Perforations are tricksy they are...

After a week of decreasing output, things reversed themselves on the weekend and it is obvious that the perforation has not healed.  I spoke (texted) with Dr. Boudreaux this morning and he wants to delay surgery for a while to ensure that he does not create any more holes while trying to fix this one.  I don't know how long it will be but will be waiting another month to get a status.

While we wait, the perforation is doing less than 200ml/day which is not too bad and we are starting a second round of antibiotics to address the infection.  I start 250mg of Keflex 3x/day on Tuesday and hope that it takes care of the abscess.

We have increased the protein in my TPN to try and increase the healing and reduce the edema that I still have.  We have had to start doing an additional 500ml of saline/day to address dehydration and the protein in the TPN may help push the fluid out of the tissue and back into the veins.  If we can achieve that, fluid can then be addressed through diuretics and my unhappy kidneys.

Obviously, this delays recovery more and more.  I don't know what we would do if we didn't have such good health and disability insurance, not to mention a company that is just phenomenal.  Keep me up to date as to what is going on in your worlds and I will continue to update you as to what is going on in my little fishbowl.

Perforation healing?

On July 16th, it was definitively determined that I had a perforated bowel that formed a fistula through the surgical scar.  At that time, it was leaking quite rapidly, putting out several hundred milliliters a day and we captured the output in an ostomy bag which has been difficult to get right.

On August 5th, we addressed an abscess that formed on the left side of the incision and was incredibly painful to the touch.  It ruptured through a different place in my surgical scar and we spent the morning at the doctor's office, draining the abscess and then extending the current ostomy bag to cover both the old fistula as well as the abscess drainage location.  I started on antibiotics to address the infection and am hoping that it heals.

We had scheduled surgery for August 24th in NOLA to repair the perforated bowel but it may be healing on its own.  The amount of drainage has dropped significantly and we are just going to start monitoring and watching it for now.

This puts us in a funny place.  Surgery was not something we wanted but it was a time and place on which we could focus.  Wait and watch is not a fun place to be but it looks like that is what we have to do at this point.  I imagine we will be doing another CT with oral contrast at some point if only to see if it has healed or if the contrast goes into my abdomen or not.

I am still getting about 1900 calories/day from TPN and we just increased the amount of protein that is provided, hopefully to encourage some of that healing.  I am getting a bit dehydrated and that is frustrating because I am also retaining fluid.  Hopefully the increased protein will help strengthen my blood vessels and reduce the amount of fluid that weighs down my body.

I have the G tube connected to a drainage bag 24/7 and look forward to being able to eat something at some point without watching it go directly into the bag.  I have sampled watermelon and grapes using the chew and spit method but was surprised at the amount of seeds and pulp that I still swallow.  We have a new Vitamix, just sitting there, waiting for me to be able to use it and we will be freezing some fruit that I can use in it when I am allowed to really eat.

I have no idea what this means about my recovery as my legs get totally exhausted after a short 3/4 or 1 mile walk.  I can do them but it really beats me down.  I am just going to try and continue to extend my walks and improve as best as I can over the next weeks/months.

Two steps forward, three to the left, one back, two to the left and one back.  At least that is what it feels like.  Hopefully the total output is forward but it is really causing some struggles right now.

Recovery is progressing

I have been home for a little while now and solidly on the path of recovery.  I have been going for walks daily, am up to just over half a mile which is pretty close to my limit and the drainage from the fistula seems to be slowing.  We are struggling with leakage around the ostomy bag that collects drainage from the fistula but we are slowly learning how to manage it.

If this were a normal recovery, I would be quite pleased with how everything is going and would be exploring my limited food options.  We even purchased a new Vitamix before leaving NOLA with the plan of using it to create smoothies, soups and other things I could eat.  As it sits, I am drinking clear liquids of all varieties just for pleasure as they simply drain out my G-tube which is now unclamped 24/7.  It does give some satisfaction but I wish I could do more than just the clear liquids and wish I were getting some calories from them.

The TPN seems to be doing OK at this point with around 1900 calories in each bag and my lab numbers seem to be relatively stable.  My kidney numbers are returning to normal (for me) and my liver numbers are all within normal ranges except for alkaline phosphatase which is high but not the crazy high we had been seeing.

Of course, we need to eventually fix this perforated bowel.  The hope was to do this locally but we have been advised by too many sources to head back to NOLA for the repair.  We don't want to go but at least it will be after Riley and River start off to college, leaving just Forrest home.  We are now looking into how to manage this last little bit.  Forrest may stay with some friends or my parents might come down to help but we don't quite know at this point what we will do.

Stephanie also cannot stay down there for the full time because she needs to be at work as well.  Perhaps she will fly back after I have been stabilized post surgery and come back to NOLA on weekends until I am ready to come home.  I don't know and we haven't really decided on the best path at this point but we will need to make some tough decisions.

Hopefully, the surgery will be relatively quick and easy this time.  We will not be planning a 12+hr marathon to free up the bowels, just get in, reattach, and get back out.  No attempts to remove obstruction, no work on the liver, nothing except repairing the perforation.  That said, a 'quick and easy' surgery for me will still likely be a 6hr affair which is still quite extensive.

Long term, I don't think this is a good sign for the double balloon enteroscopy.  This seems to indicate my bowels are too fragile to handle significant manipulation.  I hope there still is a chance but honestly believe it is not likely an option at this point.  I know it likely means I won't ever eat again but I am slowly coming to the point of acceptance.  I still crave food and I desire eating again but I will find a way around it.  If I am at least able to do clear liquids, that will help a bit with the social aspects but it will still be hard.

Home again, again

I know I have been delinquent in posting but I have had a lot to process and it is difficult to know what to say.  Obviously, there is major disappointment at the failure of surgery in NOLA and trying to understand what that means for the future has been consuming.

We are home now with some odd plans let me bring you up to date.  Surgery failed and there is not a chance of trying again.  Dr. Boudreaux said that this is the first case in fifteen years that has stopped him.  My bowels are simply too encased in adhesions and too fragile to try again and he took it as a personal affront that he was unable to repair me.  My problems are no longer directly cancer related and there is no cancer cure that could be developed to resolve the bowels.

We did leave NOLA with a remote possibility: a double ballon enteroscopy.  This is a procedure similar to a normal eteroscopy but the use of an inflatable balloon allows the scope to inchworm its way deeper into the bowel.  This could allow the placement of stents if the obstruction is found or dilation with the balloon to free up the bowel.

It is a fairly new procedure, introduced just in 2001 and there are doctors in NOLA and in Denver that perform this procedure.  The downside is that adhesions and a fragile bowel can prevent performing the procedure which means no one may be willing to perform it on me.  It can also be done from both ends of the digestive tract so we would probably do that to reduce risk if we can find someone to do it.

So, Thursday, home with a plan to begin investigating this in a couple of months while I recover from this surgery.  Friday, I was feeling weak and had some serious stomach cramps building but I chalked that up to the travel the day before and a poor nights sleep.  Saturday morning started with more cramping but I am used to that with the obstruction but then I felt nauseous and went to the bathroom with dry heaves.  When I stood up, I noticed that the the front of my shirt was wet.  Looking inside, I saw that fluid was coming out of my belly.  Not good.

We quickly gathered things and rushed to the ER and were excited to see that the parking lot had lots of spaces meaning we were guaranteed of being seen quickly.  We got back into a room as I continued to ooze and spurt from my incision which had dehisced.  After two CTs, one with oral contrast, we verified that my bowel had perforated and that it was then coming out the small opening in the incision.

Fortunately the perforation was 'contained'  What this means is that the output of my small bowel is contained to a small area of my abdomen and then it found the weakest point and broke out the incision.  I have continued to drain a large amount of fluid which is very green in color, looking very much like the stuff that had been coming out of my PEG tube and out of the NG tubes I have had.

Dr. Mathis consulted with Dr. Boudreaux and they believe the best course of action is to allow the bowel to head before going in for surgery to repair the perforation.  So, the plan is to take the next 5 weeks at home, allowing the wound to drain and the bowels to become a bit stronger than their current wet tissue paper condition.  At that point, we will have to do another surgery to repair the perforation which will not likely heal on its own.

What does mean?  Obviously, it delays things significantly again.  Surgery is going to be difficult but I am tending to having it here rather than NOLA.  This may give even more indication that the double balloon enteroscopy should not be performed.  I have no idea what it means for the future.  I don't know what surgery will bring and I don't know what it means for our plans.

unsuccessful

Sorry for the lateness of this post but I have been having a time gathering my thoughts.  I had surgery on 6/23 and it did not go as planned.  The scar tissues (adhesions) were extensive, making my intestines look like a brick of flesh.  Any cut that was made was a significant risk and I would even start bleeding from areas that they weren't even touching.  I am inoperable when it comes to freeing up my bowels from their obstruction.

We are considering some alternative solutions.  First, a Baker's Tube was inserted through the old G-tube hold and the hope was that this would work its way down my bowels, indicating where the obstruction is at and, perhaps freeing it somewhat.  Well, that tube pulled back out Monday after surgery, having done nothing.  We reinserted Tuesday but it is just sitting in a coil in my stomach right now.

I still have an NG tube and Dr Boudraux was that in7-10 days past surgery to make sure the walls of the bowel have repaired themselves.  We are considering putting some radioactive dye down the baker's tube and trying to follow where it goes.  If we can identify strictures, we could theoretically put a stent in place to make things better.  We have also discussed haveing a surgery where they try pushing the backer's tube into place for similar reasons but that idea has not been very well developed.

Basically, I expect that I will be coming home no worse than when I arrived other than the additional surgery recovery.  The good part is that I am obviously not dead but the bad part means that there is little hope for the future of my intestines.  I don't know of many more tricks that could be employed to address the lack of eating.  I also don't know how much longer my body will really tolerate the TPN which is necessary to just keep me alive.

Basically, the countdown has started. I have been able to live a live for the past 15 years that has mostly ignored my disease but that is an will no longer be the case.  There are no magic treatments nor any new FDA treatments on the horizon that can address a bowel as scarred as I have.

Sorry for the ending note but I have always pledged to be honest in my assessment of my outlook and my future.

We are a go for Surgery on 6/23

For about 7 months now, I have known that this day was coming and it looks like it is finally here.  We met with Dr. Boudreaux today and it is obvious that he doesn't want to do this surgery because of the risk of post surgical problems and my physical weakness going into it and I agree with his assessment.  Of course, we are getting our hand forced because my body just isn't doing well on TPN.

Dr Boudreaux's first goal is to get me to eat.  His second goal is to get me to eat and his third goal is to get me to eat.  I have three other areas of concern:

1. Tumors wrapped around the ureters.  These will be addressed at the end if everything else has been handled and he has good access
2. Tumor near the rectum.  Currently low priority because it is hard to get to and the full solution is not tolerated well when you have a significantly malnourished patient
3. Tumors in Liver.  These may get addressed as the MRI seems to imply a few large masses that are easy to get to and could be removed without much risk.

This plan works for me.  Getting me to eat gets me on the path back to where I am strong enough to potentially tolerate some of these other procedures.  Whether or not we do these other procedures is another question but all of that requires a higher level of nutritional sufficiency and to get there, I need to eat.

This is not to say that there have not been curveballs on this trip.  We flew out of Colorado Springs, connecting through Dallas/Fort Worth to Baton Rouge.  As we were pulling up to the terminal in Colorado Springs, I got a phone call that the flight to DFW was being delayed by 2 hours which ate up most of our three hour layover.  By the time we got to the gate, the delay was 2.5 hours and then became a 3 hour delay when they gave up on the plane and got another one along with a new crew since they timed out as well.

Of course, our connection was now blown so they gave us a hotel in Fort Worth and we stayed the night.  They were all out of their 'normal' hotels and wanted us to find our own and then mail in for reimbursement until Stephanie started getting argumentative and, what do you know, here is a hotel!  Well, we stayed the night and then flew out Tuesday morning, hitting NOLA just one hour before our clinic appointment.

I have also had some issues with my G tube over the past week or so with bleeding and a little irritation at the site.  The pain grew tremendously this last weekend to the point where I was taking 20mg morphine as soon as it was allowed on my prescription.

When we got to Baton Rouge and got our luggage, I went to change the dressing on the G tube and it was obvious that the balloon that was supposed to hold it in place had deflated some and it was coming out.  So, the pain was due to the opening being forced open more than it should.  I was able to push it back in and then tape it in place and the pain has been mostly abated.

The final curveball is that they are just going to admit me to the hospital today.  Then they will re-inflate the balloon properly and get me started on Sandostatin right away to try and reduce the risk of Carcinoid Crisis.  Stephanie will stay the night at the Hope Lodge and then stay the night in the hospital room Wednesday night before the surgery on Thursday.  Dr. Boudreaux is on call this weekend as well so it is nice that he will be available.

Starting Thursday, I won't be able to post for obvious reasons so I will refer you to Stephanie's caringbridge where she will be posting updates.

Little over 2 weeks to Surgery!!!!

I got a stunning phone call from Dr. Boudreaux's office this morning making sure that I was all set for my upcoming surgery.  I stammered for a bit, not really knowing what to say because I didn't know I had an upcoming surgery but was excited at the thought.  Well, I have surgery scheduled for June 23rd, probably at 8am with a clinic visit on June 21st.

Wow.  Just Wow.  I had feared that this day would not come.  I was planning for it but a significant part of me believed that it just may not happen now matter how hard I wished and hoped.

Well, now it is coming.  In two weeks we will be on a flight to Baton Rouge out of Colorado Springs on our way to the next chapter in our lives.  We meet with Dr. Boudreaux and the anesthesiologist on Tuesday the 21st with a 1:00 appointment (I expect we will actually see him about 2:30) and then spend another two days waiting for the morning of the 23rd.  I expect this will be a LONG and extensive surgery.  If it is less than 10 hours, I would be very surprised and 14hrs is my guess as to the length of time it will take.

I hope to come out of surgery non intubated but, if I am, I have a request to be sedated because the true days of insanity I experienced last time are almost unbearable.  Those days still frighten me to this day.  By the 30th of June, I hope to be out of the ICU and up on the main floor.  Hopefully, around that time, I will be allowed to start the progression of the liquid diet through full liquids and then unrestricted.

What this means is that I may actually be eating by the 4th of July and maybe coming home later that week.  It seems to close now.  I just had a celebratory otter pop (poncho punch) and can just imagine having real mashed potatoes, corn on the cob and watermelon where I don't have to spit out the pulp.

So, my wish list for food?  It is fairly broad and some things may seem simple or ordinary but I look forward to much of that.  I look forward to the simple pleasure of guzzling a soda or grazing in front of the pantry or fridge.  As to the actual list, here you go (I also will take suggestions for things I missed!!!!):

Items with an asterix are things that we can/will make at home.

• Brunch someplace
• Chipotle chicken fajita burrito
• Chipotle crispy chicken tacos
• Sesame chicken
• Chicken Pad Thai
• Ribeye (medium rare), loaded baked potato and corn on the cob*
• Sweet and sour chicken with basmati rice*
• The chicken kabobs we had last year with grilled pineapple*
• Fresh pineapple*
• Chimichanga (ground beef)
• Big mac, fries, and a coke
• Fried chicken sandwich with lots of mayo
• Lobster
• Crab
• Shrimp
• Firehouse subs
• Bbq ribs at Bird Dog BBQ
• Rocky road ice cream
• Snickers blizzard
• Enchiladas (cheese, chicken and ground beef)
• Breaded schnitzel
• Pizza.  New York style, deep dish, Beau Jo’s amongst others...
• Popeyes fried chicken, mashed potatoes and gravy
• Steak diane*
• TGI Friday’s Jack Daniel’s steak and shrimp
• Experiment with cooking different kinds of mushrooms*
• Sea Scallop Risotto at Biaggi’s
• Wings (Try Alton Brown’s good eats method)*
• Cotton Candy grapes  (In Sprouts August/September.  Just want to try them)
• Salad with candied almonds and mandarin oranges*
• Grilled pork New Orleans with twice baked potatoes*
• Las Vegas:

• Bobby Flay’s Mesa Grill
• Joe’s Seafood, Prime Steak, and Stone Crab, maybe for lunch
• In and out burger
• Hash House a gogo (breakfast)
• Original Pancake House:  Dutch Babies, pigs in blanket, strawberry pancakes.
•  Chicken fried steak, mashed potatoes and corn (Cracker Barrel maybe)
• Tacos*
• Watermelon
• Fresh strawberries and vanilla ice cream
• BLT with extra bacon*
• Lasagna*
• Cuties
• Beer, cheddar, and bacon soup*
• Donuts!  There are two new donut shops in Colorado Springs area and I want to try them
• Philly cheese steak sandwich with grilled peppers, onions, mushrooms and cheez whiz.
• English muffin, toasted till crispy with lots of butter and strawberry jam
• Toasted blueberry bagel with lots of butter and cinnamon sugar
• Blueberry muffin with lots of butter
• Macaroni and cheese with applesauce
• Taquitos
• Olanthe sweet corn on the cob with butter and lightly salted
• Churros
• Tortilla chips and salsa (perhaps the pico de gallo that Steph makes) but Chilli’s has great chips
• Roast beef, cooked for hours with mashed potatoes, gravy, yeast rolls, and glazed carrots*
• Jersey Mike’s Italian sub
• Tamales with green chili
• Hot buttered popcorn
• Red Robin Bleu Ribbon burger
• Red Robin Whiskey River BBQ burger
• Apple hand pies and Blueberry hand pies.  Fruit empanadas essentially. Frosted
• I want to try duck
• Grilled tunafish sandwich with a dill pickle, chips and french onion dip*
• Egg salad sandwich with crisp lettuce
• Corn dog.  Perhaps the mini corn dogs at Buffalo Wild Wings.
• Perhaps an afternoon/evening with lots of sharables at Buffalo Wild Wings…
• Potato skins*
• Rootbeer Float*
• Roast beef, pepper jack, dijon, lettuce, tomato, mayo, red onion, banana peppers, on onion roll
• Pancakes, bacon and sausage