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!