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.

Saturday, January 5, 2013

Discharge

Well, today's post will be a bit more positive.  I'm happy to report that things have been going very well, and after twenty-four days here at UCSF Medical Center, I'm finally leaving the hospital!  But here is the update of what has happened in between...

I have been feeling great, eating a lot, digesting, and pooping just fine the last few days.  Trying to keep myself busy with reading, watching Netflix, snoozing, and walking a lot (2.5 - 3.5 miles per day).  We've really just been waiting for my white blood count to get down and stabilize and for the drains on my sides to finish draining the fluid build-up and resolve the infected abscess to make sure I don't go home with an infection or something that could turn septic.  So just a lot of hanging out and waiting lately.




My parents (who have been visiting me almost every day) came in with snacks and sparkling cider to celebrate New Years Eve with me and watch the ball drop at midnight.  We gave an extra bottle of cider to the nurses.


The procedure they took me down for right after my last post (which I originally thought would be a CT scan) the doctors actually call a "tube check."  It's where basically the interventional radiologists (IR) have a live video feed of a low-level X-ray showing on a computer screen so they can see where the drainage tube is in my abdomen.  They can insert a contrast solution through the drainage tube that shows up on the X-ray to see where it goes and discover what the abscess cavity looks like, which tells them if it's shrinking/contracting or if they need to reposition the tube to access the area better.   When they performed the tube check (I was fully sedated this time, thank goodness), they found that both the tubes were a bit clogged, so they replaced both tubes, and they found that the one on the left needed to be repositioned.

After that procedure, my white blood count continued to go down, which is good.  They did another tube check on Wednesday (three days ago), during which they were able to remove the drain on my right since it was done doing its job, and they replaced and repositioned the one on my left again so that it could reach to a different area down in my pelvis where additional fluid had built up.  The next morning my white blood count was down to normal range (for being on steroids, anyway).  The doctors wanted to make sure I could get off antibiotics and still maintain a stable white blood count, so that morning they took me off of the antibiotics and detached me from the IV cart. (Yay!)

My white blood count stayed pretty steady, and the left drain never drained much of anything out of it, so after the nurse flushed it yesterday morning to make sure it wasn't just clogged and still nothing came out, they finally removed it yesterday evening.  I was SOO relieved to have it out of me and especially to not be going home with it in, which they said could have been a possibility.  At that point I was detached from everything except the PICC line that was still in my arm, which they removed this morning before discharge.

I forgot to mention in my previous post that about four or five days after surgery, the doctor took the staples out of my surgical incision where the stoma used to be and replaced it with strips of tape.  I'd heard removing the staples could be painful, but it wasn't at all.  I was told to leave the tape strips there until they fell off, which finally happened yesterday evening.  (It would have happened a lot sooner had I been showering, but I've been sticking to sponge baths due to the drains, dressings, and PICC line.)  So here is a photo of what the incision looks like twenty-three days post-op.  It is two inches long.  (Just for comparison, my larger incision from the first surgery, just below this one, is three inches long.)

Meanwhile, my j-pouch has been adapting and learning to function!  This part is exciting for me.  The first couple days on solid food, I had to strain/bear down a good amount to be able to empty everything out, which ended up causing what I believe was maybe a hemorrhoid.  Either way what I felt for a day or so was an intense burning sensation inside my anal canal every time I had a bowel movement.  The outside skin was fine since I'd been using the baby wipes and barrier ointment provided by the hospital to prevent "butt burn", but it didn't reach inside where this particular burning was.  Well I decided if it was a hemmie, I needed to stop bearing down, which I've heard you're not really supposed to do much with a j-pouch anyway, so I tried that for a day.  Even though I felt like I had to go a bit more frequently since I wasn't able to empty everything out each time, it helped, and the burning sensation disappeared.

The milkshake was amazing.
After that things improved even more, seemingly overnight, and for the past few days I have had a perfectly functioning j-pouch.  I am surprised at how well it works this soon after starting to eat solid food.  I haven't been able to count exactly how many BM's I'm having a day (the nurses erase my tally on the white board every time they record it in the computer), but I would estimate 5-8, which is average for someone with a j-pouch.  I will start another tally when I get home so I can give you a more accurate number on my next post.  I have no pain, no urgency, no leaks whatsoever.  I have complete control and can hold it for as long as I want or need, and I can pass gas easily whenever I need to without risk or worry of passing anything else along with it accidentally.  Of course, this may be due to the fact that I had a lot of practice at that particular skill during my seventeen year stint with ulcerative colitis, but either way I'm happy with the results.  Everything functioned great even after eating the fast food my parents brought in one day and the salted caramel chocolates - so good!  (Keep in mind that even though I was still in the hospital, this was like three weeks post-op, so the majority of the swelling had gone down by then.)  I know there will most likely be a good amount of back and forth during the first few months;  I will have to see how different foods affect how my j-pouch functions, and other issues may still arise down the road, but if it's functioning this well after only a few days of solid food, imagine how it will adapt and mature over the next year.  I am happy and excited about starting a disease-free life, and now that the surgical complications are out of the way, so far I am a very happy j-poucher!

Before moving on, I feel I should pause here and explain something that no one ever shared with me before I had surgery.  Because I am now pooping with completely different equipment, all of the sensations and muscle commands involved are different.  (I discovered this while passing mucous daily in between the surgeries but wanted to see how it compared to passing stool.)  Think about it - this is something I've done multiple times a day for my entire life (that's about 30,000 times) - it's as natural as breathing - and suddenly I'm doing it with a new body part.  It's kind of like trying to brush your teeth with your left hand: the body part functions just fine, and it's doing the exact same job, but it feels very weird.  It's a bit awkward and clumsy at first and will take some practice to get really efficient at it.  Because the muscles and nerve endings around the rectum (where your poop is usually stored before evacuation) are no longer there or connected, I now can't really feel anything before the actual anal canal.  Another j-poucher described it as feeling like someone else doing the work/pooping.  In order to go, instead of flexing the muscles around the rectum, I now have to relax all the muscles around my pelvic floor as much as I can while gently flexing my abdominal muscles.  It takes a little practice to be able to really evacuate everything in there.  Some people have tricks like coughing or standing up and sitting back down.  So if you're going to have surgery, really feel and remember what it feels like to poop before you go in, because you will never feel that sensation again.  I kind of wish I had paid more attention the last time I pooped before surgery... There was a short moment between my surgeries where I did have to grieve this aspect just a tiny bit.

Excited to be leaving.
Anyway, I am so excited to be going home today, but before signing off for today's post, I have to stop here and give a shout out to the nurses and staff on the 5 North wing of UCSF Medical Center at Mount Zion.  After spending over three weeks in the hospital here, I have had many of the nurses on this floor, and almost all of them have been amazing.  They are caring, supportive, and respectful, getting me whatever I required and helping me in any way they could.  I can tell they really care about their patients, and they always listened to my needs.  I went through some pretty rough times while I was here, and they all did what they could to make me as happy and comfortable as possible, which really made a difference in my stay here.  I know they put up with a lot in their line of work and see people at their worst, but they still manage to have a positive attitude and show kindness and attentiveness to the patients in their care.  The doctors pop in and out, but the nurses are really the ones that make a world of difference when it comes to those of us on the receiving end.  So nurses of 5 North, I know some of you will be reading this, and I want to say thank you again for the care and compassion you showed when taking care of me.   <3


My posts from now on will become a little bit less frequent as I get back into life with a j-pouch, but I will continue to post photos of how my scars are healing over the months and updates about how the j-pouch is functioning and maturing as I start back at work and get back into my fitness and athleticism.

Here's to the first day of my new life... Grabbing 2013 by the horns!!!  :-D


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7 comments:

  1. I am really in awe reading this post, u are the strongest person I know and ur dedication is incredible. I wish u the best in ur endeavors and most importantly, a healthy life :)

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  2. Congratulations!!! I am so happy to read this post, I have been following your story for months here and on HW and it is truly inspiring :) I hope you continue to post but I bet you will soon be too busy with working, running, living life, and freely eating burgers and fries...

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  3. You are wonderful. I wish I could meet you one day.

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  4. Thank you so much for keeping this blog. My daughter has about reached the end of what can be done medication wise for her. Learning about your experience has been very helpful and informative for both of us - much more so than hearing about it in the abstract. Good luck to you and keep us informed on your progress - your spirit and positive attitude are an inspiration.

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  5. Thank you all for your words of appreciation and support. It means so much to me and makes all the time I spend on this blog totally worth it. <3

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