Stoma Stories, Episode 2: This Sucks

I hate changing my ostomy bag. There I said it. It is by far the worst part of this entire experience. I dislike just about everything about it. I don’t like ripping the adhesive tape and wafer from my skin (it hurts, even with adhesive remover). I don’t like looking at my exposed stoma. I don’t like the fact that I have no control over my output, which continues to flow as I try to change the apparatus (though I do my best to time my changes for relatively “quiet” times). I don’t like having to manipulate the stoma to look for and treat irritated skin. I don’t like how the whole process feels both physically and psychologically. I can deal with emptying the bag (everyone poops), but for whatever reason, changing the apparatus really bugs me. It’s the one time when it’s abundantly clear that I’m not normal. It’s the one time when all of my fears about this surgery come to the surface (What if the J-Pouch doesn’t work and I’m stuck with a bag the rest of my life? How can I possibly go to work or out in public with this f’ing thing hanging from my hip? Etc.). It sucks.

Last night, I was changing the apparatus in the shower (per the instructions of my NP to help deal with my skin irritation). Removing the wafer hurt, likely due in part to my stitches separation and resultant skin irritation. Stretching the skin around the stoma to aid rinsing hurt. The skin irritation around the stoma looked (and hurt) as bad as it did on Friday, so I’m not yet convinced the stoma powder is doing the trick, but at least it doesn’t appear to be getting worse. I have no control over the output from the ileostomy, so I had a steady stream of stool running down my stomach. Even worse, there was blood in the stool. I couldn’t tell if the blood was actually in the stool, or if it was coming from the surrounding irritated skin. Either way, it is apparently no cause for concern unless it persists or becomes A LOT of blood. Easy for them to say. They’re not in the shower with a f*cking hole in their side and bloody sh*t running down their stomach. The sight (and emotions) of it all was more than I could bear. I broke down, turned to my ever-patient wife and said, “This is my life.” It sucked. She reminded me that it was all only temporary, which was a good reminder. But it still sucked.

I got out of the shower, dried the stoma and surrounding skin (constantly having to clean the stoma due to additional output), applied Cavilon No-sting Barrier Spray and stoma powder, and attached the new bag (placing a heating pad on it for 5 minutes to ensure a good seal with the wafer). Fully reassembled, I instantly felt better. And I’m in a much better place this morning. I can’t quite put my finger on it or articulate my feelings, but there is definitely something about the changing process that I’m having a hard time dealing with. Maybe I feel exposed or incomplete or defective or helpless. I’m not sure, but I don’t like it. But there’s no alternative right now, so I just have to deal with it. And I will. Hopefully, it will get easier, but even if it doesn’t, I should only have to deal with it for another 6-7 weeks. So I’ve got that going for me. Which is nice.

UPDATE: I should note that all of the above, and everything I’ve experienced since my surgery, is still waaaaay better than being sick with ulcerative colitis. It’s certainly not perfect and there are definitely some issues I still need to work through, but I’m not sick. I can live a life.

This entry was posted in Ileostomy, J-Pouch, Stoma Stories, Support, Ulcerative Colitis and tagged , , , , . Bookmark the permalink.

One Response to Stoma Stories, Episode 2: This Sucks

  1. Pingback: Update: Back to UCSF | Know Guts

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s