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.
The loop sucks!!! I had lots of leakage too and would panic because I would only get 10 bags a month. Sometimes changing the thing 2 X’s a day… not enough bags. Convex and the dang belt worked for me. Sometimes I would only have to wear the belt for a few hours to get a really good hold/seal working and then could take it off. On and off, on and off… it just sucked. Hollister convex was the only system that worked with my loop and I am (and was) a lover of coloplast. I don’t like how the hollister bags bunch up, they never seem to be flat… but maybe that’s just me.
The feelings about connecting the ‘j’ I think are so normal. And really you are young and healthy so for your own processing you have to at least ‘try’! So mine didn’t work, I can accept that because I tried everything all the way to the end~pun intended 😉 There is nothing easy about what we all go through. Maybe some easier times here and there, but it all sucks. I guess we make up in our minds how much sucking we will put up with and then reside to ‘it is what it is’. I still wish I had a nice functional colon, but I don’t. I hope sometime soon I will accept this ugly stoma-it ain’t going anywhere!!! I know how you feel and when you have your ‘j’ and it works for you, you will be so thankful you took the chance!
The issue is going from an end ileo to a loop ileo…. i had to have a picc line put in after #2 just to get out of hospital so I could do bags of IVF at home and at work… i had a special chair in my dept conference room so that I could sit by a hook I had put up so I could hang my bags of fluid. If you still have your picc see if the doc will order ivf or lactated ringers through home health care… i kinda miss being able to run fluid when I want. If they took your picc line already ask for another one and request orders for home health care to deliver the bags of IVF!! Don’t worry about connecting the jpouch. It will work. You need to have some faith. I get the frustrations you are having with the bag not sealing like it did before. My bag burst on me at work 3 days before take down… I had to ride home in my nice sports car with a towel around me crying. The belt suck but it works. This is not forever – you need to keep that in mind. I am very proud of you for getting back to a sex life with the pouch… I waited till well after take down! I went almost 2 years without sex with my husband!! You are a very strong woman and you will get through this! I promise you. I still got dehydrated after take down, so be prepared for that too. Drink the Gatorade G2s. it is the low cal Gatorade. It really helps! Bag wise, I used one that pushed out the stoma so it drained more into the bag than into the seal. It was sur-fit durahesive wafer w/convex-it. I also used the eakins seals with the paste and the belt. None of it is super sexy but for the couple months I had to work with the loop ileo it made it less stressfull so I didn’t have to worry about losing my seal. I also made sure that I spent a good 30 minutes not moving once I applied the appliance. I only changed once a week. I would take a shower on Sat am, then sit on the bed naked )making sure hubby was out of the house!!) and go to work!! I used extra wipes to make sure the barrier adhered and with the eakin seals and paste and the 30 minutes of set time I usually got a good seal.
I know everyone has issues with their loop, but I’m pretty sure at least theirs are generally above the surface. When mine contracts its completely below the skin….hence below the wafer no matter what. My output is most of liquid…which doesn’t help either. I have immodium (not an RX) and all that jazz but then it gets so thick that, that causes leaks. Its really a lose/lose.
I would love to change once a week….if I ever get past 2 days…I’m gonna give that a try.
I’m aware that issues and frustrations are not uncommon, but at some point you hit your personal limit of shit taking. I’m there. I always just keep thinking I was supposed to be done in november…like..I shoulda had pouch for 6 months by now…It couldn’t just be an easy 6 months, or an easy recovery just to be nice…the universe is a giant ass hat.
You are right. The universe really is a giant ass hat…but you are the wild hair up it’s butt. You keep things lively, and people love you for it. Don’t forget it yo.
You just called me hair in an ass. Thanks dana.
Have you tried the latex Osto-bond to help with the leaking? My stoma also sank into my stomach after the stupid bridge broke. I had up to 2 leaks a day until I tried the Osto-bond. I would apply a couple of coats and it just made the appliance stick.