After surgery in March, I recovered SHOCKINGLY fast. Within 2 weeks I was off all pain meds and having a grant old time. Not being able to workout has been a bit of a torture, but I’m dealing with it. You guys saw my post about the stoma separation, and since that time my stoma has retracted into my stomach almost all the way. Its super tiny. So pouching with the stupid stoma plus the ulcer has been less than a party. Since surgery I have been living with constant leaks, max 2 days until it leaks sometimes less. One time it leaked 2 times in the same day. Its been miserable. I feel like I’m living with UC again, I am afraid to leave the house and do anything.
There have been events I’ve skipped and most recently something I had to leave early because of a leak. Its humiliating all over again. Its because of this and the separation and all the other stoma weird things that I’ve been mega depressed lately. I feel like I’ve stumped the stoma nurses because they are all trying many different things, and right when we all think we’ve got it….it leaks again. Needless to say June 7th can’t come any faster. Oh yea…June 7th is my next surgery, pending an x-ray on my post op appointment goes well.
So I’ve been trying EVERYTHING. I’ve sacrificed my pouching system, which I love. I’ve used barriers, convexity, foams, blah blah blah. I’ve even succumbed to the dreaded ostomy belt. Here is why I hate these stupid things. To begin, they are seriously ugly. Second as a girl with a waist and hips, they never stay in place instead ride up my waist thus making them useless. Next, in order to get the damn pouch to work on me right now I have to make it SUPER tight. Like…girdle style. Except because they are so thin, they cut you right in half, make an awesome shelf of fat on the top. Its hot, seriously.
Here is why I hate them the most. Lets say you’re laying down with the love of your life and you’re face to face, and you’re all “I love you”, “No, I love you more”, “No, I love you most”…and you’re hugging and touching and its a magical moment. Then your love goes to rub your back and their hand gets caught on your damn ostomy belt. Yea. Hot. Like I can hide my bag away when we’re close, and make it so that isn’t something I have to worry about but this stupid belt is ALWAYS THERE. Granted…I think it potentially works. But can’t it be an invisible force field that doesn’t ruin a moment?
Lets just say that things have been difficult. I had to take 3 weeks off in the middle of a semester of grad school, I have these pouching issues, and I’ve been WAY more dehydrated than usual. Yes, I know ileostomies and lack of colons make you dehydrated but I’m talking so dizzy you fall, can’t talk outta breath dehydrated. Its just been one thing after another, but honestly, what do I expect. This is me…nothing is every easy or pleasant.
All of my complications have really started to make me nervous for this jpouch. I feel like its doomed to fail because everything else does. I know I’m in my post surgery depression phase, but still…it all scares me a little. Er…a lot.