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

David, How much and what kind of enzymes are u using? My husband has had same as u, but can not get the usage of same right.

My husband had all of his pancreas, spleen, right kidney and gall bladder removed a long with part of his stomach, liver, large intestine and small intestine in 2004 due to a colon cancer tumor the size of a cantaloupe.  After spending 3 months in Shands Hospital in Gainesville plus one month in their rehab unit he came home in a wheel chair.  Today he works out in the gym 5 days a week and if you didn't know him before you would never know he had been so sick and almost died.  He takes insulin with meals plus lantus for long acting.  As for his enzymes he is now on Zenpep (pancrelipase) 3 delayed release caps with each meal.  This gives him a total of 60,000 USP Units of lipase, 300,000 USP units of amylase and 204,000 USP units of protease.  And we all know when he has forgotten to take them!  He was 62 when he had his surgery and taught everybody including the grandchildren to ask him at meal times if he remembered to take his enzymes. 

When he was having his surgery which at first was just a Whipple plus a kidney removal they told me he would be fine.  But 8 days later he had a massive bleed and they had to go back and remove his entire pancreas and his spleen and they weren't as optimistic at first.  They said technically it should be ok they just had never taken that much out of one person at the same time before.  But here he is 9 years later doing pretty good.  The highs and lows with the glucose is the worst part.  He can eat the same thing and do the same thing and be at 45 one morning and 125 the next.  He can come back from the gym at 80 or 180.  Going out to dinner is always risky because you don't know what they put in sauces so he can be at 300 in a blink of an eye.  He likes using the pens so I can't seem to convince him that a pump would level those numbers out.  It's the lows that scare me the most for his sake but the highs are also a pain to deal with for a different reason.

He is now experiencing severe stomach aches every few weeks and they are trying to figure out what is causing them.  It might be from bacteria that over produces gas.  Other than those he has been fine, travels, lives life like it never happened.  I think he gets them when he eats too much :-)  If you have a good and positive attitude and great doctors you have confidence in you will do well.

We'd be happy to answer any questions if we can.  We have survived 9 years and have helped many friends and their family who have faced similar situations.  We were lucky and very informed when we had to deal with all of this.

Thanks for your info. I have been told that when I have a lot of gas and diarrhea it is because I have
taken too much enzyme. What is your take on this?

That is a good question.  We were told that un needed enzymes would just pass out of his system but no mention of with what side effects.  His original surgeon who is one of the best liver transplant surgeons in the world, and now in San Diego, told him to take extra enzymes if he was going to be eating a big meal.  My husband doesn't do this and I think this is when he gets the worst of his attacks i.e. Christmas Night after a huge meal Christmas Day.  But his original enzymes are no longer covered by his insurance and these are the closest we can get to them.  We have nobody close to use who is an expert in this area.  He was also supposed to take an enzyme with bed time snacks but now with these delayed release enzymes who knows what exactly is the best thing.  During one of his stomach ache attacks I did have him take another enzyme because I didn't think his food was being digested.  But now we think GAS is the culprit.  During one of his scans the radioligist reported that his Right Kidney was obstructed by bowel gas --he doesn't have one.  And during his last one a different radioligist said his pancreas was normal ---he doesn't have one!!!  They did both notice that his liver was out of shape from be regenerated and his left kidney was larger.  So I think producing a lot of gas comes with the territory as does many trips to the bathroom especially in the morning.  I make sure we have heavily scented sprays on hand for him to use so he doesn' cause an enviormental hazard :-)  After 9 years we take the humor where we can find it.  Some things will just become a new normal.  We hope to get some new information about the gas situation in the next few days.  He is having a colonoscopy this week too.  I would be more worried about too few enzymes than too many.

Hi, for what it's worth, I have lots of gas without taking any enzymes. I've tried them but they hurt my bowels so I've been skipping them. I need to take a ppi (omeprazole) for acid and to help digest fats but the side effect is constipation. This is an atypical reaction, most get diarrhea from ppis. Then I take magnesium for the constipation which sometimes causes diarrhea. I can't seem to find a good combination of diet and meds to make my stomach, bowels and pancreas happy. There are so many variables - antacids, enzymes, fiber, vitamins, foods... By the way, I had a distal pancreatectomy and spleenectomy in August 2012. Prior to that I had about 5 years of acute pancreatitis which has left me with moderate, chronic pancreatitis.

Have your doctor test you to see if you have bacteria in your bowels that produce an over growth of gas.  We are pretty sure that is the real culprit in my husband's case but the day of his  test he forgot about his restricted diet and ate all the wrong things.  In his defense his glucose was in the 40s so he wasn't thinking straight and ate the opposite of what he should have.  That pretty much invalidated the test results which of course came back negative.  But there is a bacteria which is very common for people who have had abdominal surgery and it causes excessive gas.  Once confirmed all you need to do is take some antibiotics and it kills the bacteria.  It can come back but once you have been cleared of the symptoms and the exact ones return you will know what it is at least.  So see if your doctor is familiar with this bowel bacteria and will test you for it.  Better yet, give you the antibiotics and see if it clears up.  Ours won't do that as he wants the cash for the tests.

My docs tested me for H. Pyloi in the stomach, the cause of most ulcers; and C. Difficile in the bowels. Both were negative. I see there is a test for bacterial overgrowth in the small intestine, called lactulose hydrogen test, however it is not a simple lab test and somewhat controversial. I'll ask my doc about it. http://www.ncbi.nlm.nih.gov/pubmed/19496193

My husband's Dr. decided rather than to try to retest him he just gave him the antibiotics to see if that will do the trick.  Augmentin is the name but of course he got the generic.  I have been reading some other posts and people have mentioned being diagnosed with gastroparesis which is a type of neuropathy of the stomach so it can't move large quantities of food through the intestines which might also be a problem.  Some people have a terrible time and have vitamin deficiencies and their insulin isn't absorbed properly on a regular basis.  Some people have it on and off.  So we are hoping for just having bacteria but from reading posts here and from an article in the Diabetes Magazine we now have another route to explore.  They need to put a pacemaker in the stomach to facilitate digestion if it is the other problem.  I guess the 2 problems can have similar symptoms. But I would try 10 days of the biggest antibiotics I have EVER seen before going down the other path.  If people think the enzymes are big they haven't seen anything yet as big as these augmentin!!!  There is a spray I buy call Pill Glide that really helps get the big pills down or I take them with apple sauce to get them down easily after 3 neck surgeries.

Hi guest my boyfriend is currently losing his pancreas due to unknown reasons and I'am scared of the effects on his diet ur husband seems to have it sorted does he find it hard to gain weight tho as my boyfriend has always been big built and I know the weight loss will effect him mentally thanks for reading

Hi Donna,  My husband was a big guy and a retired police officer when he was diagnosed with cancer and they removed the tumor "the size of Rhode Island".   It took him months in the hospital because they removed so many organs and he did lose a lot of muscle mass and about 100 pounds at one point.  Even after a month at rehab he couldn't walk.  He had at home rehab but nobody thought he would really be able to do much after this surgery.  He had will power nobody counted on.  And that is the most important thing of all!  He was able to get to the point that he could go to out side rehab and in no time at all even was back to driving himself.  We belong to a club where he was able to get a work out routine that took into account that he had no abdominal muscles and had had another surgery for a huge hernia from the surgery.  But he never gave up.  He looks better now than most men his age and will be 70 in a few months.  He still works out 5 times a week.  Tell your boyfriend he can do whatever he puts his mind to do!!!  I would recommend that he look into being on the pump if he is going to be insulin dependent.  My husband was not even left with a sliver of his pancreas but he got used to using the insulin pens and now wont change.  The pump would give him a more steady coverage and he wouldn't have to remember to bring his "man bag" with his supplies with him.  There are also meters now that can monitor glucose readings and alert you if you are going to low which is my greatest fear with my husband who has highs and lows all the time.  His mood swings with his glucose swings and that is something YOU will have to get used to.  It is not him but the glucose talking.  Early on we established a code phrase for when I thought he was low "DO THE MATH"  He doesn't argue with me at all he just will take his glucose or drink some juice and then take it.  I'm usually able to tell within a few points of what the meter says.  Their skin gets sort of grey and they get slow and can't process things well at all when they are low.  When they are high it is like being drunk and aggressive.  I have left the house and told him to take his glucose readings and after he has taken some insulin call me on my cell phone when he is back in range.  But this is after dealing with it for 9 years.  So I get testy too :-)  Highs won't kill him but lows will.  I don't leave his side when he is low.  There will be much for you to learn but if you are in it together it shouldn't be too hard once you get the hang of it.  And it should impact his working out at all, it should be good for him to help control his sugar levels.

Susan

I had a modified whipple performed in Jan 07. They call it modified because they did not need to take part of the stomach. The Dr took out 75% of the pancreas due to a bile duct obstruction that had digested alot of the pancreas. The surgery is not the easiest thing, but the best advice I can give u is as soon as u can get up and walk around, do it. A little at a time. The pain medicine had to be injected into my spine. I could not sleep because i had an adverse reaction to the pain meds so I walked. The more u walk, the sooner your digestive system will start working and dealing with the change. Hope this helps. Good luck and God bless

Hi,

A friend was diagnosed with pancreatic cancer & is to have surgery to remove the pancreas &

spleen.Is any one familiar with recovery time ?

Hi Guy, I had a distal pancreatectomy (tail portion removed, about half of the pancreas). It was supposed to be robotic surgery but they couldn't get the spleen detached from the tail so it was converted to a full open and the spleen was taken too. I was out of the hospital in 3 days and could have went to work in about 3 weeks at a desk. The whole recovery takes months just like if you broke a leg. 6 months later I'm still eating smaller meals and probably will forever although others experiences are different. Today I went for a diabetes test as I was having symptoms. I bought a blood glucose meter and the readings were high. Of course if your friend is having all of the pancreas removed then they will have immediate diabetes unless they have an islet cell transplant.

Steve

my husband was 52 when in 2010 he was diagnosed with an IPMN and had his total pancreas, spleen and gallbladder removed in a 10 hour operation on 22 June 2010. Nearly 3 years have passed and he has done so so well . He is obviously a brittle diabetic taking insulin 4 times a day as well as Creon 25000. he has just lost 4kg over the past 6 months so the docs have increased his Creon to 50000 per meal (3 times a day). He does get awful cramps and taked magnesium tablets! He has been getting excruiating abdominal pains for the past 2 or so years which come on so suddenly ( usually in the evening before a meal but sometimes when he has eaten sometimes before he has eaten) he collapses from this pain which the attacks can last anywhere from 5 minuts to 30 minutes and he is exausted thereafter. He has found that if he can get to ENO's ( antacids) quick enough and can get the wind out then its not to bad but it is usually a bad attack and he just cant get the wind up. He tries stretching jumping , patting him on the back. its awful to watch as he is so helpless. He has just had a scope and they found a bit of scar tissue which could cause a kind of "blockage" that could prevent the release of the wind but actually they have no idea. He them had a barium meal which also doesnt prove too much. They dont want to operate unless 100% necessary and certainly wont operate not knowing what is wrong. So we at square one again. But he has done so so well and i am so proud of him and what he has gone through. It has been major!! We live in South Africa - Cape Town and he still goes fishing on boats in the middle of the ocean - takes his food, insulin and juice incase he gets a sugar low but he never thought he would get out to sea again. The other day he caught 105 big fish - he has never caught so many before! Any suggestions regarding the trapped wind will be appreciated as its so unpleasant!

Hi Sandy, It has now been about 8 months since my surgery and my MRI last week showed that my pancreatic duct (what's left of it) had shrunk back to a normal 2 mm diameter. So I may have been lucky, but the surgeon said in 30% of cases the IPMN could come back in the remaining pancreas... Early on I had similar symptoms with trapped gas causing incredible pain. You can try to monitor which foods are the worst offenders but that is unreliable and frustrating. The only thing that worked for me was lots of magnesium supplements to relax the whole GI tract. Magnesium oxide is the most common and cheapest cost but also causes diarrhea. Others like magnesium citrate or magnesium malate are are better. Sometimes I would use Milk of Magnesia if it was bad and just deal with the diarrhea. I needed to limit calcium supplements as they act in the opposite manner and tense the GI tract. But you do need calcium so it is a balancing act. I too am a fisherman! Good luck. Steve