Sunday, September 20, 2015

The deal with the bag

My j-pouch blog wouldn't be complete without a post dedicated to one of the biggest unknowns going into this surgery - what will life be like with an ileostomy, or a "bag".  Yes, it's temporary but frankly, it still scared the shit out of me (bad pun - sorry :)  Until I learned that having the ileostomy is crucial for a good outcome and therefore an important part of the process.

When I started to research the j-pouch, I read a lot about two and three-step procedures.  I kept hoping I would come across a reputable colorectal surgeon who had a track record of successfully completing everything in a single surgery, thus eliminating the need for a temporary ileostomy.  This didn't happen, for good reason...

Once constructed, your j-pouch needs time to heal.  Think about it - you've just made a huge surgical alteration to the architecture and functionality of your digestive system.  The end of your small intestine has been folded over itself, stapled together, then stapled into place where your rectum was previously located.  To expect it to start functioning as a colon and rectum immediately (without leaking stool into the rest of your abdominal cavity) is asking a bit much.   

What I wish I had known before surgery is the ileostomy gets much better as time goes on.  My second day post-op at the hospital I was shuffling around my floor with my walker and the medical tech thinking I had been duped big time into believing people could live a reasonable lifestyle with a bag.  It was always full of liquid, it swung around as I walked and it was so heavy I felt like it was pulling my weakened abdomen to the ground.  It needed to be emptied frequently - you are supposed to empty it whenever it's one-third full, which is very often at the beginning.  It didn't help the overall situation when my medical tech started asking me inane questions like what was my favorite color (umm, I'm in my 30's, lady!) or if I have any children (do you ask your male patients that question?).

Anyways, the point is this - your body adjusts and for me it got better fairly quickly in the following ways:

  • Within days my output decreased and thickened up as my small intestine started to work a little harder by absorbing more water - previously a job handled by my colon.  
  • I got stronger and the abdominal incisions became less painful so that pull I felt in the very early days is now a non-issue.  
  • I was introduced to a variety of ostomy supplies that can greatly increase comfort - like the elastic belt that helps make everything feel more secure, stoma powder which is used on any irritated skin around your stoma, different types of wafers and bags that are opaque rather than the transparent ones they give you in the hospital, which is great because you don't want to have to worry about showing someone your poop every time your shirt goes up past your belt line.  

Here are the basic ileostomy supplies I've grown to love:
 Wafer - sticks directly on the skin like a giant sticker, fitted around the actual stoma
Opaque bag - clicks onto the wafer and has a velcro closure at the bottom to contain output
Barrier Paste - can either go directly on the skin around the stoma or on the inside edges of the wafer to prevent any output from seeping underneath the wafer
Sharp, curved scissors - for trimming the inside edges of the wafer so it best fits your stoma
Measuring tool - I'm told I won't need this in a couple of weeks when the size of my stoma stabilizes after the skin around it settles, but essentially this tool helps me cut an accurate size hole in the wafer for my stoma while it's still changing shape and size

Here are some recent pictures of my abdomen, with and without a shirt on.  The drain site and laparoscopic incisions are scabbing up, the bruises from the heparin shots have faded a bit, the swelling on my tummy has improved and the bag and belt aren't obvious underneath a fairly thin camisole:

At this point I have had my ileostomy for nearly three weeks.  If you asked me now if you can live a reasonable lifestyle with an ostomy, my answer would be a resounding YES.  Even after yesterday, when I was combating dehydration - ok, before you judge that comment too harshly, you should know that dehydration for ostomates is a far more serious issue than it is for people who have a colon - I still feel that way.  I am able to do more with my ostomy than I could even imagine doing in the middle of a UC flare.  Emptying a pouch regularly and having control over when I go to the bathroom is a million times better than racing to the bathroom nonstop, obsessing over where the closest toilet is, wondering when the next hospitalization will be necessary, remembering when the next infusion is scheduled, worrying about the side-effects from your meds, asking yourself whether or not you'll be healthy enough to go on that trip in the future, dreading your next colonoscopy, etc.  You get the idea.  

Recently, I had a conversation with one of my best friends about the powerful ability we have to block bad experiences from our memory.  I can't tell you how many times I've shit my pants, come thisclose to shitting my pants, or had to abruptly leave a meeting at work or tell a coworker or friend to "HOLD THAT THOUGHT!" while they were mid-sentence so I could actually make it a toilet on time and proceed to shit blood, doubled over in pain.  The other day my friend reminded me of a time we were walking back to our apartment building from the gym early one morning and I had to find the best place to take a crap outdoors because I knew I couldn't make it back to my apartment in time.  Who likes making those kinds of decisions?  Interestingly, my friend had to jog my memory (and the puns keep on comin'!) before I was able to recall it on my own.  I conveniently blocked this event from my mind.  I could rationalize this behavior by saying if we obsess over or even occasionally rehash these instances, it can be a real downer.  But I think there's a thin line between being super positive and being in denial. 

When it comes to the bag or severe UC, the bag wins every time.