Maybe I was right afterall

6 weeks ago, I suspected a small bowel obstruction when I finally when to the hospital in mid March.  I had almost all the symptoms I had previous experienced with two prior small bowel obstructions except for not as severe of cramps as the first time.  For a week in the hospital, I was told that that is was probably Ileus, just a 'standard' sleepy or uncoordinated bowel with no real explanation as to why it could happen spontaneously nor any real hope for the future.

We then hooked up with a GI doc who suggested other possible diagnoses and we proceeded to work through them, one at a time, trying to rule out reasons for poor behavior of my digestive tract.  At least this was active diagnosing.  Putting forward a hypotheses and then using non invasive testing to determine if the hypothesis was correct.

His last test was called a small bowel followthrough test and it is really quite simple.  You swallow a barium solution and they take an immediate x-ray to see it in your stomach.  They then x-ray at 15 minutes, followed by a series of x-rays at 30 minutes to track the progress of the barium through your digestive tract.  Given you start with eating nothing for 8hrs previously, it should make it through your digestive tract in about 1-1.5 hours but I knew ahead of time that I was in this for the long haul.

At 3hrs, they extended it to 1hr intervals and, at 5 hours, they did real-time imaging and had me swallow some more barium to apply some pressure.  Finally, at about 7hrs, they sent me home with the barium never reaching the large intestine.

Upon reading the report this morning, I see: "Under real-time fluorosciopic imaging, significant small bowel tethering is noted with basically fixed, variably dialated small bowel loops".  In the Opinion section, he continues "1) Significant small bowel obstruction with non traversal of the small bowel, despite greater than 6-hour evaluation...".  I did finally pass some barium that night, 10 hours after the initial dosing.

I am fairly certain that what this means is that I WAS RIGHT.  8 weeks ago, I suspected small bowel obstruction.  7 weeks ago, I started warning some of the doctors I see regularly, and 6 weeks ago, I was finally hospitalized.  The obstruction must have loosened somewhat in the hospital because I could eat small amounts of food but it quickly clamps down again, causing yet more vomiting.

This makes me incredibly angry.  6 weeks ago, I knew this was what was going on.  6 weeks ago we could have been already starting on the true path to recovery.  I could be recovering from surgery right now rather than enduring the continued weight loss and misery.

I don't wish for surgery, I know that it is not all fun and games and am already dreading having an NG tube inserted for days.  I know there are grave risks with surgery but I know that a successful surgery leads to a much high quality of life for me.  At this point, surgery is probably many weeks off (assuming this report is believed) and we lose much of another summer.

We still need to contact the doctors in New Orleans and have continued to keep them abreast of results up here.  They should get these results tomorrow but I know Wednesdays are Dr. Boudreaux's surgery day so he may not do anything for a couple of days yet.  So, flights to NOLA are in our near future and, hopefully, rescue from my current situation.

Back on TPN again

Several things to update since my last blog post but the biggest change is that I am now on TPN once again.

Let's start off with where we were a week ago.  We had performed an ultrasound and that had some disturbing results.  They saw the celiac artery was cut off by 60-70% and the celiac artery's main function is to feed the stomach and the spleen.  They were also unable to image the superior mesenteric artery (SMA) whose primary function is to feed the small intestine and supplement the celiac artery's feeding of the stomach.

At that point, we planned on getting a PICC line, starting TPN and getting a Magnetic Resonance Angiogram (MRA) of the abdominal arteries.  The PICC line would allow me to get nutrition through TPN and the MRA would give a much better image of the abdominal arteries, hopefully identifying that SMA and seeing any other restriction.  So, I was scheduled for a PICC line on 4/14, TPN on 4/15, and a MRA on 4/17.

Well, around 2 hrs before the PICC line was to be inserted, the nurse that was to perform the procedure let us know that she still did not have approval from all of my doctors.  Another hour later, she called again, saying she still could not get ahold of my vascular surgeon and we started talking a bit.  The nurse discovered that I was near dialysis and said that they had a cutoff of creatinine above 3 for installing a PICC line so a PICC line was out of the picture and TPN was also going to get put off.

I then spoke with my GI's nurse and she said we would go for a central line which is a more involved procedure.  After some effort, she was able to get a central line scheduled for 4/16 at Memorial and we were back online again.

I got the central line installed with a port just beneath the skin on my right chest after a 45 minute procedure with just twilight sedation.  I had not expected how much it would hurt afterwards and was very happy that I had lots of percocet from prior procedures to help mute some of the pain.

Finally, on 4/17, the nurse came by and we got the TPN started with a rate of 1200 calories per day to begin.  As time goes on, we will hopefully be increasing the calorie count until we get to a much higher level, putting some fat and meat on my bones in addition to nutrition that I get orally.

Now, about that MRA.  We had the scan this morning and I just got a copy of the report and it is both good and bad.  The gross results is that there are "Widely patent mesenteric arteries".  So, this is new terminology to me and, from what I can understand, that means that they saw absolutely no decrease in blood flow in any of the mesenteric arteries on the MRA.  If anyone out there knows more, please let me know!

That is good news because it means that I don't need to have surgery to free up blood flow to either my intestines or to the stomach.  It is bad news because it means that we still don't know why I have gastroparesis.  I seem to tolerate a full liquid diet fairly well but am unable to consume a reasonable amount of full liquids to gain weight.  Any solid food that I eat seems to come back up a couple of hours later, even when I am taking Reglan.

So, I am going to stay on full liquids for a little while again and then try re-introducing solids with the help of Reglan.  Will it be successful?  I have no idea.  I do know that I will at least stave off this weight loss with the combination of TPN and full liquids.  I just don't want to live the rest of my life without putting my teeth to good use!

Progress of a sort

I continue to lose weight but we are making some progress in other ways.  I had an abdominal ultrasound of the major arteries of the abdomen yesterday and we have some useful information off of that.  They determined that my celiac artery was pinched off by 2/3.  The celiac artery feeds the stomach and could lead to a sleepy or paralytic stomach.

They also were unable to locate the superior mesenteric artery which feeds both the stomach and most of the intestines.  If this is pinched off, then the stomach will be severely impinged and this would lead to significant problems eating.  Also, it would lead to abdominal cramps and a dying off of the intestines.  This has happened before but they addressed it in 2012 without losing any of my intestines.

So, we are going to get a MRI Angiogram which will give a definitive 3d picture of the abdominal arteries and let us know exactly what is going on with them.  If we have significant pinching off, we can address them in the short term with stents and then can begin investigating surgery to clean off the tumors.

Additionally, we are going to start TPN again.  Probably on Monday, we will get a PICC line installed in my right arm again and then I will be hospitalized the next day to start TPN in the hospital before going back home the following day to continue TPN here.  TPN will provide me a significant amount of nutrition, stopping my plummeting weight (down to 144 pounds on my 6'3" frame).

It is not a lot but it is a small amount of forward progress.

Weak

I hate feeling weak, I hate being weak and I hate appearing to be weak.  All of these are true of me right now.  Let me catch you up:

On 4/1, I had a gastric emptying exam.  For this exam, you eat nothing for 12hrs prior and then eat a small amount of easily digestible food, laced with a radioactive marker (technetium in this case).  They then scan you for about 2 hours, watching the food pass from you stomach and into your small intestine.  For a normal person, about 50% of the food should have left the stomach within the first 90 minutes but, at 100 minutes, we had to stop the test early because I had to vomit.  At that point, 2% (essentially nothing) had passed into my small bowel which gives a fairly confident diagnosis of paralytic stomach.

So, that afternoon, we met with the GI doctor and he started me on Reglan which  should help stimulate stomach activity and I started taking it that evening.  4/2 went well and then, on 4/3, I had my regularly scheduled bilateral stent swap.  The stent swap was successful but it is getting harder and harder for the urologist to fish that stent up my right ureter, taking almost a full hour this time.

Food did not go well that day nor did it go well on Saturday with my vomiting a large amount of bile and/or stomach acid on Saturday afternoon.  Sunday was a good food day with me getting about 1600 calories but today (Monday) has been a down day with my target being about 1300 calories by the time I finish tonight.  For someone of my height, I should be eating about 2000 calories on days when I do absolutely nothing and need to be significantly above that to increase my weight and strength.

We are giving the medication until Wednesday and then will contact the GI doc again about either other medication or starting me back up on TPN which I had 2 years ago.  At least with TPN, I will be able to regain some strength and calories with both TPN feeding as well as some oral feeding as well.

For now, I am trying to do as little as possible and trying to eat whatever I can, whenever I can tolerate it.  Seems odd, being an American, and having trouble eating.  This is certainly a diet that I do not, under any circumstances, recommend.

I am keeping somewhat intellectually stimulated, working on my pet personal project of a thread based optimistic simulation engine and actually have made a lot of progress since I left it behind after my recovery in 2013.  It has been fun learning new features of C++, Boost, and finding cool ways to make some awesome templates.

I have watched some movies I missed, seen some bad TV and taken a bunch of naps.  I would MUCH prefer to be out and about, back to work and play but that is not going to be for a while unless we can solve this food issue.

Thanks for the well wishes and I hope to see all of you soon!

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.