Sunday, October 25, 2015

8 week miscellaneous

I can't believe it's already been eight weeks since my first surgery.  It has been a lot less eventful than I anticipated.  Here's the scoop -

  • I traveled on an airplane with my ileostomy.  I thought this would be a *much* bigger deal than it turned out to be and was pleasantly surprised.  Since I have global entry, the security process is generally no big deal and I can say the same for my latest trip.  The only differences were that I asked the tall, brawny man in front of me in the security line to handle my luggage before and after it went through the x-ray machine (you will be amazed at the people who are happy to help you with things like that) and when I used the bathroom on the plane I emptied my bag.  Just fyi -- to all my fellow germophobes out there -- the tiny airplane bathroom is not the place to experiment with different emptying techniques.  I tried to empty standing/squatting facing the toilet, leaning kind of over the it, since I thought this would be a cleaner way to empty in this situation.  I was wrong.  Stick to what you know in the bathroom (or really what I am saying here is just suck it up and sit down on the toilet) and try not to get too hung up on how disgusting it is in there.  You can probably shower shortly after you get to your destination.  :)

  • I wore a bathing suit in front of people.  Granted the beach wasn't packed, but I was in public and nobody noticed that i had a very slight bulge under my suit.  My friends assured me that no one could tell and after a few minutes I felt very comfortable walking around without thinking a thing of it.  Due to the high frequency of my ileostomy output (I feel like I am ALWAYS eating pretzels and drinking Emergen-C to combat dehydration, which helps, but it's a daily thing for me), I went ahead and put high wasted shorts on when I sat down for lunch so I wouldn't have to think about what the bag would look like under the bathing suit as it started to fill up.

  • I started working out again.  Nothing crazy - no marathon training anytime soon - but it does feel great to get into a routine where I go for my walk in the AM, work, and hop on the elliptical machine for 20-30 minutes mid-day or in the evening.  My energy level is much higher than it was even two weeks ago, and with the takedown surgery rapidly approaching (4 weeks away!), I have become more cognizant of getting into a better physical shape so I can be in the best position possible to bounce back from the second surgery.  

  • My diet rapidly expanded after week 6.  I hear that I could've been bolder with my diet before I even got to week 6, but I didn't feel comfortable with it, so this is an area where I decided not to push myself.  Whatever hesitation I had before magically disappeared and I am now enjoying most foods  (still no popcorn but, hey, you've gotta pick your battles and this was a nonstarter according to my WOCN ).  Finally adding variety to my diet a bit was a relief for several reasons; mainly, I missed vegetables!  Secondly, I feel less "annoying" by asking friends, restaurants, whoever to make exceptions to whatever it is we are eating or I am ordering.  I have yet to eat a gigantic salad packed with raw veggies, but I will eat the small side salad next to my omelet (sans mushrooms) and order dishes with cashews in it, so in the scheme of things, that's pretty cool. 
Also worth mentioning - my scars are healing up really well.  I'll put up some pictures in my next post.  Until then!

Sunday, October 4, 2015

Stoma woes + my first pouchoscopy

Bad news first: my peristomal skin officially hates me.  As I may have mentioned before, loop ileostomies tend to be trickier than end ileostomies.  Loops have the two openings that are brought to the surface of your skin and the active opening is not as clear and neat as the opening for an end ileostomy.  The end ileos are one intestinal opening brought to the surface, "cuffed", and attached to the skin; they typically protrude more and send the output straight out, away from the body and into the bag.  

I'm having difficulty keeping my output away from my skin because my ileostomy is basically retracted and pointing down, directly at the skin attached to the bottom of the stoma.  If you haven't experienced this delight on your own, you can only imagine how much fun it is to figure out how to keep hot, acidic output off of hyper-sensitive, bleeding skin, while hot, acidic output is literally eating away at your hyper-sensitive, bleeding skin.  Convex wafers have been a godsend so far and thanks to friends at HW I have discovered a new product to help protect my skin - Brava protective sheets.  I applied my first one today and loved the soft texture, flexibility and how durable the product felt.  It goes under the wafer and I am keeping my fingers crossed it doesn't hurt like the devil when I have to peel it off of my skin.

Told you it wasn't pretty!

Now for the very good news: my four week follow-up appointment and pouchoscopy procedure with my surgeon.  First, we went over my questions...

Q:  I understand my pathology results conveyed no signs of Crohn's disease or cancer.  Was there anything concerning about the appearance otherwise?  
A:  Well, your colon was clearly damaged from UC-related inflammation and showed active signs of disease, but other than that - nothing worrisome.  

Q:  Can I go swimming (with the bag on of course), get the flu shot and get the shingles vaccine? [note: I was disappointed when my GI advised me against the shingles vaccine when I was on Remicade, since you should not get live vaccines while on a biologic drug]
A: Sure, all of that is fine.

Q: Now that step 1 is over, what are the various appointments/protocol until step 2/the takedown surgery?
A:  Today I am going to do a quick scope called a pouchoscopy to see how the j-pouch is healing.  Assuming it looks good, we will set your takedown surgery date and pre-op appointments a couple of days in advance of surgery, just like the first.  The pre-ops will include another pouchoscopy and a test where we insert a water-soluble mixture and take x-ray images to make sure your j-pouch doesn't have any leaks.

Q: What existing incisions are used for takedown?  Will any new incisions need to be made?
A:  I'll just use your stoma site.

Q: How long does it take the stoma site to heal?  Do you staple it shut?  How does that work?
A:  It should take about a month to heal.  I do not staple it shut, I leave it open and will pack it before you go home.  I don't staple or sew it closed since the bacteria needs to be able to get out and the cosmetic result is better if it heals naturally.  You'll need to change the dressing regularly when you get home to keep it clean.  I recommend a belly wrap to wear over the dressing to protect against chaffing.  

The pouchoscopy went by quickly and felt just like a flexible sigmoidoscopy.  A tiny camera at the end of the scope allows us to see the newly constructed pouch on the monitor in front of me.  It was so cool!  My surgeon was pleased with what he saw and how well I am healing so far.  He even said I was healing "extraordinarily well" and should have "very good results".  How about that!  I was thrilled.

Before I left he asked how I was adjusting to the ileostomy.  I told him it was OK, just trying to figure out how to keep the skin around the stoma healthy.  He smiled and said that was a common concern for most people within the first few months of having a loop ileo and before I know it, it'll be takedown day.  "Just seven more weeks!  You're almost halfway there." he said.  It was an excellent point.  

My takedown surgery is scheduled for late November!