I'm about 2 weeks out from a LAR with ileostomy, and I'm struggling a lot emotionally with the ileo. Next step for treatment is 6 months of just xeloda, so I'm looking at a reversal probably sometime in February, which I totally get isn't really that long, but like I said, emotionally I'm a mess.
Yesterday I changed the bag by myself for the first time and it was incredibly upsetting and stressful - I've done it twice already with a nurse present but this time didn't go as well - I got the hole wrong so I had to recut while I had the old bag off, then I'd get everything ready to go and it would ooze a little and I'd have to basically start from scratch with the cleaning and the powder and the skin protecting wipe, and that happened about 4 times and I ended up standing there in the bathroom for about half an hour, and then of course I was shaky and exhausted because of the recent surgery.
Then I woke up this morning and it had leaked so I had to do it again. And the experience was similar.
It hurts, there's a raw spot on my skin right where the poop comes out, the nurses gave me some powder to put on it but I only started using it yesterday so no progress yet. And all of the skin under the adhesive is sore and unhappy (not red yet, but it's not happy.)
And there's the emotional upset, which really surprised me - my grandma had a colostomy for 10 years, and we lived with them, so I was expecting this to be no big deal, since I've seen stomas and bags and people taking care of them a lot. But I don't like looking at it, and every time I empty it I hate it, and changing the bag leaves me upset for a couple of hours after...
Help? Advice? Encouragement?
Thank you. You have all been great so far with this truly crappy experience.