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

First of all I know this is a pretty old posting, but I have found your discussion on this very interesting.

I started my battle with pancreatitis Labor Day Weekend 2008. I spent 3 weeks in the hospital, 2 of which was in ICU. About every 3 months I would end up back in the hospital for a week or 2. In March and April of 2009, I was in the hospital 1 week then out 1 week. They wasn't doing much for me other than watching my diet. I got upset and asked to be sent to a military hospital for evaluation. I was sent to BAMC in San Antonio. When I first got there I was in good cheer, because the doctors seemed like they were going to do something for me. I have a 12cm cyst on my pancreas, Spleen Thrombosis (like that is how it is said/spelled), my gland-badder looks okay from what I have been told. The doctor has talked about doing surgery to drain the cyst, remove the gland-bladder and spleen since August of 2009, but every time I go down to visit they put if off another 3 months. Which after reading these postings, gets me thinking that I maybe heading for this big surgery everyone here has been talking of. The only real explanation they have been giving me of why they keep pushing my surgery back is that it is still to risky.

If anyone could give me their words of encouragement or advice, I would gratefully appreciated. I ahve no fear of surgery or whatever plans they have for me because I know I am in good hands with my Lord on my side.

v/r

Jimmy Crump %-)

February 2nd my dad went in for surgery because they found cancer in his duodenum. Apparently according to all the tests he had done he only had cancer in that site but once he went into surgery they found out his pancreas 2-3 lymph nodes gall bladder and liver were affected he's doing well now still recuperating. According to his oncologists there's no radiation or chemo that could be done for this type of cancer everything has been removed according to the surgeon but he has to follow up with his oncologist to make sure the cancer was all removed and we are praying to god it does not come back.I wish everyone the best of luck and strength.

My heart aches for all of you affected by these issues. I had my GB out 01/05/10 and felt decent afterward for a few weeks than the pancreatic pain started. Mild but the nausea is the worst. I am hoping that the GB removal adjustment time is all that my problem is. But I don't know how I could live feeling like this. It has killed my marriage and at 32 I feel twice my age and I hate it. I am going in for additional testing and hopefully will have some answers.

Hello from Tasmania Australia.
Thanks for all the information here I have been encouraged very much.
I have been told that I could not live without my Pancreas so your stories give me new hope.

The ENZYMES I take with Everything I eat or drink are CREON 25000 ml & they have relieved the Constant diarrhea suffered with for 5 YEARS.

I'm a 57 year old male & I think I have hereditary Pancreas issues, my mother died from similar problems & I have had problems in that area as long as I can remember.
I've had a stent put into my Pancreas & my liver only to have them removed two days later due to my body rejecting them & going into shock after which I was told there was nothing further they could do other than medication for the pain & nausea.
I now take morphine & codeine several times daily to enable me to function.
The medical treatments available here are years behind mainland Australia & the rest of the world.
I wish I was somewhere else on this planet with the treatment options I read about here available to me.
Without my spiritual beliefs & the hope for the future that provides I would find it hard to face each day.

Thank you all for your posts here. My son, 16 years old, has been battling Chronic Pancreatitis for 7 years. It is genetic and there is evidence that two of our other children may also have the mutation.

Is there anyone on this list that has experience with juvenile CP? Our Doc's at the Cleveland Clinic are now talking about taking his pancreas out. He has already had the Whipple procedure done....but his pain and nausea are almost continuous now. They are also going to try an Islet Cell transplant into his liver.

Any input would be greatly appreciated.

Delohouse.... Please contact me... I am 23 years old.. Had a whipple in aug of 2008 due to pancreatitus since i was 13... I just got told today that the rest of my pancreas must come out due to it has stopped working... Please help.. I have NO idea what to expect with my hospital stay or anything...

Dear "Guest".... If you would like to correspond please ....I am happy to share what we know....

DELohouse


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Like so many of you, I am so happy to have found this thread. Up until now, I have never found any others who have gone through this. In July 2009, I had 85% distal pancreatectomy, splenectomy and gall bladder removal. My diagnosis was Nesidioblastosis. It is a rare condition in which the pancreas over produces insulin and causes severe hypoglycemia. I have been disabled ever since. I am a type 1 diabetic yet at the same time my pancreas is now regenerating itself. I had no idea that it could do that until now. My hypoglycemia is slowly returning. My sugars still go high then go low. I feel like I am walking a tight rope. I can no longer use insulin injections because of the lows. I must rely on pills to keep the highs/lows from being too severe. It has been almost a year since the surgery and I am beginning to believe I will never feel normal again. I take Creon 24000 yet I still have either severe diarrhea or constipation that lasts up to three weeks. The nausea and vomiting has improved but I never know when it will strike. I have slowly but steadily lost 41 pounds since the surgery. No matter how much I eat, I still lose weight. Because of the vomiting and diarrhea, my electrolytes are always out of balance. I am still anemic. I am sooo weak. I suffered significant brain damage from the many hypoglycemic episodes pre-surgery. Now the doctors are concerned that the encephalopathy will also worsen now that the hypoglycemia is returning. They want to avoid removal of the rest of my pancreas but it may come to that. I am still in shock since I recently learned that my pancreas is regenerating itself. Has anyone out there that has had a partial pancreatectomy experienced regeneration? It is really comforting to read the stories of others who are going through the same issues. I hope you all will continue to post as time goes on. I would like to know how you all are doing. Please stay in touch. Best wishes to you all.

Hello to all,
i just learned today that I am going to be schedule for surgery to remove a mass that is on or in the middle toward the tail of my pancreas. I am 51. and i am scared. i have had my gallbladder removed in 1984 and they found this mass in a cat scan while looking for the cause of my recent stomach problems. I have had a stomach staple in 87, hernia and appendix in 97 . I am not diabetic although my blood sugar been a little over normal in cbc test. the scan show my liver, kidney and spleen are normal. I read the post and am scared about what to expect after surgery. The surgeon said they may or may not remove the spleen but it is a possibility. I am a single mom with a 13 year old son. How is recovery. I thinking it would be best for my son to spend the summer at his sister instead of being here. I will probably be here alone ater I leave the hospital. My question is what should i expect the first couple days/weeks after surgery. will I need help or can i handle things without help. I appreciate all the comment I read.

hi,

Pancreas seems to be a very weird part. My wife is suffering from pancreatitites since Jul-09. she had 4-round of hospitalisation and last time she had stenting done to remove a pancreatic duct stricture. The pain has gone a bit less, but still she is not able to sleep soundly. The only thing that worries me is that she has a bout of vomitting 1-2 a week, if any one has gone through same please guide me.
I am really worried about her and dont want to see her loosing the pancreas as she is only 26yrs. Any help would be appreciated as i found doctors non commital on any specific output/cure.

I had my pancrease, spleen and gall bladder removed in 2002 after 3 years of pain from pancreatitus. I have lived pain free ever since and I'm happy I did it. I am now a diabettic but I eat what ever I want as long as I watch my sugar level . Recovery time was not that long
I think I was only in the hosp. for 4-5 days after. I would do it all over again!!
B Henderson

HI,
I had my pancreas and half of my spleen removed at age 7 due to nesidioblastosis and i have been without for almost 20 years. Ive lived witht he T1 diabetes ok with few complications, i take insulin and Creon forte. My main issues are digestion and control of my blood sugars. But what im really here for is information on the effects of no pancreas on fertility, if there is even an issue.

I was idagnosed with PCOS and I wonder if this was due to injecting insulin. I am not overweight.

Any one out there?

Hi, My husband had his pancreas and spleen removed in a second surgery which followed about a week after he had a Whipple proceedure to remove a colon cancer tumor the size of a canteloup. They removed part of his stomach, small intestine, large intestine, 20% of his liver and his whole right kidney and gall bladder during that proceedure and I think only a bit of his pancreas. The tumor was high up and grew in rather than down and out. It took them ages to find it and they first thought it was small intestine cancer and suggested only chemo. After several months of chemo we went to Shands Hospital where he had a better CT scan which showed the tumor was actually starting in the large intestine. So it made him Stage 4 garden variety colon cancer ---we were thrilled as that gave him a chance and surgery was scheduled. He had a massive bleed after the first surgery and that is when they had to go in and remove his entire pancreas and spleen. THE GOOD NEWS IS THAT WAS BACK IN 2004! He was 62 at the time and it was 4 months before we were back home. He had to learn to walk again but now works out in a gym at least 4 days a week and walks every night after supper.

I'm writing because his glucose levels are crazy! Just this morning after he had his usual hearty breakfast he was at 49 ---and he was trying to get out the door to go volunteer at county court where he used to work as a program administrator. I made him drink juice and sit until he was safe to drive but I'm sure breakfast will kick in and by lunch he will be sky high. It is like living with a 14 year old girl with PMS 24/7. His A1C numbers are usually under 7 but I think that is because he crashes which brings down his high 200s and occasional mid 300s. Even with working out as much as he does and usually being good about eating. One thing we recently discovered is that every time the insurance company decides not to allow a certain type of the enzymes he must take to digest his food or they are no longer made for some reason it impacts his blood sugar. It seems different ones do the carbs differently. We live in a rural area with doctors used to type 2 and a few kids with type 1. A guy without a pancreas!!!! Nobody knows what to do with him. If they "tweek" his insulin regime it sends him plunging or sky rocketing.

I was very pleased to find such a site and kick myself for not searching sooner. How many people are there out there without a pancreas? How many use a pump? For some reason my husband doesn't want to. Has anybody tried to use the new glucose level warning systems? That is what my biggest concern is. He wakes up in the middle of the night now and knows he is low but for how much longer? He is 67 and cancer free for 6 years. His surgeon closed his case and pretty much declared him a miracle man. But I am on constant duty. Besides those of you who are living without your pancreas, spleen and gallbladder who might be willing to share, are there any caretakers out there who have any tips? We did establish a phrase early on "DO THE MATH" and when I say that my husband does not argue but drinks the coke or juice while he struggles to see if he really is low. It's a tip off when he is having trouble following something on TV and it is a baseball game and the bases are loaded with 2 outs! He has actually asked me if I know what is going on ----I don't watch sports and even I know what is going on then. I say I sure do as I get out the can of coke!

I seem to have written more than anyone else. I only have one more thing to add. My husband has trained everyone who ever shares a meal with us to remind him to take his Enzymes. Even our granddaughter when she was 4 would say "Pop pop did you take your pills?" because we ALL know what happens if you don't take your enzymes..............

insulin pump best think ever, I lost my pancreas , spleen and gallbladder in Sept 2008. I had low and highs very hard to control blood sugar tell I went on the pump in March of 2009 . Life on the pump has handled the lows and highs , I'm on Medtronic minimed my body is very sensitive to insulin only on about .04 every hour and take bolus for the amount of carbs I eat. I shut off the pump when I exercise - total insulin in 24 hours is average 18 units . When I ride my bike I shut off insulin pump the whole time and have to watch for lows and the best part is I can eat without highs . oh by the way I'm 59 years old

I would love to speak with you, as in 7-2006 I had the following done in one surgery: removal of pancreas, spleen, gallbladder, along with massive vascular reconstruction. This instantly made me diabetic with a malabsorption problem that has created cronic kidney stone disease in which I have a minimum of 4 kidney surgeries a year. I will be 53 this Feb. & am weakened of it all. I eat, & 15 min. later, I have diarreha. Is there anyway we can discuss this on the phone? Blessings, Kathleen