Summary Bio

I have a long list of illnesses (see it here). In 1995 at age fifteen I was diagnosed with ulcerative colitis (a disease of the large intestine), and I lived with it for seventeen years. In 2010, it spread and advanced to a severe diagnosis. I spent a year on a roller-coaster of intensive immunosuppressive drug therapies, only to end up requiring surgery to remove my large intestine and replace it with a j-pouch. After surviving three surgeries, I developed Myalgic Encephalomyelitis, the most debilitating illness of all. (Read "Myalgic Encephalomyelitis" and "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, December 28, 2012

Extended Hospital Stay

  ileus = blockage of the intestinal tract with absence of physical obstruction due to lack of propulsive action of the bowels  

Well here it is, sixteen days post-op, and I am still in the hospital.  There has been a lot of back and forth, but I think I am finally steadily headed in the right direction and will probably be going home soon.  Here is the scoop on the last week and a half since my last post...

After that bad episode with the ileus, they tried to put me on clear liquids and then full liquids again, and I had the same problem:  nothing passing through, excessive belching, bloated/distended belly, and eventually heartburn that turned into nausea that turned into spewing black-green digestive juices out both ends uncontrollably, easing up a bit by morning.  I think at that point I may have also been running a bit of a fever.  The vomiting was brief, but it was so violent (a LOT came out) that it strained my ab muscles, which caused me a significant amount of pain for the next couple days.  I was spent, sore, and starting to get into a "give up" mind-frame.  On Wednesday, the 19th, they did a chest X-ray (to check for chest infection) and a CT scan to try and figure out why my bowels were not functioning properly.

I had been resisting the NG tube this whole time because frankly, it just sounds awful: a tube up your nose, down your throat, and into your stomach.  And you can feel it there; it makes it difficult to talk or swallow.  The purpose of the NG tube, though, is to suck all the nasty digestive juices out of the stomach and upper small intestine that causes one to feel so sick and bring some relief and rest to the GI tract from having to try to pass and deal with all of it.  Other people on who have had it said that although the tube itself is unpleasant, it brought instant releif from the symptoms, and my surgeon said that it could help resolve this ileus issue.  So when I could tell it was starting to happen again the next night, I told them to put the NG tube in before I started vomiting again.

NG tube = no fun!!
I'm not going to go into excessive detail about my experience with the NG tube here because I believe I had a particularly bad experience that is very atypical, and I don't want to scare anyone off of using one themselves.  I think the main problem is that they chose a size of tube that was too big.  But basically it was extremely painful and traumatic going in (felt like it were breaking through some area of my nasal cavity that it shouldn't go - just felt wrong - but they busted through anyway); it was painful while it was in (couldn't talk or swallow, could feel it down my throat and in my belly all sore); and it was even more painful and traumatic coming out.  It got stuck in the same spot, and the nurse had to pull very hard (three times) to get it out my nose.  She is quite experienced with these things and says that NEVER happens - it usually just slides right out.  (In fact, I have heard from a few people who accidentally knocked them out or sneezed them out.)

I can tell you that there is not much that will take down my drive and positive attitude, but if anything could do it, it was my experience with the NG tube.  It broke my spirit.  Took the life out of me.  But it did its job and got the sickness out.  It was in and sucking nasty bile out of me for three days before it finally started running clear and was no longer needed.  It was removed at 2:00 AM on Sunday, so four and a half days ago.

My PICC line: an IV line that goes up my arm and into my
chest near my heart to most effectively deliver the multitude
of meds and nutrition I'm getting pumped into me.
I was very happy to have the tube out, but after that traumatic experience, my heart rate was elevated, and my body spiked a bit of a fever again (101.5), which had me feeling pretty awful, but it died down to 99.5 pretty quickly and stayed there for a day or so.  The following morning my white blood count was elevated, and the doctors noticed a build-up of fluid in my abdomen on my last CT scan.  So before I could progress with diet or anything else, they had to get to the root of what appeared to be an infection of some sort.  The solution for this was to insert a drainage tube into my abdomen to drain the excess fluid and start me on antibiotics.  The antibiotics I could care less about: sure, I have an infection - throw 'em in the mix.  The drianage tube, on the other hand, I was not at all looking forward to.  But it was unavoidable; they had to get the fluid out because it wasn't absorbing on its own.

The plethora of meds and nutrition running
 into me via the PICC line.  The number
of bags goes up and down throughout the day.
Because it was a holiday, they had to bring in an on-call team to do it, so by the time the team got here and ready it was 10:00 PM on Christmas eve.  Once I got down there, they told me I would actually be getting two drainage tubes in, one on each side.  Great - double the joy.  After they did another CT scan to find exactly where the abscess was, they marked the spots on my belly and got to work.  Now, normally when the hospital is fully staffed, they would sedate me with lots of drugs so I would be practically unconscious and not feeling much.  However, because they did not have the proper nurses to watch me closely afterwards in the recovery area before being wheeled back to my room (the only one there had to rush off to another on-call emergency), they were not able to sedate me.  They gave me a small amount of Fentonyl  (pain-killer) through my IV, but my tolerance for those types of pain-killers is pretty high by now, and I was fully awake and aware through all of it.  They did give me some local anesthetic, and I'm sure it would have been much worse without that, but I could still feel everything they did to me, and it hurt.  A lot.  There was one guy on each side of me working simultaneously on each drain.  They started by inserting long needles into my abdomen.  Then they ran wires in and retracted the needles, and then they shoved the tubing in around the wire and situated it were it was supposed to go before taking the wire out.  Finally, they stitched the tubes in place on my sides and applied the dressing.   They removed 200 mL of fluid from the left side and 100 mL from the right side (taking samples to send to the lab of course) before attaching the bulbs at the end of the tubes that would collect the fluid as they continued to drain.  All around, another pretty traumatic experience.

The next morning, I woke up in quite a bit of pain from the drain sites, and it felt like was back where I was after surgery one - unable to move or use my abs, needing a lot of assistance to get out of bed, etc.  What was coming out of my right drain looked pretty normal (yellowish-tinted clear fluid) and minimal, but what's been coming out of the left drain is nasty, stinky, milky/pussy fluid that is obviously coming from wherever the the infection must be, so it's a good thing we're getting it out of me.  Over the course of that day (Christmas) the pain from the drainage tubes slowly died down a bit, and with the use of my pain pump I was able to be pretty comfortable as long as I was laying in bed and would just feel pretty sore when I tried to get up or down.  Over the next few days it very slowly got less painful, and today I'm able to get in and out of bed without too much trouble.  I've been on antibiotics since then, and all of my vitals have returned to normal.  The last couple days I have actually been feeling pretty good.

Right after I had the drains inserted, I almost seemed to have a bit of a speed bump again with my GI tract on Christmas day: belching, a bit of nausea (which I still attribute to the high doses of Dilaudid I kept myself on that day), nothing (no gas or fluid) coming out down below, bloated/distended belly.  But with a little walking and some hot-packs, things started moving that evening, and by nightfall turned into a "mass exodus" with me farting up a storm for a couple hours and then draining everything out of me like a faucet (going to the bathroom non-stop).  There was a point in the night where I just plugged my IV cart into the outlet in the bathroom and hung out on the toilet for an hour or so because I was tired of going back and forth to the bed.  I didn't get any sleep that night.  But things slowed down as the morning progressed, and I was pretty comfortable yesterday.

Since all my vitals and GI tract function seemed to have returned to normal, yesterday they started me on clear fluids.  (I'd been on either "nothing by mouth" or just ice chips since well before the NG tube, so several days.)  I spent the day reading, walking laps (35 that day), napping, watching Netflix, and sipping on my fluids.  I was comfortable.  Today they progressed me to "full liquids" (soup, yogurt, pudding, etc), and I have felt even better, apparently tolerating and digesting the semi-food just fine.  This evening is when I finally started having BM's that look more like a BM (refried beans) than something an alien would spit out (neon green-black fluid).

My surgeon stopped by today and told me that the next step would be to take me down for another CT scan to see what was going on with the abscess (space where the fluid had been collecting) .  They would insert a little contrast fluid into the drainage tube that is there to see where it would go.  It would either show that the abscess was shrinking and contracting to close up on its own, or it could potentially show where the fluid had been coming from if it shows a path either to my j-pouch or the site where they sewed my stoma closed.  Either way would be useful bits of information, but of course we're hoping for the former so that I can hopefully go home soon.

At any rate, I have been feeling much better and seem to be out of the woods.  If all goes well, they may start me on solid food at some point tomorrow, and as long as the infection site continues to take care of itself and I'm digesting food okay, then I could possibly go home this weekend.  (Fingers crossed.)

Before I sign off, I want to be clear that through all of this - as far as we know - none of the complications I have been through have anything to do with the actual j-pouch.  They are all post-op issues that could come up after any type of major abdominal surgery.  The j-pouch hasn't even had a chance to really show its stuff yet since I haven't really had a chance to digest solid food yet.  So far it's been doing it's job just fine, easily passing whatever comes into it.

Anyway, the important thing now is that I have got my spirit back.  I'm looking forward to my future again - I can't wait to get home and finish my recovery, introduce my j-pouch to new foods, start walking and slowly getting back into my fitness goals.  I am still hopeful and optimistic.

Feel free to leave reactions and comments below...
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  1. I know what u went thru was pure hell but u are almost there! Keep ur spirits up and know u have a ton of ppl behind u that are cheering you on!

  2. Sounds like you've been through it...:( I am sure you're ready for things to look up. I am not sure if I'll ever be able to get a J-pouch because of my diseased rectum, but if I ever do, it is good to know about all of these possible complications related to the surgery. Thank you for sharing, as painful as this has all been.


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