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!  


3 comments:

  1. Help! Do you have a picture of a brava sheet? My wife is in so much pain from this terrible leaking thing. Changing the bag 4-5 times per day! What have you done to stop it???

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  2. Her stone is like yours and causing the skin to bleed as well

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