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, October 17, 2012

Recovery: Week Two

  UC = ulcerative colitis     GI = gastrointerologist     ostomy = short for ileostomy or colostomy     ostomate = a person with an ostomy  

On Saturday the 13th, nine days after my surgery, I had my first not-so-stellar episode with Stella the Stoma.  I've read that painful gas is very common during the first weeks after an ileosotmy because gas is more prevalent as well as more difficult to pass when the intestine, abdominal wall, and stoma are still swollen from surgery.  Well, I'd been testing the waters - cautiously at first but then pretty heavily - with the types and amounts of foods I'd been eating and hadn't had a problem yet.  This particular evening I had a large dinner (ate a little too much) and followed it with several dark chocolate Ghirardelli squares.  I'd had all these foods before with no problem, but I think that following such a big meal with chocolate (which stimulates the G.I. tract) just put my tummy under a little too much stress.  Or maybe it was all the butter I had on my sourdough bread (I heard too much fat/oil can also cause gas).  Or maybe there was no reason or trigger whatsoever; it just happens sometimes.

Whatever the cause, over the course of the couple hours following dinner, I felt the building pressure and discomfort in my tummy, slowly growing more painful, and then the pain was at it's peak for another couple hours after that.  I tried popping an extra pain pill, but that did absolutely nothing for me.  Here are the strategies I used that did seem to help: gently rubbing my belly (in between the incisions), applying an instant heat pad, getting up and slowly walking around, swaying side-to-side, changing positions, bringing my knees up to my chest, drinking hot peppermint tea, and laying on my left side.  All these seem to either help get things ever-so-slowly moving through and/or relax my stomach muscles in order to allow the gas to pass more easily.  I apologized to Stella as I tried to soothe her, assuring her I would be more careful in the future.  I could hear/feel her passing little "burps" here and there, and eventually the pain slowly subsided.  Since then I have bought a reusable electric heating pad as well as a large box of Gas-X, which comes highly recommended on the ostomy boards for helping with this painful issue.  I actually did indeed continue to eat plenty of junk food after that with no apparent problems.

Four days later, I had another episode.  I had done nothing to instigate it this time - just had eaten a chicken and cheese burrito, which I'd had plenty of times before.  This time it was much worse than the one on Saturday, though.  The previous pain had just been all-over pressure and discomfort.  This time it was localized, stabbing pain, mostly right behind my stoma, and especially whenever the gas bubbles tried to move or pass through.  I popped some Gas-X and an extra pain pill again, but that didn't seem to do anything.  In the beginning I tried the strategies I'd used before: moving, walking, rubbing, etc., but soon enough the pain became so intense that once I got in a specific position, I literally couldn't move.  If I tried moving even a smidgen, I would scream in pain and had to stop.  At one point I was on the floor curled in a fetal position on my left side for quite a while, but I eventually (through a lot of intense effort and pain) got into a position on the couch where I could use the heating pad, which seemed to help a bit.  But even then any time the gas bubbles would move I would still cry out in pain (a LOT), clutch the pillow, arch my back, and have to start breathing like a woman in labor.  At one point there were even some tears involved.  Eventually, after a couple hours, it passed, but this was one of the most painful things I've ever been through.  Even after the gas pains died down, the area around and behind my stoma remained quite sore for the rest of the night and even into the next morning.  I knew that it was just gas, and I know from doctors and talking with lots of other ostomates online that these type of episodes always go away after the first few weeks, so I wasn't scared or worried - just trying to make it through.  It's been almost two weeks since my surgery, so I'm crossing my fingers that I don't have any more of these episodes before that three-week period is up.

A pic of the JP drain from when
I was still in the hospital.
On Monday the 15th, eleven days after surgery and six days after my discharge from the hospital, I finally got the surgical drainage tube (called a JP drain) removed from my belly.  By this time it had gotten enough wear and tear and tugging (getting caught up in the bed sheets and whatnot), that the little incision it came out of had started to get a bit irritated.  I can't tell you how much I was looking forward to getting this thing removed - it was tedious and frustrating to have to worry about not getting it caught up on something every time I moved, and it was starting to hurt when it did catch on stuff.  All around it was just a royal pain in the butt.  I went in to my local medical center, and my G.I. had one of the surgeons there remove it.  After he snipped the stitch, swabbed the little bit of pus that came out, and cut the tubing, he told me to take a deep breath as he swiftly pulled the whole thing out.... and holy shit, that thing was big!  I'd had no idea how deep that drainage tube was buried in my belly.  When I saw and felt him pull it out, I almost felt like I would pass out.

This is what mine looked like,
except the tubing was a lot longer.
It went about eight inches into my abdomen, and the last several inches was a thicker white plastic sort of vacuum filter thing.  It wasn't exactly painful, but all that movement in my surgical site was definitely extremely uncomfortable, and I had to sit there and take a few deep breaths and recover a bit after he pulled it.  No wonder my abdomen felt all weird every time I moved around, with that much hardware in it!  For the rest of the afternoon, I could feel the empty trail through my abs where the drain had been, and it was all sore every time I moved.  By that evening, though, I had taken my pain meds (which I was not on that morning since I needed to drive), rested a bit, and was feeling much better.  It is such a relief to not have to worry about that thing hanging out of my belly anymore!  Now I will actually be able to move around, go to the bathroom, shower and stuff with a lot more ease.

Other than these "highlights," life in recovery has been pretty uneventful.  I am still getting a great amount of joy from eating whatever food I like and am remaining positive and confident about everything, just enjoying and appreciating this time to rest and recover at my own pace.  I spend a lot of time relaxing in bed, watching TV, cruising around online, chatting/texting with friends and relatives, and taking naps whenever I feel the need.  I do get up quite often throughout the day to get food, go to the bathroom, sit in the front room to chat with my roomie, clean up a bit, feed the dog, or just stretch and take a walk around the house, but before long I get pretty wiped and feel the need to return to bed.

Two weeks post-op: largest incision healing beautifully.
My incisions seem to be healing up beautifully, and I'm really happy with how they're looking.  I think the leftover scarring is going to be very minimal.  The tiny stitches have dissolved from the larger incision near my pubic bone, and the surgical glue has mostly peeled off of that one by now, leaving just a small pink and white line and a couple of tiny scabs where it's continuing to heal.  The smaller laproscopic holes (to one side and in my belly button) just look like little healing scabs still covered in surgical glue.

And my other small incision from which the JP drain was just removed a couple days ago is still covered with the tiny pieces of tape that the doc put there when he removed the drain.  I'm hoping it will heal as nicely as the others, but since it got a bit irritated from the drain and then didn't get any surgical glue to seal it, I have a feeling the resulting scar will be a bit more visible than the others.  I guess time will tell.

Progress during the first week after surgery was so fast that now week two seems to have slowed down and plateaued a bit.  I'm not noticing much of a difference - if any at all - between the days anymore.  My abdomen is still pretty sore and tender when I move around, and I'm still tired a lot.  I think maybe I need to start making more of an active effort to push my recovery along: start doing specific stretches and going on walks outside in order to slowly increase frequency and distance.  Maybe I'll start by setting some simple goals in order to give myself something to work towards.  Here we go -- Goal #1: Put shoes on and walk to the end of the block (it's a long block) and back once a day from now until the end of the week (Sunday), at which point I will start to increase things as long as I'm feeling okay.

Eventually - far enough down the road - this will turn into training for a half-marathon again, but for now... we'll start with a single step.

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1 comment:

  1. UPDATE: The day after this post, exactly two weeks post-op, is when my energy started to return. I have been going on my daily walks, have spent more time up and about, and have been making daily progress again. I feel like I'm finally starting to get my life back. :-)


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