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, October 26, 2012

Recovery: Week Three

  ostomy = short for colostomy or ileostomy          Stella = the name of my ileostomy stoma  

Back when I had my JP drain removed over a week ago, the doctor sent me home with a tiny piece of tape over the incision and told me to leave it there until it fell off.  Well, the tape stayed on, and I had assumed that it was closing and healing under there this whole time.  Tuesday night my attention was caught by pus oozing out through the tape and getting all over my shirt.  At that point I removed the tape and used a clean paper towel to wipe away the rest of the pus, and I saw a very deep, gaping hole.  It hadn't closed or healed ONE BIT.
The next morning, after it had filled in.

I applied some antibiotic ointment, put a clean bandage on it, and felt concerned.  I worried that since it hadn't closed at all yet, if I left it alone it would eventually heal on its own but would leave a pretty bad scar, so I called my medical center the next morning to see if I needed a stitch or surgical glue or something to close it.  They made an appointment for Friday with the surgeon who had removed the drain to glue the hole closed and told me that it would be fine until then.  However, when I took a look at the incision that morning, I noticed that the hole had already started to fill in - it was no longer a deep, gaping hole but looked more like just an infected wound (see photo).  The air must have finally gotten to it when I removed the tape and allowed it to start healing.  I figured by Friday it would be half healed already and would no longer need the glue.

That morning I had also contacted the surgical center at UCSF that performed my original surgery.  When my surgeon's chief resident called me back, she told me that if there is any pus involved, you never want to close the wound.  It is dirty and needs to be able to drain and heal from the inside.  She said that I had done the right thing and now just need to let it heal on its own.  I emailed her a photo of what it looked like, and she emailed back that yes, she could see it was starting to heal and to just continue applying antibiotic ointment and replacing the bandage.   Pfwew!  Crisis averted.

I will continue to show you all photos of all of my incisions and scars as they continue to heal since that was one thing I wondered about before going in to surgery: what will the scars look like, and how long would it take them to heal?  Right now the other tiny laproscopic scar on my side still looks like a small scab covered with surgical glue.  Both the small incision inside my navel and the larger one above my pubic bone have lost their glue and healed up nicely.  The scarring is already pretty minimal on those two - you can't even see the one in my belly button - but I bought some name-brand scar cream to apply in order to hopefully lessen the appearance of all of my scars even more, especially for my stoma scar after my take-down surgery, which I think will end up being the most visible one.  I will show pics of all of them in another week, one month post-op.

Right around week two, it felt like some of the swelling all around must have gone down overnight.  In fact, I know it did because the next time I changed my bag, Stella had shrunk to a smaller size.  I had to use some adhesive paste to make the flange hole for my bag fit properly.  Everything has been digesting and passing easily, no matter what I eat, and even strong gas has not been painful.  I seem to have left the difficult part of recovery behind and come into the smooth sailing territory.

Time seems to be passing slowly and quickly at the same time.  Days are running together, and sometimes I have to think for a minute to remember what day of the week it is.  I sleep when I'm tired, wake up at my own pace, and feel like I'm eating all the time.  I've gained almost ten pounds in two and a half weeks. Of course, I have allowed this to happen by eating tons of comfort foods and junk foods - I was underweight when I went in for surgery, so I have been indulging myself since then with some guilt-free weight gain.  I figured I deserved it after everything I've been through.  However, now that I've gained some weight back, it's about time to slow that train down and start focusing on health and fitness again.  Even though most fruits and veggies are still off the plate as per doctor's orders, I need to start trying to make my diet as healthy as I can and curb the calorie intake a bit.

I have been keeping up with my daily walks.  I started by going to the end of the block and back for several days, and since then I have been going just a little bit further every day or every other day depending on how I feel.  I've noticed I'm able to go further and be a bit more active during the day if I continue taking my pain pills occasionally, so I've been popping one pill about every eight hours or so.  It sometimes feels like recovery progress is going excruciatingly slow, since it's hard to notice much of a difference from day to day, but that is when I have to take a step back and recognize the big picture.  As I write this, it is exactly three weeks out from my surgery.  The day I woke up in the recovery room three weeks ago, my abdominals had been sliced and diced to the point that I could not even sit up in my bed.  Today I walked over a mile.  That is some good progress if you ask me.

Getting ready for my walk
I have also been slowly adding in some other facets to my daily "workouts," one component at a time.  At this point after I come home from my walk, I do a little bit of small ankle/lower leg work in order to prepare my legs for the day that I can get back into running.  This just consists of walking down the hall and back on first my toes and then my heels, first with toes pointing straight ahead, then outwards, and then inwards, as well as 30-second intervals of balancing on one foot at a time on a stability disc.  Since I am prone to shin-splints and other overuse injuries, I figure it's a good idea to lay some solid groundwork while I can for all those muscles, tendons, and ligaments that have been out of use.  I've also added a very *gentle* abdominal exercise, which is just sitting on a large stability ball and rotating my hips in circles: 10 reps in each direction.  I figure that is a pretty safe one I can do to stretch and gently work those abs to promote healing and blood flow, and I'll add more sets over time.  I follow that with a couple gentle yoga poses (a modified sun salutation to be exact), making sure to be very careful with the cobra pose, which is till very tight and tender.  Instructions from the hospital were to not lift anything heavier than ten pounds, so just today I added in a bicep curl and shoulder press with only ten-pound dumbbells.  I am impatient to go even further with my training, but I don't want to push my body too far too soon.  It is still healing from the surgery, and I can't give it too much to do at once, or I will start going backwards.  However, my muscles all over my body completely disintegrated when I was sick and malnourished, and I want to start promoting some muscle tone again, even if it is starting out small.  After my "workout" (I have to keep the word workout in quotes since for me this is not a real workout), I follow-up with a protein shake to encourage muscle growth.

I will get back into "fighting" shape - I can see it, and I can't wait... It may take a while, and I will probably have to start over again after my next surgery - hopefully not quite back to square one - but it will happen eventually.  I will build that muscular body, and I will run a half-marathon, no matter how long it takes.


P.S. - My take-down surgery has been scheduled for December 11th!  That's earlier than I thought it would be, and I'm so excited to have it on the books; I only have to live with the ileostomy for another six and a half weeks, and then it's on to my final stage in this whole process!

Feel free to leave reactions and comments below...
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  1. You are phenominal and I am happy to come and support you!
    Your new Friend,
    dmc from Healing Well!

  2. What happens next?

    1. Next step is to reverse the ileostomy (no more bag!) and hook up the J-pouch for use. Then will come the adjustment period that can sometimes be difficult as the J-pouch learns its new function.


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