Endoscopic Procedures #2, #3 amd #4,Trying to seal my abdominal PEG site fistula, and a saga to try my sanity

So I would like to say that my first endoscopic procedure on June 30 to stitch up the fistula left by my PEG removal, was a success. I would like to add that six weeks of disgusting and smelly emanations had finally come to an end, and I could start the enjoyment of my favorite season of the year.  But, if you read the title of this entry, you already know that I can't say any of those things,  and so, by July 2,  I was once again a very unhappy camper.  Oh sure, I was doing the "happy dance" until about the morning of July 2, when I realized that the oozing site was more than just a healing process.  I emailed both of the GI doctors in despair.  I had no intention of repeating the uncomfortable experience again.  My throat was sore from having a tube going down it,  into my belly.   And contrary to the anesthesiologist's promise that I probably would remember little to nothing that happened on that table,  I remembered everything.

So I was not thrilled a few days after the first endoscopic procedure, to be headed for a repeat.  Once again, I was promised that they would make me "as comfortable as possible" and I wouldn't remember.  So, imagine my disappointment when I was awake again, and remembered that this time, a slightly wider tube was shoved down my throat.   When I came home, my throat hurt as much as my 1986 bout with strep,  during which I went through every flavor of Ben and Jerry's ice cream: from Chocolate Chip Cookie Dough and Cherry Garcia to Chunky Monkey. I suffered through two full days of excruciating throat pain, but thought it was worth it if my stomach leak would finally stop.  Well, after two days, the throat pain subsided, but the leak resumed.  The doctor had told me she sewed extra and stronger stitches, and she was sure this would "do the trick"

So, with the misery of endoscopy #2 fresh in my mind, I bravely agreed to endoscopic procedure #3.  I figured if I had survived the first two, I could survive a third.  I joked to one of the nurses that there should be "frequent endoscopy" points that I could redeem for a free stay, and I told the doctor that perhaps we should pitch a reality show, or create a franchise like The Hunger Games or Star Wars.  She assured me that this time, she would use a special clip and of course, even more and stronger stitches than the first two times.  This time, I was given more sedation, and was told the tube going down my throat would be smaller and wouldn't hurt my throat as much as the time before, and the time before that.  I didn't remember as much of the procedure as the previous two times, but I did remember being instructed to swallow the special clip, which I did with a huge gulp. 

The doctor was confident that the third time was the charm.  And it was -- for two days.  So we could be doubly sure the stitches would hold,  this time I stayed on clear liquids for the rest of that day and liquids the whole next day.  After a 2-day fast, my body was not good at accepting solid food again and the third evening,  I had to have chicken broth, because my guts were in an uproar after a smoothie for lunch.  Before long,  I was going through a box of gauze sponges every two days and canceling dinner plans I had already postponed a couple of times.  There was no way I could leave the house; within hours of changing a dressing, we had to change the gauze and tape again.  My skin was raw from the tape until I ordered a special product for sensitive skin. Interestingly, for the third endoscopy, I was fairly sedated and, although I remembered most of this procedure -- including the doctor putting a clip in my mouth and asking me to swallow it down the tube -- my throat didn't hurt as much after this round as after #1 and #2.

So, having not been as traumatized after #3,  I was ready for #4.  But this time, I was told the two GI docs were putting their heads together and "thinking outside the box".  Uh-oh,  I thought,  now we're getting creative!!  The next day I was presented with two possible "solutions".  One was a cardiac device used to repair holes in hearts. The other was to put in a small tube and top it with a "Mic-key button".  Both devices would have something showing on the surface of my belly;  the cardiac device would be flatter,  and the Mic-key would have a piece protruding about 1cm [roughly a half-inch].  The downside of the cardiac device would be its permanency -- it could never be removed.  In the end, the docs decided to go with the button, which would have to be ordered and we could do the endoscopy that Friday [we had started our discussions on Monday, July 18]

On Friday, July 22, I was to be at the hospital at 6:30am [!!] for a 7:30am procedure.  Why Accessa--Ride had to give me a pickup time of 4:41 is beyond me, but we woke up at 3:30 and the vehicle was outside in the pitch-black at 4:30am.  We reached the hospital by 5:10am and the Endoscopy Suite wasn't open yet,  but Au Bon Pain was.  So Cheryl was able to have a cup of coffee.  The endoscopy department didn't even open until 6:45, and we had to fill out pages and pages of paperwork for the fourth time!!

The doctor showed me the Mic-key button and indicated which part would be above the belly.  I approved -- what else could I do?  This time, they managed to sedate me enough that I didn't remember a thing,  Miraculously,  there were no food restrictions after the procedure this time, so off we went to the Au Bon Pain where we both had lunch.  So ended a saga that began May11 with the removal of a clogged PEG tube, and concluded four endoscopic procedures, 2 boxes of 600 gauze pads [at $104.00 each out-of-pocket], 3 6-packs of Nexcare trauma-free tape [$36 each], $5 almost-daily laundries, 4 frustrated aides, and a stressed-out and depressed me-- later -- with a bad case of cabin fever.  Mind you, even before this odyssey of grossness, my clogged tube was leaking and smelling for almost 2 years.

Is it perfect?  Not by a long shot.  I still put a single 6-ply 4x4 gauze over the button because it still slightly leaks.  But this is a far cry from 6-8 gauze pads 3 or four times a day and still ruining all my tops.  I can leave the house and wear shirts and blouses pretty close-fitting.  For the first time in years, I can down a smoothie and not worry that most of it will come out onto my belly.  And I can take care of other health concerns and tests -- dental, opthamologist, mammogram and breast sonogram, and thyroid needle biopsy, all of which I have been postponing.

Endoscopy to Close PEG Tube Site-- Call me "Deep Throat"

So on Thursday, June 30, my GI Doctor scheduled me for the endoscopic procedure to finally close my PEG tube site.  To recap,  had a PEG tube since 2005 -- [actually two PEG tubes -- on placed in 2005 and another placed in 2010]-- in preparation for the somewhat inevitable event of my inability to swallow.  In 2005, my ALS was progressing fast and, according to that, my ALS team felt that it was time to place the PEG before it became too risky to go under anesthesia.  In time, my disease progression slowed down and the tube became weak and was replaced in a slightly different site above the first one, in 2010.  By 2014, the second PEG had clogged and it was leaky; stomach acid was seeping out and irritating the skin around the site.  It was also ruining my shirts and blouses with stains and emitting an offensive odor.  My GI doctor and I decided it was time for the tube to come out and let the hole close up.

As I said in my last update, the hole usually closes up by itself in one day, with some of the closure happening within a few hours; and that is why patients whose tube falls out are told to go to the nearest hospital emergency room as soon as possible because, if the hole closes, another replacement tube cannot be placed.  Well, mine didn't closeup, much to my chagrin.  My visions of healthy smoothies and a nice flat belly which would look okay under tight-fitting blouses, were totally dashed.  Seven weeks and an 'abrasion procedure' attempt later, we scheduled an endoscopic procedure to close the hole.

I arrived at the Endoscopic Suite at Weill-Cornell Medical Center [aka New York Presbyterian Hospital] at just past 11:00am [God bless Access-a-Ride whose tardiness had me on edge].  We had to fill loads of paperwork, and thank goodness my 15+ medications are in their computer.  Then we entered the Endoscopy Suite inner sanctum at about 12:15.  The nurses were all cheerful and pleasant.  Finally, my GI doc came in and I also met the GI doc who specialized in my type of surgery. came in.  My first impression was that she looked like a high school cheerleader -- so young!! Anyway, next came the anesthesiology team.  They told me I was high-risk for general anesthesia because off my respiratory problems, a fact with which I am all too familiar.  They would go with a lighter anesthesia and shoot albuterol into my throat to numb it.  I would be awake during the procedure but probably not remember much.

Well, I remember everything.  It wasn't fun but I do remember everybody -- the anesthesiologist, anesthesiology nurse, RN and GI surgeon saying at regular intervals "You're doing well, Fern.  Good job!!"  I'm not clear what the "job" was, except not passing out and not screaming.  All I know is,  I was relieved when I heard them all tell me we were done.

The aftermath was a sore site which bled a little and a very sore throat for about three days.  Oh, and I lost my voice for about the three days that my throat hurt.  All I know is that they told me to restrict myself to liquids only for the next day and I thought back to the days I suffered a strep throat in the mid-80s shortly after I moved back to New York from California and bought the co-op I live in now.  It was a week during a summer heat wave and my throat felt like someone was down my throat sticking needles.  I was skinny then, so I went to the nearest supermarket and got all the lavors of Ben and Jerry's Ice Cream that I loved, including Cherry Garcia and Chunky Monkey and indulged to my heart's content.  Suddenly, thirty years and a much slower metabolism later, I thought about Ben and Jerry's ice cream and wished I had been prepared with Cherry Garcia and Cookie Dough ice cream in my freezer.   

It was all worth the pain and discomfort to be able to drink healthy smoothies and runny liquids again, without the fear of a mixture of almond milk and stomach acid running onto the skin of my abdomen, and having my blouses ruined.  And now I wouldn't have to treat fungal infections caused by wetness, and spend a large chunk of my disability check on gauze pads, anti-trauma tape and little plastic strips to cover the oozing hole [it's such a battle to get what you need from insurance, who only sent 2-inch open-weave gauze which was totally useless].