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.
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