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.

Wednesday, December 12, 2012

Rocking the Takedown!

  ileostomy = A surgical procedure in which a part of the lower small intestine (ileum) is brought through the abdominal wall and sewn in place on the tummy to create a stoma for the elimination of digested food waste into an external bag.  
  takedown = The surgical reversal of the ileostomy, in this case in order to hook up the newly created and healed j-pouch for use.  

The good thing about the preparation for this takedown surgery is that there is NO BOWEL PREP!  (I.e., a gallon of laxative to clean out your colon.)  Woo-hoo!  Since I only have a small intestine now and no colon, all I have to do is a 24-hour clear liquid diet.  So on Monday I sipped on organic apple-juice and free-range chicken broth.  I also had some blue jello.  They don't like you to eat anything red since it could be mistaken for unidentified bleeding during the surgery.  (Side note: my output that night was bright blue - literally the color you see there in the bowl in the photo to the right.)  My parents showed up that evening, and it was a happy reunion since I was full of health and excitement this time.   (Compared to last time they showed up to take me to the hospital when I was gaunt, sickly, dehydrated, malnourished, anemic, and in severe pain.)

 This is my "I'm gonna rawk this surgery" face.
I checked in to UCSF at 9:30, and since we'd just been through all this pre-op stuff ten weeks before, it was all old hat this time around.  I showed ID and insurance, signed paperwork, answered questions verifying my identity and what procedure I was having done, and was escorted to a pre-op room to change into the hospital gown, stylish blue hair net, and the standard tan-colored, rubber-soled booties.  After my IV was hooked up with just a saline drip to keep me hydrated, we proceeded to wait in the pre-op room for an hour and a half while I laid back on the gurney and my parents kept themselves busy with apps on their phones in between chats with me.

Eventually crews of people came in to introduce themselves: nurses, anesthesia team, residents, and finally my surgeon, who told us the procedure would take anywhere from forty-five minutes to an hour and a half.  Then I was given Versed through my IV as before to calm my nerves; I kissed my parents good-bye and was wheeled into the O.R. at just before noon.  This part was kind of hazy because of the Versed was kicking in, but I remember it taking a little longer than last time.  The nurses and surgical assistants took their time strapping the "seat belt" on me, putting electrodes on my shoulders and sides, putting the gas mask over my mouth and nose.... I remember hearing music on the radio before I blacked out.  Again, it was just like going to sleep.

Getting re-acquainted with
the dilaudid pump.  It was a
happy reunion.  :-)
The next thing I knew, I was waking up in the recovery area.  I looked at the clock on the wall in front of me, which said 2:30, about two and a half hours after my surgery had started.  Within a few minutes of waking up, I felt a localized pain growing bolder right around my incision where my stoma used to be.  When I told the nurse this, she gave me a booster shot of Dilaudid through my IV and showed me how to use the Dilaudid pump button like before, and the pain died down pretty quickly.  Since then it has stayed consistently between a zero and a two (on a scale of one to ten).  So then I just kind of relaxed as they kept an eye on me and checked my vitals occasionally.  I noticed there was no surgical drain coming out of me, no second IV in my other arm, and most importantly, no ileostomy bag!!  Fortunately, my foley catheter worked great from the start this time, so no trouble there - couldn't even really feel it.  From my last surgery I knew to expect this anesthesia recovery timeframe to be about an hour and a half, and when it took longer, they told me the reason was because they were waiting for a clean room.   (The hospital was at capacity.)  At this point I had one of the nurses grab my parents to come back and see me since I knew they'd be concerned by then.

We waited as one-by-one everyone else was wheeled out, and finally I was taken to my room around 5:30 PM.  I liked the room I ended up with better anyway, so I didn't mind waiting.  Last time I was right in front of the nurses' station which was super loud and busy all the time - at that point it was kind of good because a nurse would be in my room in under thirty seconds every time I pushed the call button, and back then when the surgery was way more invasive, I needed a lot more help.  But this surgery was such a breeze that I preferred the privacy of the room tucked way off in the corner, away from all the chaos.  Compared to the last surgery, this one was practically painless.  I haven't had any trouble moving around or reaching for things... just a tiny bit of ache around my incision, but that's to be expected, and it's easily controlled with the Dilaudid pump.  I felt well enough to walk that night and suggested it to the nurse, but it was time for a shift change; nurses were buttoning down for the night, and my mom was headed back to the hotel, so we decided to wait until the next morning for the walk.

I didn't get more than a couple of minutes of sleep at a time that first night because of the electronic leg wrap compressors.  (They are used to increase circulation and prevent blood clots when you're in the lying position for so long after general anesthesia.)  They go off every few minutes, so every time I'd start to drift off, they would turn on to squeeze my legs and wake me up.  So it looked like this: drift, sleep for two minutes, wake up.  Drift, sleep for two minutes, wake up.  What was odd is that every time I drifted off, I started a new dream, so I ended up having like twenty different dream fragments that night, LOL.  I knew to expect this though, and I was okay with it.  Even though I wasn't getting solid sleep, it was restful because the lights were out, my eyes were closed, and I was sedated with the Dilaudid.

All five incision scars are actually "visible" in this photo,
though the laproscopic ones are sort of hard to see,
and one is hiding inside my belly button.
Around five-thirty in the morning I decided to give up on sleep, and that's when the doctors happened to come through for their rounds.  The head doctor asked how I was doing and wanted to see my incision.  I really was feeling spectacularly well for just having had surgery, so I told him I was doing great, and he peeled back the bandage to have a look.

Frankenstitch close-up.  (R.I.P. Stella.)
This is the first time I caught a glimpse as well.  It was a cut about an inch-and-a-half to two inches long, and it was held together with five staples.  It looked kind of Frankenstein-ish.  I knew from my pre-op visit with my surgeon that this incision could not be sealed up with glue since it was not a sterile incision due to being the former location of a waste evacuation site (my stoma).  So aside from the staples holding the skin more or less in place, it needed to be able to drain and breathe.  He had the other doctor (assistant or resident) stay behind to cover it with a new bandage.  This is when I noticed a reaction in my abdomen similar to my last surgery: when certain locations were touched even very lightly around my incision, it would trigger an involuntary response.  Last time it felt like shooting nerve pain; this time it was just a muscle spasm around my incision site.  It didn't really hurt, but it was startling and uncomfortable when the muscles right around my cut clenched up like that uncontrollably, so we did what we could to avoid it by just placing the tape very gently.  I noticed the same reaction later in the day when the nurse pinched the side of my tummy for my heparin shot - it triggered an involuntary spasm on the other side of my belly by my incision.  Very strange.  But it had all just been cut and rearranged a bit, and maybe some wires had been crossed or confused in the process, so I wasn't worried.  I knew it would sort itself out within a day or two.  (Just FYI, this is definitely not a normal response/reaction to this type of surgery, so don't think or expect that it will happen with you if or when you ever get to this point.)

Right after the doctors left is when I started asking the nurses if I could start getting my walks in.   They like you to walk as much as possible to encourage blood flow, proper breathing, and GI motility, which all help in the recovery process.  However, when I brought it up the nurses were in the middle of a shift change, so I  had to wait for them to report out to the new nurses and then for the new nurses to make their rounds.  I would have gone on my own, but they insist that your first time standing up be supervised so they can watch your blood pressure and make sure you don't pass out.  So I didn't get to start walking until around 10:30.  But the good news is that my nurse took the catheter out before she had me stand up.  Yay!!  It is so nice to have that thing out once it's been in for a while.  After taking off the leg compressors, unplugging my IV stand from the wall, and untangling the IV lines from the bed, she supervised as I very slowly sat and stood (the pain meds can kind of rush to your head at this point making you feel dizzy if you're not careful), and then she walked with me for most of my first lap as I held on to my IV stand for extra support.  Once she was convinced I was fine on my own, which I was, she left to go change my bedclothes and set up the "hat" (plastic bowl with wings that sits down in the bowl of the toilet) to catch my urine.  They measure everything that comes out of you during your entire stay.  I walked two laps around the floor on my first time out.

A little bit later my Mom showed up with Christmas lights to tape around my bedside table, a little stuffed Santa and snowman to set up, and Christmas music coming out of her ipad.  It was very sweet, and all the nurses got a big kick out of it.  This will be the first time in a lot of years I won't be able to go visit family for Christmas since I'll be recovering from surgery, so she brought Christmas to me.  Plus, what better Christmas gift could I get than a functioning j-pouch?  After she showed up and finished decorating, we walked three more  laps together.  We did four laps later that afternoon, and finally five on my last round of the day when my father showed up.  (He had been working from his computer at the hotel.)  So I completed fourteen laps altogether on day one.  Walking was pretty comfortable from the beginning, and I was able to stand upright with no problem.  Other than that I spent most of the day relaxing, cruising Facebook, watching a little TV, chatting with my Mom, and dozing here and there.

Because the surgeon needed to shut down my GI tract in order to operate on my intestine, I knew that the first sign of my guts "waking up" after surgery would be passing gas.  That is what the nurses and doctors are always asking about is when you start farting.  This lets them know that the intestine has started functioning again and it is okay to start introducing fluids by mouth, otherwise before that it would just come right back up.  So during the first night after surgery, I was pleased to notice gurgling noises and sensations in my tummy, and at 6:30 AM, I had my first little toot.  This seemed promising, and I started thinking I might be able to eat solid food by the end of the day.

Day one stat board showing my diet as restricted to ice
chips only, and a check-off of all my walks that day.
Unfortunately, the next fart didn't come for another ten hours.  Around 4:00 I was able to pass a couple more little ones, but I could feel there was a lot more gas in my belly waiting to get out.  It was not painful, but it just felt a bit bloated.  So all of the first day I was only allowed to chew on ice, and nothing more.  Around 6:00 in the evening my nurse gave me a half of a cup of chicken broth, which seemed to move things around more in my belly and build the pressure a bit more, but still nothing came out.  By 9:00 it started getting a little uncomfortable, so I told the night nurse, and she brought me a heating pad, which seemed to help a bit.  Then around 10:00 she brought in a cup of chamomile tea I had requested, and that totally did the trick.  As soon as I started sipping it, I started tooting away, and I continued passing gas for the next few hours until all the bloating was gone.  In fact, I'm still passing little farts here and there as I write this at 12:30 AM.  This is a great sign - it means that tomorrow I will be able to eat.

Chillin in my room, checking emials and posting
 updates on HealingWell and
I have to say during the first day and night, this room was way less busy than the last time I had surgery.  During my last inpatient stay, it seemed like someone was coming through at least every hour to check vitals, empty drains, ask questions about pain and functioning, look at my incisions, check out my stoma and output, give me pills, give me shots, give me food, replace my IV bags, clean my room, etc.  This time it was relatively quiet and peaceful.  I still had my assigned nurses coming in every four hours or so to check on me and take vitals or empty my catheter, but not nearly as crowded as last time, which was nice.

So overall the takedown surgery and immediate recovery has gone SUPER smoothly and with flying colors.  No complications, plenty of mobility, and hardly any pain.  Now it is the end of day one.  Tomorrow I will be introduced to more clear liquids in the morning (apple juice, broth, jello), and most likely "full liquids" that evening (thicker soup, pudding, yogurt), and then gentle solids the next day.  So in a couple days I will post again to tell you how my j-pouch functions when it's required to pass something other than gas!  This is where it could go either way... so it's a tiny bit nerve-wracking, but since everything so far has been going so smoothly, I have confidence that this next phase will too.  I'm excited to see how it goes!

P.S. - Right after I published this post, I went to the bathroom to urinate and was surprised to find that I also passed my first itty bitty little poo!  (2:30 AM)  It must have been the half a cup of chicken broth since that's all I had aside from water on day one!?  Bizarre!  I almost wanted to take a photo since it was the first "product" of my brand new j-pouch, but figured that may be going a little too far, LOL!  I gently wiped with a baby wipe and applied some skin barrier ointment provided by the hospital in order to start the routine required to prevent the dreaded "butt burn".

P.P.S. - In the couple of days following this post, I ended up with some post-op complications which required me to stay in the hospital for a lot longer than expected.  None of them had anything to do with the j-pouch or its function; they were all just issues that could come up after any major abdominal surgery.  So my next two posts include some of the most difficult things I have been through yet.

Feel free to leave reactions and comments below...
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1 comment:

  1. Hello, this is now 2015 and I just came across you blog. I do not have your issues, but I was looking up things about prednisone (which I just had to start taking for vasculitis) and that is how I found it. Anyway, I so admire you. And by the way, you are a fantastic author. You describe everything to the tee and really paint a picture with your word choices. I think you are probably a really neat person and are fun to be with. So, I haven't finished reading your story yet, and I don't want to jump ahead. I just wonder how you are doing now that it has been a couple of years since your surgeries, and I wonder if you still keep up this blog. Thank you for your posts - I know they are helping others who are facing that type of surgical procedure. Mary Jane


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