Yeah, its gross.
My little stoma has become a mucus monster. I used to be able to cover it with 1/2 a nursing pad and be good for hours and hours. Sometimes after I emptied my pouch if it wasn't that wet, I'd just keep it on. Not now. Oh no. Now, I have switched to cutting up feminine pads to cover my stoma and I am saturating them. Just when you thought I had stopped writing about gross things!
Sometimes If I don't completely tape up the pad covering my stoma when I lay down to sleep I can feel it trickling down my belly. Yes. And it is all just watery mucus. So I guess I will be thankful my valve is not leaking. I am having no problems in that direction.
But all this moisture means I am having more skin problems that just won't seem to go away. I 've been getting these painful gaps between my stoma and the skin. I am faithfully sprinkling them with stomahesive powder or Arm & Hammer medicated powder. Doesn't really help. Burns a lot when it hits the sore spot. Also I'm developing some granulated tissue from all the moisture. So finally I gave in and over the summer I went in to see the great stoma nurses at the Cleveland Clinic, twice.
First they tried painting the surrounding area with silver nitrite to cauterize the skin and cause the new growth to cover the painful open area there. It was crazy looking. All the skin that got painted turned black as as silver nitrite started working not ischemic, thats just how it works and I was warned but that didn't stop me from getting a little anxious about it!
Anyways, that didn't work. Ended up going back and having a colorectal surgeon take a look at it. I met Dr Ashburn since Dr Remzi didn't have any openings for like 4 months. She was really nice though and I liked her. She injected the area with a steroid and that hurt like the devil.
And it reminded me when she was doing it that Dr Remzi did a similar thing (if not the same thing) not long after I got my k-pouch. So I looked back through my blog and sure enough, Sept 2007 Dr Remzi injected something (probably a steroid) into a separation. I didn't have any problems after that.
This time that steroid injection worked too... for a few months. But now I'm still having painful sore area of separation. Some days its worse than others which I cannot explain. I sill powder it faithfully. I even bought some liquid bandaid to see if that would sort of protect that area and the problem is that also stings like mad when I apply it to the open area so I am reluctant to keep it up.
I really hate to see the Dr again so I think I will just continue to deal with it unless it gets worse...
But this morning I woke up again and my pad was just soaked with that watery mucus and its just gross. I don't get it. When did I become a mucus monster??
Well, I will focus on the good things. Though I am a mucus monster my k-pouch is in good working order and well, that's pretty fantastic.
3 comments:
Thank you for blogging about your K-pouch. It is interesting to follow someone else's journey. I've had a K-pouch since I was 21 years old. After 35 years, I'm having my first revision at the Cleveland Clinic next week with Dr. Ashburn.
I would be interested to hear how it goes. please keep me updated!
Sorry to hear about all your trials- You haven't blogged in awhile- hope everytghing is ok? Soundsl ike you've been through hte ringer- I keep gettign brochures for BCIR- and thought how nice it owuld be to not have to wear a pouch- but I really really dread the recovery time it woudl take- and possible complications- also- havign Crohn's, the K pouch could becoem ifnected and I'd have to get more major surgery to rverse it back to iliostomy- It's a big decision- Doubt I will do it- but wanted to just thank you for documenting your oeprations- it's been a help in deciding-
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