since the last surg in 07, but they do check it when I am in the hosp.if if it goes up a little they will give me one unit of insluin, now again I was just back in the hosp and now they are saying I am having to many and they want totake the remaing pc. I am affaird this is all new to me, and one dr that did the last surg told my daughter I would not be able to survie it, what should I do I don't want to died