Surgery tomorrow? Not quite...

It has been a rough two weeks since my last post simply because I am getting worn down from the hits.  I have not been eating anything other than small sips of water in addition to the 2liters of TPN.  My last 'food' was probably the Strawberry Jello snack I had on my birthday, May 17th.  I tried eating one more time after that but my digestive tract had other ideas and the food came back up.

The blockage is certainly becoming more severe.  I have had some stool movement (VERY watery with suspended material) so part of the intestine has been starting to decompress.  Unfortunately, I am not in a position for surgery quite yet.

Dr. Boudreaux felt my abdomen and said it felt very blocked and scarred.  Laying flat is difficult from the tightness and there are places where it is quite painful when he presses.  Definitely obstructed and definitely in need of surgery but he needs me to improve in two ways.

First, he wants to insert an NG tube (I had one of these back in April of 2012 and they are damned uncomfortable to receive when conscious) to try and relieve some of the pressure on the bowel from the top side.  This will make it easier to manipulate and safer for me and the surgery.  Second, he wants to continue the TPN as well as start some additional shots to try end encourage protein usage.

The long and short of this is no surgery tomorrow.  I had been counting on this for weeks now and keeping it in my sights as a day of relief but we are putting it off another week.  I will be hitting the ER tomorrow and then transferred to a room for a week of in patient NG tube and TPN until surgery the follow Wednesday, June 2nd.

There is a funny symmetry to 2012 in that in 2012

• we came down on Memorial day (check)
• had clinic on the day after memorial day (check), 
• surgery on 5/31, 6/1, and 6/2.

I guess it only made sense to delay surgery to 6/2 to maintain the symmetry to 2012...

I am losing it.  I am at my limit and beyond with this last sequence.  Have you noticed how many commercials are about food?  Have you realized how much of social life revolves around food?  I feel somewhat like an outcast with my inability to eat and my hunger cannot be satiated.  I feel run down and tired and am having a hard time just going day to day right now.

At least the NG tube will stop the vomiting.  At least the surgery is coming (although I said that before).  At least I have my beautiful wife at my side.  At least I have made it long enough to see my first born graduate high school.  I just need to get past this mountain I have in front of me.

Surgery is planned!

I said this back in May of 2012 and November of 2012 and we are back here again.  Surgery is a GO!  I have been sitting on pins an needles since yesterday morning, both dreading and excited for a call from New Orleans.  Finally, at about 3:00, I got the call and they believe surgery is reasonable to get me eating again.  Interestingly, in May of 2012, we went to clinic the day after Memorial day just like we are doing again here is May of 2015.

We will be going to clinic on 5/26 at noon and will be admitted to the hospital after my appointment, preparing for surgery on the 27th.  As with prior surgeries, this caries a significant risk of carcinoid crisis but there are few better equipped to handle this reaction that Dr. Boudreaux.  I am sure there is a significant chance of losing some bowel because it is so scarred but, when all is said and done, I should be able to eat.

Starting to eat will come slowly because my intestines will not be used to large volumes of food and my stomach most certainly has shrunk some but I will eat normally again!  My food dreams will be addressed and I will be able to participate in so many social settings that revolve around food.  Right now, I would even look forward to some of the bone-in charcoal ribs that Rob DeLine made for a get together at his house years ago!

Long term plans?  Surgery on the 27th means that the first of August is 9 weeks off.  That will be my target for returning to normal life (hockey, work, and normal play).  Ski season is obviously in no danger and I am looking forward to making up for the season truncation I experienced this year.

Metron graced me with an Amazon gift card and I have over a dozen books to read which will fill up my time.  I appreciate all the book recommendations from everyone and certainly have a variety of new reading to do.  One (H is for Hawk) was just finished and is a book that I would not have picked up without a recommendation and was a good read.

Food dreams

I had forgotten what it was like back in 2012 when I was on TPN before.  I don't recall desiring food so much and it is really wearing on me this year.  I can do full liquids fairly well but only in small quantities (1-2 ensure's per day, some jello, pudding, or a shake).  I find my stomach filling up with bile many times because the backed up intestinal track just doesn't let anything pass and I don't have a gall bladder to 'dole out' the bile when necessary.  This often forces me to vomit several hundred milliliters of the foul liquid, sometimes several times a day and does not lead to a happy Ron.

I think of salty, crunchy food often.  Crispy tacos, popcorn, nachos, and chips and salsa.  I think about the crunch of the skin of deeply fried chicken like that from Popeye's or KFC.  Regular potato chips and french onion dip sounds wonderful and my mouth waters at the thought of the salt from the chips as it merges with the flavors of the dip with that wonderful crunching sound.

Steak.  Delicious, grilled, thick pieces of steak.  A deeply marbled piece of ribeye, medium rare that melts in your mouth, barely requiring you to chew but the act of chewing is completely rewarding as well.  I think of the baked potato beside it, overflowing with butter, sour cream, bacon, chives, and shredded cheddar cheese.  Again, salt with a number of mingled, complimentary flavors.

I normally wouldn't put a salad in here but, again, the crunch of the lettuce along with a wonderful bleu cheese, ranch, or basalmic vinegrette.  No salad is complete without crunchy, fresh croutons and some shredded cheese.  I remember a bleu cheese wedge I had at the Red Fish grill in NOLA about 10 years ago that was absolute stunning and I dream of having that salad again.

French fries.  Particularly McDonald's french fries.  There is something about the way they taste and crunch in your mouth when they are fresh and hot out of the frier with their light coating of salt.  Other food at McDonald's, I can take or leave but their fries are wonderful.

Crab with lots of clarified butter.  Cracking open the claws with the large chunks of meat inside and then dipping them in the butter for a little taste of heaven.  We don't get it often and it is never fresh here in the middle of the country but it is luscious all the same.

Chipotle.  There are two different things I order at Chipotle:  A chicken fajita burrito with mild and chili-corn salsa, white rice, cheese, and sour cream.  This is perfect when I can't eat it right away and the melding of the flavors is awesome.  The sweetness of the corn, mixing with the heat of the chilis along with the slight char on the steak is heavenly.  When I eat at Chipotle, I generally get the crispy chicken tacos, again with mild and chili-corn salsa, cheese and lettuce and the crispiness of the shells is always remarkable and the rest of the flavors put me in a bit of a happiness coma.

A ground beef chimichanga, fried with a crispy shell, smothered in green chili, lettuce, and sour cream is another thing I am looking forward to.  The heat of the chili is tempered by the coolness of the lettuce and the tang of the sour cream.  The meat filling, along with more cheese, grilled onions adds another dimension of flavor that I miss terribly.

So many other foods.  Chicken Parmesan, sesame chicken, Stephanie's delicious sweet and sour chicken, Five guys hamburgers, Jack Daniel's fried shrimp at TGI Fridays, Hot wings.  The list goes on and on.

I love donuts but they are not high on my list right now.  Savory is most of what I crave.  I grow tired of the sweet chocolaty flavor of ensure and the sweet sameness of Jello (Jello brand is better than Jolly Rancher brand).  I occasionally get some cream of chicken/mushroom soup but, again, the sameness is overwhelming.

Hopefully soon.  I hope to find out tomorrow if Dr. Boudreaux believes he can help and we can then plan for the surgery.  Soon after that, I will get food.  I will get my savory.  I will have my flavors.  I know it is going to be slow going at the start but I know I will be able to eat and not worry that it is coming back up an hour later.  Soon. That is what I keep telling myself.

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!