About Those Missing Organs

The title of my blog refers to not one missing organ but a few. This post is about my pancreatectomy and those other missing organs.

I should tell readers that one thing I committed myself to when doing this blog is talking about some topics with honesty. If you’re finding your way here due to a search on MEN 1, pancreatectomy, etc., I want to give the real scoop on what it’s been like for me. And really, it’s been quite good all things considered. I have had a fantastic recovery that has made me able to continue with my active lifestyle.  Not everyone that has this surgery is that lucky, there is a lot of room for complications and the chances are high that one will crop up. So while I’ve had a great recovery and it’s been much easier than most – it’s not always as easy as it may seem to the casual observer.

Technically, what I had was a laprascopic pancreaticduodenectomy, but that’s too much of a mouthful to say. Checking out during this procedure were my pancreas, duodenum, gall bladder, bile duct, and spleen. The last three were mostly obliged to say goodbye due to the removal of the first two. Dr. Asbun at Mayo Clinic in Florida did the procedure along with his surgical team and completed the surgery in about 9 hours. Pretty good considering we were told it could be 14 hours. Since the surgery was done laprascopically I only have a few scars. The longest one which is only a couple of inches runs into my belly button. (I assume that’s the incision where these organs came out but perhaps you are like me, and prefer not to think about this level of detail.) There are a few other small incisions around my abdomen adding up to 5 small cuts where the cameras and instruments were positioned to make the cancer go bye bye. If you looked at my belly today you wouldn’t have any idea that I had such a big surgery. I’ve even received some puzzled looks from doctors when I tell them my medical history and they then do an exam. “Oh, it was laprascopic”, I say. “Yeah, not many surgeons do it, he was awesome”. I had great experiences with almost all my doctors at Mayo and Dr. Asbun was one of the stand outs. Funny, caring, and personable in addition to being experienced with this surgery.

I have blogged several times about what the diabetes after effects of the surgery have been like and how I manage them but the piece I don’t often talk about and that you can’t visibly see is what it’s like to live without the exocrine function of your pancreas. In addition to producing insulin your pancreas also produces several digestive enzymes. These enzymes are primarily responsible for digesting fats and proteins. Since I no longer have a pancreas I take a supplement to replace these enzymes, in my case it’s Creon 24. I tried a generic for a while after my surgery but this was definitely a case of generics not working as well as a brand name drug. I take 2-3 Creon with each meal depending on how much I’m eating and how fatty the meal is. God forbid I forget to take my Creon with a meal, particularly if it’s a fatty one. It’s extremely uncomfortable for me for up to 48 hours and unpleasant for everyone in my general vicinity. I think that’s as detailed as I will get. I think you catch my drift. (Get it? Hardy har har!)

In the short term I lost a LOT of weight. I had purposely put on some weight prior to surgery knowing that I would drop a lot. I think the grand total ended up being close to 40 pounds. For about a year there was no amount I could eat that would put that weight back, but gradually I did start putting weight back on and am now capable of gaining weight just like the good ol’ days. The experience did make me appreciate weight gain as a good thing rather than the negative association I had always had. 

Long term I am on a proton pump inhibitor (Omeprazole) and a lot of supplements. I have deficiencies in a lot of electrolyte and vitamin deficiencies due to poor absorption. Primarily magnesium, calcium, iron, vitamin A, vitamin E, and vitamin D. Check me at meal time and you’ll find me swallowing a lot of pills trying to make up for these deficiencies. It took a year or so but those deficiencies seem to be pretty much worked out at this point and there’s always a blood test around the corner to make sure I’m on track.

1 day of pills and supplements

One issue that continues to bug is some occasional stomach pain. From time to time I get a ‘burning’ sensation when I eat that can last for a few days with each meal. It’s not a killer pain but there is enough discomfort to make me wince my way through it. More of a pain, both literally and figuratively is a very occasional ‘attack’ that seems to be textbook bile duct/gall bladder blockage. It’s only happened a handful of times in the past couple of years but is enough to get me doubled over on the floor. Fortunately Ellen has got it timed to not lasting for more than 8 minutes and she counts down the time for me until it’s over. As best as anyone can tell, there may be a little fragment of a bile duct left and bile may be trying to make its way out. Too bad bile – you’re stuck there and it would seem I’m likely stuck with the pain. Crossing my fingers and knocking on wood that this remains a very occasional experience.

All in all, pretty darn good. Better than the alternative!