Out of the hospital but with many unknowns.

They released me from the hospital today but we return home with questions as to what is causing the problems.  I am consuming liquids and solid foods but I am still having difficulty with meals of any reasonable size.  My diet is going to be limited to smaller meals with a significant portion of each meal being some sort of full liquid diet.

What we do know at this time is this:

• I don't have a mechanical obstruction because when I am on a full liquid diet, I am able to pass food easily and do not have any of the other symptoms that I have been experiencing.
• I don't have a gastric outlet obstruction.  We know this because I had an endoscopy on the day I left the hospital and nothing in my stomach or duodenum appears abnormal WRT obstruction potential.

What we still have on the table as possible diagnoses are:

• Ileus.  Essentially, some part of my digestive tract going sleepy and not allowing things to pass.
• Gastric paralysis. This is where the stomach has similar symptoms as ileus in that it is somewhat sleepy.  The stomach does not properly grind the food that you have put in it and it takes longer than normal to expel that food into the small intestine.

My opinions of these are uncertain.  Unless my ileus is throughout the small intestine, right up to the stomach, I should be experiencing severe cramps whenever I am eating.  This makes me suspect this diagnosis somewhat.

Gastric paralysis seems to have quite a bit going for it.  I experience all the major symptoms of this diagnosis and that makes is a front runner at this point.  There are some medications that have been successful at addressing this disorder so that would be something with potential.  It also always responds well to a full liquid diet which matches what I was doing the first day in the hospital.

Gastric paralysis also can be either confirmed or ruled out with a relatively simple test.  Essentially, I go to the radiologist on an empty stomach.  They have me eat some item such as one or two hard boiled eggs and then take an x-ray every 15 minutes (or some other interval) to evaluate the rate at which that food leaves my stomach.  This is then compared to expected timeframes for stomach evacuation of this amount of food.

Of course, these are only the current potential diagnoses and I hope that we don't have to look any further than these initial guesses and can move me forward!

Don't come to me for medical advice!

Several days ago, I wrote about how my condition had worsened and it got so bad that I needed to head to the hospital on Sunday evening.  I had hoped to hold out till Monday after the kids went to school but I hit a wall and could not go any further.  I will start this off saying that my self diagnosis was wrong but not completely wrong.

We got to the ER to see a relatively full waiting room and I thought we would be sitting for quite a while but I must have looked quite miserable because, after checking in, we were called back just 5 minutes later.  I know they take people in order of criticality but I never imagined that I looked that bad but there didn't appear to be any broken legs or car wrecks waiting to be served.

Stephanie and I got put in a room and immediately started the second of many recitations of my medical history and they put in an IV.  I am normally a difficult stick but the tech got my line going on just his second attempt.  Shortly thereafter, they started me on IV fluids and ran about 2 liters into me in the span of 3 hours.  The doctor also ordered an x-ray, looking for signs of an obstruction but, as with the CT earlier in the week, it came back negative.

This did make a noticeable improvement in my condition but I was still extremely fatigued and spent most of the time with my eyes closed, answering questions when I had to.  As the second bag was finishing, the ER doc said they would admit me and we took a ride up to the oncology floor of Penrose Hospital.  Again, I kept my eyes closed as we made the trip and it was a bit like a surreal amusement park ride as we started and stopped, waited for doors or people and made sudden turns in a new direction while going up and down various ramps.

I slept the night away and woke Monday morning, feeling enormously better.  Of course, that is just getting lots of sleep and actually becoming normally hydrated for a change but it felt better and I actually looked quite a bit better as well.  Stephanie returned, feeling a bit refreshed as well and let me know that I did look much better than the previous night's 'death warmed over' appearance.

So, in comes the doctor from my local oncologists' group to chat about what is going on.  His theory is that my obstruction is not mechanical as in there is nothing physically blocking the way.  What he thinks is going on is Ileus but he actually used air quotes when he gave this diagnosis.

To understand this diagnosis, you need to understand a bit about how your gut works to digest the food that you eat.  The bowels work by slowly squeezing food along, extracting nutrients as it passes and adding enzymes to break it down.  This is called peristalis and you can think of it a bit like stuffing sausages.  The way your hands squeeze the casing (intestines), moves the sausage meat along is similar to how the intestines squeeze the digested food along, advancing towards the rectum.

His theory is that my intestines, after all the surgeries may now tend towards getting confused about how to perform this process and/or may go to sleep, not bothering to move the food along.  Once they do this, it is like trying to stuff sausages by only pushing on one end of the casing.  It just isn't going to work and is going to behave like an obstruction.

So, we have started a liquid diet and I do have some faint bowel noises and am starting to pass some stool again.  Today, they have moved me to a full diet and will continue to monitor me and how I pass the food.  I have been taking anti nausea medication which has helped some and it may be a part of my continually expanding list of medications now.

For me, the big concern is the future.  Will this happen again?  Possibly.  Is there anything we can do at this point to prevent it from happening again?  Most likely not.  What do we do when it happens again?  Same deal, hospitalization until I can tolerate food again.  Eventually, it may come to a point were my bowels simply never start working again and I may have to go on TPN at that point for the rest of my life.

As to the short term future, I hope to be released from the hospital in the next few days and then will start getting my strength back and returning to work and play.  I will update again when I get out and want to say thanks to all the well wishes I have been receiving.  Hope to see all of you soon!

How quickly Grossly Stable turns Critical

For months I have been sitting in the world of grossly stable.  My kidneys have not changed, my cancer has advanced but not changed, my lungs have not accumulated any more fluid, and my hockey game has not improved.

Last November I went skiing with my two sons, staying at a Keystone hotel where we won two free nights stay.  The afternoon of our first day, I got quite sick and then it continued through the next day, preventing me from skiing for 1.5 days.  Later that month, I had another instance that felt quite a bit like an intestinal obstruction (extreme stomach cramps, vomiting, lack of appetite, delayed evacuation of stomach contents) but those went away and we forgot about the incident.

Over the next few months, my appetite was somewhat limited and, after many meals, I would belch continually with the taste of stomach acid/bile coming up frequently.  Occasionally, this would get to the point of causing me to vomit but it was somewhat infrequent.  Towards the end of February, things began to increase in frequency and we began to have suspicions of another bowel obstruction.

Carcinoid Cancer generally does not invade organs but tends to glom onto their outsides and causes mechanical issues as opposed to consuming organs (the liver is an exception here).  What it has done to me is attach to veins, arteries, and intestines, interfering with their function.  For my intestines, this causes them to bind up and kink, preventing stool from passing.

This tends to reveal itself as extreme abdominal cramps, vomiting, weight loss, lack of appetite, and delayed evacuation of stomach contents.  I have been experiencing most of these and they have been coming to a head this second week of March.  On Wednesday, I had a CT scan to try get a look at my bowels and determine the extent of the obstruction.  Unfortunately, it was negative for an obstruction which is extremely perplexing, given the match of symptoms and prior experience with bowel obstructions.

So, this leaves us in a funny state.  I don't know what is causing my symptoms.  I don't know when they will alleviate.  I don't know what to do at this point.  I will have an appointment with a Gastro Interologist next week but don't know if I will make it to that point.  I may be going to the ER sooner than I see the GI doc if I am unable to keep any food or water down if only to get some IV fluids

So, I am going to go out on a limb here and make my diagnosis.  Of course, I am not a doctor but I think I have a reasonable theory.  If nothing else, it will be interesting to find out how wrong or right I am!

What we know:  I am unable to keep food down.  I have abdominal cramps.  I often throw up a large amount of bile (~400ml) in the morning even when going to bed on an empty stomach.  I frequently have a significant amount of bile in my stomach.  I have a loss of appetite.  My CT does not indicate a bowel obstruction.

My current theory is that I have an obstruction in my descending duadenum, just past the point where the bile duct enters the small intestine.  An obstruction at this point would cause the bile to back up and would result in the bile refluxing back through the pylorus into the stomach.  An obstruction at this point would also prevent me from eating and the inability to digest food would lead to the decreased appetite.  A slowly advancing obstruction would match my slow increase in symptoms over the past few months.

Finally, we have the negative CT scan.  Here is my theory there.  I was scheduled for a a CT one hour after downing the oral contrast.  Due to a breakdown in the CT machine, my CT was about 2.5 hours later rather than just one hour later.  This time may have been sufficient for the oral contrast to slip past the obstruction, making it appear that there is no obstruction.

Am I right?  I have no idea.  If I am right, I imagine that the only solution is surgical intervention which means a trip to New Orleans if they are willing to take on the challenge.  That would also mean about 8 weeks off of work and may lead to me not skiing on Copper Mountain's closing day for the first time in about 8 years...  Some things just need to be sacrificed.