Saturday, November 21, 2015

Countdown to Takedown

My second surgery, the ileostomy reversal or "takedown", is rapidly approaching - just two more days - and I have a LOT of updates for you.  I haven't been posting as much because after I got a better handle on living with an ileostomy, I was busy....well, living!  So, let's get to it...

In one of my previous posts I promised updated pictures on my scars and stoma.  I'm excited to share the news that my peristomal skin looks much better.  For me, what worked best was first "crusting" the skin around the stoma (basically sprinkling on stoma powder, lightly brushing it off, then dabbing the area with a no-sting barrier wipe -- possibly repeating a few times if my stoma was "well-behaved"/not expelling a lot of output) after removing the appliance, cutting my own wafers to accommodate the oval shape since pre-cut wafers are all perfectly round, liberally smearing Adapt paste around my peristomal skin, applying a convex wafer and bag, and being diligent about changing the appliance every other morning before breakfast.  It took me awhile to come around to changing it so often but with my opening pointing downward, the barrier paste really takes a beating and changing every other day made my skin much happier, so it's worth it.  

On a good day, changing the appliance takes me 20 minutes start to finish.  On a bad day, (and by that I mean when my stoma is super active during the appliance change) it takes me around 40 minutes to allow for enough time to jump in the shower to occasionally rinse off and have plenty of "serenity now" moments.  

Also - not to brag or anything - but I fortunately never experienced a leak. Which is awesome, in hindsight, not only because it would obviously be an unpleasant experience and mildly terrifying but because I became pretty brave (maybe too brave) about leaving the house without a spare appliance in my purse.   Here's a current picture of my stoma:

For comparison purposes (and for old times sake!), I'll re-post the before picture below.  You can ignore the skin tone of my tummy -- I took these pictures in different rooms with very different lighting.  My skin was never reallyl as bright yellow as the below picture suggests.

Also note the surgical incision site toward the upper left of the photos.  Big improvement. You can also see the belly button incision in the top photo as well.  With all the stuff I mentioned about stoma care, definitely keep in mind it's incredibly individual so the best advice I can really offer is remain patient, experiment with different products available, change your appliance in the morning before eating or drinking anything, and hang in there.  
Here are some current pictures of my other incision sites:

In preparation for surgery, my surgeon ordered a urinalysis and urine culture test to be completed two weeks prior to my surgery date so there is time to identify and address a potential UTI.  Unfortunately my PCP who I had run the tests proved to be completely incompetent -- saying they lost my sample after I left numerous messages for them to call me, calling me later to say they found it but they were concerned because there was blood in my urine (I was on my period and explicitly told them this before providing them with the sample), then days later they called me to say the lab results were "inconclusive."  WTF?!  After a few tense phone conversations, I went back in, provided them with another sample, had them expedite another test and the results came back fine.  If I could reiterate a major lesson learned throughout this process it would be this: be your own advocate.  The surgeries and appointments and tests leading up to all of it and following all of it are a lot to take in, require a tremendous amount of organization and coordination, and at the end of the day, you are responsible for looking out for yourself.  

So, after that annoying incident, it was time to begin the rest of the pre-op appointments and procedures.  Many of the pre-op appointments were identical to the first surgery, like the lab work and pre-operative evaluation.  The only differences were the meeting with my surgeon where he performed a pouchoscopy and the water-soluble enema test performed by radiology to make sure the pouch doesn't have any leaks.   

I had the enema test first.  I went down to radiology, changed into a hospital gown, and was called into a room with a x-ray machine and a table/bed.  Basically, they had me lay down on the bed and we viewed (yes, I got to watch too!) the images of my j-pouch and the piece of my small intestine that leads all the way up to my ileostomy filling up with the solution.  It oddly felt similar to how any other enema feels, just some cold liquid, so no discomfort, a little pressure, and absolutely no urgency in evacuating the liquid once the test was done.  Surprisingly, it took me about five seconds after I sat down on the toilet, took a deep breath, relaxed everything, and it all came out.  Prior to surgery I heard emptying a j-pouch is similar to relieving your bladder and based off my very limited experience at this point, I have to say that description was exactly how it felt for me.  

The pouchoscopy was just like the one I had several weeks following my first surgery when the j-pouch was created, but the staple lines in the pouch were far less evident and even my novice eye could tell how well it had healed up.  The pouchoscopy was quick and painless, and the pouch just looked like pink, healthy tissue.

There was of course the other typical pre-op stuff like signing the consent forms, verifying information, etc.  All in all, it took about a full day.  I can eat normally the day before surgery, except I will take a course of antibiotics and take one and a half tablespoons of milk of magnesia at 5pm to clear out my system.  Only clear liquids after 5pm and nothing after midnight.  Should be a cakewalk compared to some of the colon preps I've had in the past! 

Thankfully my surgery is first thing in the morning - no time for pre-surgery jitters AND not a prolonged period where I am waiting around hungry and thirsty.  Anybody who knows me would readily confirm how much of a nicer person I am to be around when I've had enough to eat and drink.    

That's all for now!  When I write the next post I will officially be a j-poucher.

Saturday, November 14, 2015

The Power of Imodium

As I may have mentioned earlier, thickening up ileo output is key to prevent dehydration (which is not only annoying in the sense that it can cause you to be dizzy and may contribute to leaks underneath your ostomy wafer, but it can also lead to serious kidney issues for more severe bouts of dehydration over significant periods of time).  My output was really runny at the beginning, then sort of runny, and I was able to gradually thicken it up by keeping certain staple foods in my diet - mainly bananas, applesauce and mashed potatoes.  As I've expanded my diet, however, I've had to pop an Imodium or two to get me through a rough patch.  

It helps me almost immediately!  I don't know if this is the case with everyone but Imodium is typically recommended for folks who no longer have their colons and have loop ileos especially in the post-surgery adaptation periods.  I know some people who have active UC use Imodium to help control their symptoms as well; however, my GI is completely against using it for active UC because it is simply masking symptoms and therefore can screw with a treatment plan as you'll likely underestimate the amount of inflammation and severity of disease.  Also, I've heard it can contribute to toxic megacolon, something you definitely don't want to have to deal with.  

Anyways, after surgery, for whatever reason - maybe because I am simply loving this no med thing and taking Imodium feels like taking a med as compared to the act of eating a banana - I tried to rely solely on the thickening foods to help beef up my output.  It would be great if that tactic worked off the bat all the time, but since it hasn't, I've (thankfully) come around to using Imodium occasionally.  No sense in resisting help when it's needed!