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.

Sunday, December 16, 2012

Two Steps Back

Me and my dad walking the halls
of UCSF Medical Center.
Well, the takedown surgery itself as well as days one and two went great.  I got my hopes up and thought I would pass through the entire surgery two phase unscathed.  They tell you walk as much as possible to get those bowels to wake up from surgery, so I walked, walked, walked.  Since it was the only thing I had control over that I could help do to progress things forward, I walked every chance I could.  Every couple hours I'd get up and walk a set of laps, increasing over time.  
 "Full liquids" for breakfast.
A few days later, my dad helped calculate the distance of these laps around the hospital floor.  On day one I walked a total of fourteen laps (just over one mile), and days two and three I walked forty-five laps each (three and a half miles).  By the beginning of day three (Friday), bowel movements had just started to come easily and without the need to bear down (as they should), and I progressed from clear liquids to full liquids for breakfast, and to gentle solids by lunch.

However, by Friday evening, I hit trouble.  Big trouble.  I started not feeling well during that afternoon and did not eat my dinner, thinking it was just bad acid reflux from not having the proper dosage of my heartburn meds.  I also hadn't passed any gas since late the night before and was becoming bloated again, and none of my tricks to get things moving were working (rubbing, moving/walking, hot packs, Gas-X, knees-to-chest, etc.)  Well they treated the heartburn, but by late that night I realized it was more than just heartburn and was probably more of a bloating/blockage issue... the food I ate wasn't passing as it should, and neither was the gas.

Trying to sleep through some of the misery.
By the middle of the night I was vomiting green bile and had started what turned into one of the worst nights of my life.  The night nurse gave me something via IV for the nausea, but it didn't help at all.  On top of the vomiting, I have never felt so sick, ever. It was beyond nausea - I can't even explain what it felt like... just all bad, really, really BAD.  It felt like someone had literally dropped a ten-pound dumbbell into my stomach - and when I say "literally," I really mean that's exactly what it felt like; I'm not speaking figuratively.  And I mean DROPPED into my stomach, and it did NOT belong there - needed to come out NOW.  A few hours later after I vomited again, they also gave me something to help push things down and out, so on top of everything else, I had diarrhea of this clearish-greenish bile just spewing out of me... out of control, leaking all over myself and having to get up every couple minutes to hobble to the toilet.  I could get to a semi-tolerable state if I was laying down, but sitting or standing made me feel like I wanted to die... and as soon as I lay still for more than a couple minutes, I had to go to the bathroom again, unplugging and dragging the IV stand behind me each time.  Plus, I was afraid to fall asleep because as soon as I relaxed my muscles, I would leak bile all over myself, soaking the pad in my undies an the chucks pad I was laying on.  I was so miserable and out of it, I was barely responsive to the nurses who came in to try and help.

my bloated belly
The next morning things were somewhat more tolerable. I spent most of the morning sleeping and getting up to use the bathroom when I could.  Back to nothing through the mouth... just sipping on a bit of water here and there.  I was previously told I would be going home that day, but that obviously wasn't happening.  From then on out, it has just been a waiting game.  I spent the rest of the day in that semi-tolerable state with no change at all.  Well, I take that back.  The only change was that since my birth control pills weren't absorbing, I had started my period that day, which is, well.... just brilliant.  Later that night, I allowed them to give me some pain meds by mouth (Norco), and I applied a hot pack to my lower back, which was also starting to hurt.  Between the Norco, the hot pack, listening to some mellow music, and sucking on a hard candy (got the taste of bile out of my mouth without putting anything dangerous in my stomach), I started feeling more comfortable   By the end of day four I was able to rest comfortably and happily for the most part, and now at the end of day five, nothing has really changed since then.  

My stomach is still bloated and distended and feels like there is stuff in there that needs to come out (gas?  bile?), but I am no longer feeling so sick and am in much better spirits.  I'm not passing tons of bile anymore; in fact, bowel movements have slowed down almost to a stand-still.  I've gone twice today, and both times were too tiny to even count as the sample to give to the lab that the doctor requested this morning (but both accompanied by a bit of that hallmark, bright green fluid).  I'm not really in any pain, and I am able to get around and walk some laps when I can without much trouble.  Every time I move from the laying position to the sitting/standing position, I still get that awful shifting weighted feeling in my stomach for a few moments and have to take a minute to gather myself, but the Norco helps with that a bit, and once I'm up and moving, it's not too bad.  If my tummy or back start bothering me much, I can use a hot pack to make them feel better.  I started testing clear liquids earlier today and found I was able to handle them just fine.  In fact, when I drink fluids by mouth, my urine output increases, so I know that they are being at least partially absorbed, which is good.  So even though I am still getting hydration via IV, I have increased my fluid intake slowly throughout the day:  tea, apple juice, broth, jello.  I didn't really do any walking day four since I was so sick, but today I have completed 23 laps so far, which is around a mile and a half.  I might get up to walk one more time before I go to sleep.  

Other j-pouchers on have told me that they went through similar stories, and that what I experienced is paralytic ileus, or basically a blockage due to my intestines still being paralyzed from surgery, not having woken up properly and causing bile to pool up in my stomach and bowels causing the sickness and pain.  According to them, they all had to have an NG tube stuck up their nose, down their throats, and into their stomachs to suck out all the bile in order to make them feel better.  Fortunately, we were able to get things under control here without having to use the NG tube.  

The doctor who spoke with me during rounds this morning said that although this type of pattern is not typical, it is not uncommon. He says it happens one in every eight to ten cases and shouldn't take longer than a couple more days, tops, to resolve. These types of cases seem to make progress at first and then shut down again, and total hospital stay can last seven to eight days instead of the standard three to five.  (Lesson learned: don't progress to solid food until you are passing everything else easily and are absolutely sure you can handle it.)  He said either way they would keep me here until I was able to digest food confidently.  But there is nothing to do except wait for my body to wake up in it's own time.  That and try to still walk as much as I can to help get things going.

Walking more laps with Dad.
So still at the end of day five I am just waiting.  Walking and waiting, walking and waiting.  I'm thinking they will probably progress me to full liquids for breakfast tomorrow, but I'm still not passing gas, which is worrisome.  I don't think I'll feel confident eating any food until I'm passing more gas and/or fluid out my j-pouch and feeling less bloated.  But hey, in the past I have made most of my progress in the middle of the night and wee hours of the morning, so things could be very different five hours from now.  Plus I have heard both from nurses and other j-pouchers who have been through this that once you turn that corner, it's like breaking through a wall, and things are instantly better: passing gas and stool easily and able to digest food pretty much right away.  So who knows - maybe by tomorrow I will be digesting food happily and going home soon.  I will just have to wait and find out... and of course will keep you all posted!

Feel free to leave reactions and comments below...
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  1. Ur blog is truly inspiring, I was diagnosed with lymphocytic colitis this September. Tho it is not as severe as ulcerative colitis, I still deal with the cramps, pain, and diarrhea daily. All of this showed up while I was in nursing school and let me tell u, I truly am super woman for dealing with my worst colitis symptoms while dealing with nursing school and clinicals at the same time. My life revolves around my colitis every single day and I wanted to thank u for this blog for not making me feel so alone. Hang in there!

    1. Thanks for the kind words, Anonymous. Yes, it certainly helps for us to feel we are not alone in dealing with these issues. I have gotten a lot out of online support groups and from reading other blogs like mine. It would be much more difficult for us to deal with emotionally if we thought we were the only ones. And yes, going through something like this does indeed show you exactly how strong you are. I suppose that is one of the few benefits of journeys like ours. You will get through it, too. Stay positive, and take care. <3

  2. I had almost the exact same thing 9 days after my takedown. I, too, was able to avoid the NG tube. Sometime it is two steps forward, and one and three-quarters back. Don't be alarmed. Like the doc said...not typical, but not uncommon. You are amazingly strong and optimistic, and that will see you through all of this!

  3. Praying for you, you will have good days but also will have some bad days. I am a fellow ostomate, I had emergency surgery in the summer of 2010 due to a blocked colon and had some complications where i was only given a 5% chance of living let alone even make it through the surgery but I did thank the Good Lord however I had some problems after recovery and went septic so they rushed me to another hospital in NC where I had another emergency surgery that created my ileostomy. Everything that could go wrong did twice I overcame death (my grand-mom died at the age of 101)I must have inherited her genes lol.
    I know the pain you are and will go through and I want you to know I will be praying for you. Hang in there I promise it will get better.

  4. Hi ive been reading ure updates on j pouch forum. Really hope things start improving for u very soon. Your story sounds similar in lots of ways to mine.. I've recently had j pouch surgery in the UK after having UC for 20 years. Like u i did a huge amount on research in where to have it done and how (lap or open) and which surgeon. It took me a year to get my head around having surgery and deciding where to have it. I had my similar problems to u post takedown which i had last Oct.. I expected this op to be the easier one but for me it was harder by miles. U will get there tho.. And u have such a brilliant positive attitude that it will see u thru these dark times.. The discomfort from having a swollen tum is horrid... Once can start eating again u will be suprised how quickly u start to feel better and u will.. Sending u lots of positive vibes and hope ure small intestine starts playing ball so that u can put that shiney new pouch into action! I'm a few months post takedown and life is good! Well done for writing such an informative blog... Good to see there's someone else out there who did as much research as i did on j pouch surgery and searched the net for relevant medical papers! Take care.. Keep up that positive attitude.. Try and distract ureself as much as poss in hosp (music was good for me) and before u know it ule be home..


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