Posted 12/11/2012 5:30 PM (GMT 0)
Hello there, I have never blogged before :)
My mom recently had her entire colon and about 10cm of her small intestine removed and was left with an iliostomy. We are about 2 week out from the hospital and have had quite a time. We were given a crash course in ostomy maintenance at the hospital that lasted about 20 min... the second day we got home her bag sprung a leak and I had to change it myself. Over the past few weeks we have been struggling through leakages, bright red irritated weeping skin, stoma adhesive that burns the crap out of her, etc. Last night we were finally visited by a WOCN!! It was so glorious to feel like we had someone who knew what they were doing and she taught us a lot of information. She set us up with a convext wafer (duh!! that made total sense as her stoma is flush with her skin and was clearly leaking onto her skin after every bag placement), a malleable ring to go underneath the wafer and some non-alcohol based skin barrier wipes. Last night my family was able to breath a sigh of relief as it was the first time we were not living in fear of painful leakages and dreadful bag changes.
The Wound Care Nurse also told us that we should be drinking a lot of water, this is something we were told many times before but she told us that it was about 16, 12oz cups a day we should be trying to get into her. My mom has struggled to reach the goal of 7, 12oz waters a day we set for her once out of the hospital so the idea of 16 cups a day is way too overwhelming and doesn't seem feasible. After the nurse left last night we pushed for her to drink more and she went to bed saying "I feel like I'm drowning in water".
I suppose my question for this blog is how do other people do it? She has an iliostomy so water in incredibly important and she understands that rationally but the physical act of drinking that much water is weighing heavy on her mind and causing a lot a stress on a day that should be more positive as we have figured out our leaking problems.