Postby JudeD59 » Fri Aug 21, 2015 11:56 pm
I knew going in that my thin skin on my stomach was going to get irritated very quickly from the adhesive on the bags. They put a bag on after surgery on Wednesday, put on a new one on Thursday to show me how to do it, then decided to put on another new one on Friday because I was going home and they wanted to send me with a fresh bag. Then Sunday I woke up to my first major leak and had to change it all myself. When the visiting nurse came, she said I did a good job cutting it to size, but the waste had worked it's way down through a small fold in my skin and it had to be changed again. It wasn't leaking onto my clothes or skin, but was bad enough that it would irritate the skin it was touching. That is five bag changes in six days next to a 12 inch incision.
On Tuesday, the visiting nurse came again to check things out and she found a small leak under the wafer, so she changed it again.
Then on Thursday, I went to the surgeon and had the drain and staples removed and they said everything looked good. As soon as I got home, the stoma nurse came and changed the bag again so she could examine the area and work on showing me how to do it myself. After she left, I was so excited to have the drain and staples out and to be able to start to really heal. I was lying on the couch and when I got up, the whole bottom half of my nightgown was drenched in pink liquid. I lifted my gown to see where it was coming from and there was a gaping hole in my incision large enough to put a golf ball in.
I called my surgeon's office and they said to just put a compress over it. Are you serious? No other instructions, no come on in to see us, nothing. So I called the visiting nurse and she said she would come by. She cleaned it up, packed it, and put a waterproof bandage over it. Apparently, the drain hadn't work properly to remove the fluids, so they built up until they put enough pressure on the incision to force it open. The nurse called the surgeon's office and told them they needed to see me. They gave me an appointment for today. The nurse said that if the incision split more or gushed more fluid, to go to the emergency room last night, but luckily, that didn't happen.
As I was getting ready for my appointment, the bag the stoma nurse put on popped a big leak and I had to change it. As soon as I lay down on the surgeon's table, I could see poop leaking from the side of the new bag, so the surgeon cleaned it up and changed it again. She looked at the wound and repacked it and said it would have to be repacked everyday until it healed from the inside out. As soon as I got home from her office, I checked the bag and it was leaking again. New bag held up until right after dinner when I felt incredible burning and found yet another leak. The skin is so raw and sore, I decided to lay on my back on disposable pads with gauze around the stoma to catch leaks and let it air dry for a hour. I put another bag on, but the cut wasn't quite right, so that had to be pulled back off and for the sixth time in a day, I put on a new bag.
I can't begin to explain how raw and sore the skin is under the wafer and now I have a gaping incision to deal with, too. The surgeon theorized that the fluid build up caused the wafers to bulge and cause leaks, which caused my skin to produce fluid to protect itself, which is causing the wafers now to pop leaks.
Now a visiting nurse is coming tomorrow to repack the incision and to take the bag off once again to try to find a solution. To say that having them peel the wafer off my raw, traumatized skin is torture is an understatement. I don't have any appetite anyway, but I've been making myself eat and drink. Now I feel like anything I put in is just going to burn like hell as it leaks it's way out and I don't feel like eating anything. They have tried the molding clay and the barriers. I asked them to try the adhesive barrier but they said it can make the wafer come loose. Tomorrow she is supposed to be using the powder to see if that helps.
I feel like I resigned myself to having the bag, emptying the bag, and dealing with some pain on removal, but this is really depressing me. Every little move I make, I can feel the adhesive tugging at the sore skin. I'm not sure how much more I can take.
Sorry to be such a Debbie Downer, but this never-ending pain is wearing me down.
Any tips or suggestions?
Judy
56 yrs old, wife, mother to 4 daughters
RC Stage II T3N0M0 DX April 2, 2015
6 cm. mid-rectum-CEA 121
Xeloda and radiation finished 06/15/15- CEA 242
CEA right before surgery 81
LAR performed 8/12/15 Temporary ileostomy
CEA 10-21-15 1.6
PET scan 11-4-15 All clear
Port installed 11/11/15
Folfox started 11/18/15
Folfox stopped due to bad reaction
Reversal 2/17/16
CEA 2/3/16 1.7
CEA 3/31/16 1.3
CT Scan 4/12/16 All Clear
Port removed 4/21/16
CEA 5/24/17 1.4