I have a long list of illnesses (see it here). In 1995 when I was 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 fibromyalgia, the most debilitating illness of all. (Read "The Spoon Theory" to understand more.) Below are the detailed accounts of my ups and downs on this journey.

Friday, October 12, 2012

Surgery!

  UC = ulcerative colitis      ostomy = short for ileostomy or colostomy  

In this post I am going to give a very long and very detailed account of my surgery, from beginning to end.  I will cover as many facts and points as possible so that anyone considering this procedure can know exactly what to expect.   During the times where I was unconscious or too drugged up and out of it to remember much, I had my mother take notes on everything that happened since she was by my side the entire time, so I have been able to fill in the whole story as much as possible.

The day before my surgery, I had to do a bowel prep to clear out my intestines.  I've done these plenty of times before (required for every colonoscopy), and there are several types.  This one consisted of instructions for nothing but clear liquids all day and a laxative pill followed by about a half-gallon of laxative drink, taken eight ounces at a time, every ten minutes.  I ended up drinking the glasses every fifteen minutes just because the liquid was too difficult to get down that quickly.  It's a lot of fluid to chug at once, and it tastes pretty bad as it's throwing your GI tract on a roller-coaster ride, so if I'd taken it any faster, I don't think it would have stayed down.  I started around 3:00 PM, and it took a few hours to get me all cleared out.  Because I was so sick with my UC and hadn't eaten much in the couple days prior, I was pretty weak by the time my parents showed up that evening.  Of course I was instructed not to eat or drink anything past midnight before my surgery, even water, so by the next morning I was suffering from even more severe starvation, dehydration, and blood loss than usual and I was still having bad stomach pains and cramping from my UC.  I was pretty much a miserable wreck.

My parents drove me to the UCSF Medical Center on Thursday, October 4th, 2012.  When I arrived, I
Laying on my hospital bag
 in the back seat of the car 
on my way to UCSF.
was extremely tired, thirsty, and in a lot of pain.  We checked in around 8:30 AM, and after I signed a couple forms and showed my I.D. and insurance card, they had me go to a pre-op room and change into a hospital gown, booties, and a hair cover and lay down on a gurney.  They hooked me up to an IV (just a saline drip) and had me fill out some more paperwork regarding medical history, medications, recent health, and current symptoms.  I also signed some release forms and verified that I know exactly what type of procedure I was there for (total proctocolectomy with ileoanal reservoir construction and temporary diverting loop ileostomy - it's a mouthful).   The surgeon's chief medical resident came in to introduce herself and explain that she would be helping with the surgery and answer any questions I might have.  The anesthesiologist and his team came in to also introduce themselves and ask a few more basic questions as well as answer any further questions I might have about drugs, anesthesia, and pain management for after the surgery.  My parents were there the whole time offering support, asking appropriate questions of the nurses and doctors, and taking notes.  Throughout all of this pre-op stuff, I was in a lot of pain just from the UC, and I was just waiting for them to give me some sort of pain-killer or sedative relieve my misery.

This is me putting on a smile while in
incredible pain from my UC.  I was, however,
confident about going into surgery.
My surgeon's previous procedure ran a late, so we had to wait for about two hours before she and her assistant eventually came in to talk to me at 11:45.  Up until this point, I did not know whether they would plan to construct the J-pouch during the first surgery.  It was all dependent on the results of the CT enterogroaphy of my small intestine (to rule out Crohn's as much as possible), which I hadn't heard back about yet, and on my blood tests to show whether I was healthy enough to actually heal the J-pouch once it was created.  She reported that both tests looked great, and so they would go ahead and construct the J-pouch today as long as she didn't see anything unexpected and suspicious while she was in there.  She said once she started the procedure, it would take about four hours, which surprised me because I'd heard this surgery takes more like seven or eight.

At 11:55 one of the nurses finally came in and administered some Versed (a sedative) to make me more comfortable.  At noon my mother gave me a kiss and my father gave my hand a squeeze as the nurses wheeled me from pre-op down the hall and into the operating room.  They helped me move from the gurney onto the operating table, propping my head on a yellow block.  As soon as I was on the table, they all swooped in to prep me all at once, but I wasn't nervous or scared, partially because of the sedative they had given me.  One person was inserting a second IV into my other arm while someone else was wrapping air compression wraps around each of my legs that would inflate on and off every minute to promote circulation and prevent blood clots during and after surgery.   Another person strapped a belt around my waist to hold me down on the table (making some joke about how surgery doesn't go so well when the patient falls off the table), while someone else put a gas mask over my face.   After that, the amnesiac effects of the Versed must have kicked in, because everything went blank.

At 5:15 the surgeon came out to the waiting room to speak to my parents.  She told them that the surgery went well.  She said that my whole colon and rectum were very sick, and it was clearly a good choice to remove it.  Everything had gone smoothly during the surgery, and they had formed the J-pouch.  She told my parents I would be in recovery for about an hour and a half, at which point they could meet me up in my room on the fifth floor.  Right after that, my dad saw the surgery door open and my parents saw the nurses wheeling me to the recovery area.  Apparently I was talking to them and they were reassuring me.  When my parents went down to get some food from the cafeteria, they ran into the surgeon's assistant.   She told my parents that right after the surgery I kept crossing my legs and they kept having to tell me to uncross them, which made my mom laugh because she remembered a remark I'd made the day before that if I could feel a catheter after surgery I would know that I had gotten a J-pouch.  (They wouldn't have left the catheter in afterwards if the surgery was a simple colectomy/end-ileostomy and no J-pouch).   Dad asked if I would remember any of it, and she said no because I kept asking the same question repeatedly, but that that was normal.

------------------------------

The next thing I knew, I was waking up groggily in the post-op room a little after six o' clock (yes, I actually looked at the clock and noticed what time it was), almost as if I was waking up from a nap.

Before I continue, I need to explain that when my UC was as bad as it was, I had this constant, hard-to-describe, uncomfortable, sick feeling in my lower abdomen all the time - every minute of every day.  It was the disease, at work and bleeding at all times, and it didn't feel good.  I was so incredibly sick of that feeling by the time I went in for surgery that I was really looking forward to a colectomy just to get rid of that diseased feeling in my tummy.  Well the first thing I noticed when I woke up from surgery was that the disease was gone, and that feeling was such a relief that I didn't really care much about anything else.

As I came to, I could feel the compression wraps still working on my legs and felt a little sore around my abdomen but not really in pain.  My mouth was incredibly dry, and my throat was kind of sore and scratchy from the intubation.  I rember asking, "Are we all done already?" and a nurse answering, "Yep, all finished!"  They brought me a sponge swab dipped in a cup of water to wet my mouth, which felt like heaven.  They also showed me how to work the button that would dispense a shot of Dilaudid (narcotic pain-killer) into my IV any time I pushed it (only spaced ten minutes apart)... That pain pump was my best friend for the next couple days!  I knew beforehand that the plan was to keep me in recovery for an hour and a half just to make sure I recovered and woke up okay from the anesthesia.  I was in and out of it for the next couple hours, but they ended up keeping me in there for a lot longer than expected because my catheter was not producing any urine.  They were concerned about my kidney function and kept hooking up more bags of IV fluids.  They also tried flushing the catheter, which basically consists of using a large syringe to push water up into my bladder and then suck it back out to make sure the pathway was clear... not a fun process.

Around 8:00 PM they finally wheeled me up to my room, even though the catheter still had only produced about 30 mL, which is practically nothing.  They were still concerned and would keep a close eye on me while administering more fluids.  They said the next step would be to take the catheter out and insert a different one to make sure the problem was not with the catheter.  I was dreading this because I knew by this point that as long as I was still, I was pretty comfortable, but if anyone touched or put pressure in certain areas on my abdomen (or changed pressure in my surgical site by "flushing" my catheter), I could get these really intense, stabbing, shooting pains through my tummy and surgical site that made me jump back and cry out.  When it happened, it was almost as if someone had touched a bundle of nerves that shot pain out in all directions.  I would do anything to avoid that feeling again.  (Just FYI, the doctors later said this was unusual. If you're considering surgery, know that this is NOT a typical side-effect or sensation.)  But they would give it a little more time and fluids before switching catheters to see if it would pick up soon; maybe I was just REALLY dehydrated.

It was in my room that evening that I got my first good look at what was going on down in my tummy area.  I could hazily see my new stoma through the foggy, clear plastic of the ostomy bag attached to my belly.  It was a bit smaller and lighter pink than I'd expected.  (The color darkened over the next day or so to the red it is now.)  There was also a tiny laproscopic incision above that and off to the side.  There was another matching laproscopic incision inside my belly button.  These two were just sealed with a bit of surgical glue and look like they will pretty much disappear into nothing by the time they heal.  There is a drainage tube coming out of the third laproscopic hole on the other side of my belly; the tube is surrounded by a bandage, and the other end of it is attached to a little plastic bulb where the fluid collects.  Finally there is a very neat, 3-inch incision right above my pubic bone area, mostly covered by the ostomy bag.  I think I can see some tiny sutures there, but it's hard to tell since this incision is also covered in a coating of surgical glue and looks very clean.  Overall I am very pleased by the look of everything.  It appears that scarring will be minimal.

Right then and there I decided to name my stoma Stella.  I liked it mostly for the alliteration ("Stella the Stoma"), but also because Stella means star.  I kind of see her as the star player in my life right now... and the small, bright red dot on my belly is somewhat star-like in my mind.

Welcome to the world, Stella: 10/04/12.


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3 comments:

  1. Hi Ronnie,
    I just came across your website after doing a google search for "surgical staples, j-pouch, coconut oil." I read some of your posts and wanted to share a little with you. Most of all, that in the future your GI issues will not consume so much of your life! I know that having your condition has perhaps contributed to your identity in some ways, but it will not always interfere and derail you as you set out to accomplish your goals, as I am sure it has a little-- or at least caused some cancelled plans and postponements along the way. (It did for me: senior prom, graduation, first semester of college, etc.) I too was diagnosed with Ulcerative Colitis at the age of 15, had a complete colectomy and J-Pouch/ileostomy, then the reversal (around 20-21 yo). Those were very difficult, painful, isolating and life changing years for me, and very much influenced the person I am today -- mostly good :) That was 20 years ago!!!

    Like you, I'm a teacher (elementary art). It wasn't my original plan, though. I probably would not have been a teacher had I not struggled so much in school as a result of the Ulcerative Colitis. Some of my teachers in high school made it even more difficult than it had to be, so I became especially sympathetic toward children dealing with the normal everyday life challenges that all kids go through, meanwhile struggling to get through the day -- not dying is actually a good day! It's really hard to be chronically sick as a young person and I don't think teachers (or healthy people) really appreciate just how completely impossible it is some days. It's also hard to get those years back, so career, college, relationships, independence, etc. become so confusing for young people. College professors were better, but I had to withdraw from so many classes and eventually change schools and career path -- architecture requires many all-nighters, so it's a good choice for healthy people.

    Some advice: Have electrolyte supplements handy (Whole Foods has a good one, pedialite is okay, but it's designed for little kids so it's not that effective) and avoid anything that makes your stools watery! Dehydration happens so FAST. I've had to go to the ER for fluids many times after a bouts of diarrhea from a stomach bug or food related stomach issues. Also, a probiotic can help keep stools firm and will keep fatigue away. Stools should not be that loose, and never watery. Like peanut butter (gross, I know).

    Wishing you the best future,

    Shannon



    ReplyDelete
  2. Hi Ronnie,
    I just came across your website after doing a google search for "surgical staples, j-pouch, coconut oil." I read some of your posts and wanted to share a little with you. Most of all, that in the future your GI issues will not consume so much of your life! I know that having your condition has perhaps contributed to your identity in some ways, but it will not always interfere and derail you as you set out to accomplish your goals, as I am sure it has a little-- or at least caused some cancelled plans and postponements along the way. (It did for me: senior prom, graduation, first semester of college, etc.) I too was diagnosed with Ulcerative Colitis at the age of 15, had a complete colectomy and J-Pouch/ileostomy, then the reversal (around 20-21 yo). Those were very difficult, painful, isolating and life changing years for me, and very much influenced the person I am today -- mostly good :) That was 20 years ago!!!

    Like you, I'm a teacher (elementary art). It wasn't my original plan, though. I probably would not have been a teacher had I not struggled so much in school as a result of the Ulcerative Colitis. Some of my teachers in high school made it even more difficult than it had to be, so I became especially sympathetic toward children dealing with the normal everyday life challenges that all kids go through, meanwhile struggling to get through the day -- not dying is actually a good day! It's really hard to be chronically sick as a young person and I don't think teachers (or healthy people) really appreciate just how completely impossible it is some days. It's also hard to get those years back, so career, college, relationships, independence, etc. become so confusing for young people. College professors were better, but I had to withdraw from so many classes and eventually change schools and career path -- architecture requires many all-nighters, so it's a good choice for healthy people.

    Some advice: Have electrolyte supplements handy (Whole Foods has a good one, pedialite is okay, but it's designed for little kids so it's not that effective) and avoid anything that makes your stools watery! Dehydration happens so FAST. I've had to go to the ER for fluids many times after a bouts of diarrhea from a stomach bug or food related stomach issues. Also, a probiotic can help keep stools firm and will keep fatigue away. Stools should not be that loose, and never watery. Like peanut butter (gross, I know).

    Wishing you the best future,

    Shannon



    ReplyDelete
    Replies
    1. Wow, Shannon - I'm not sure how I missed this comment back when you posted it. Thank you for your genuine and heartfelt reply. Yes, it is difficult to wrap my brain around the fact that I have gone through so much and "lost" so many years of my life to this disease and condition. But I also feel like I have learned a lot and have had opportunities to help others on a similar journey, including some of my own teenage students who also have ulcerative colitis! I am currently still dealing with issues related to my j-pouch, but I have faith that eventually it will all settle down and become my new normal before too long. Thanks again, and good luck on your own journey. :-)

      Delete

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