i'm 31 and have lived with an illeostomy since i was 17 because of crohn's disease. i understand completely what you are going through. i have had a few girlfriends who i have shared everything with and was not scared away. but even if they are not scared away i feel that this ostomey has created a psychological block for me. i seem to be the one who can't get around it -not them. if you have questions or just want to chat- write me back. i'm still struggling to accept what crohn's has left me with so i understand the loneliness it can bring about at times.
My name is Ashley. I'm 20 and i've had my ileostomy since I was a week old. I have gone through it all since i've had it my entire life. I was aalwaayys terrified whenever i met someone new that I liked..i seriously thought if i told them about my bag that they would get disgusted and change their minds on being with me. However..I had 4 serious bf's who I decided to confide in and every single one of them were totaly fine with it. All full of questions because they were so interested, and some of them looked it up on the internet to fully know what I was going through. I am now engaged to an amazing guy and though I still have problems with it (hatting it like hell) he says he will love me no matter what and I know he's sincere.
This is really personal but it may help some people feel better about worrying what others may think. We were making love one day and the clamp actually came off and it was messy. I thought i was going to die...I just started bawling, I couldnt even look him in the eyes. He promised he would close his eyes while i got up to go clean up and he did. When i came back i just curled on a couch and cried some more and he quickly cleaned up then came back and hugged me all night because he knew how embarassed i was even though it didnt bother him in the least. HE was actually worried that I would leave HIM. Crazy man. Anyway he offered to clean the sheets while i layed down but i didnt make him do that.
Sooo moral of the story is..I think it bothers us a hell of alot more then it bothers anyone else. I am now in a medical office administration course in college and we've talked many times about ileostomies and such and everyone in the class was so interested and not one bit disgusted..since then i've been a lot more open about myself and less scared to tell people.
My email address is email@example.com , if you or anyone wants to add me to msn i use that too, or just email eachother. Good luck boyfriend searching Jenn I know you'll do just fine!
I think I did too! I feel so lucky.
Tomorrow i'm heading to the hospital to get prepped because wednesday I am having surgery. It is possible that I may get my ileostomy reversed after all this time (I really really hope it can be done) If not, I will be getting a new ileostomy because the one I have now is causing a lot of probelms with leaking and abscesses because it is so retracted. The last surgeon that did a revision sutured the stoma to the stomach muscle but everytime Im about to have a bowel movement it just pulls the stoma right in and causes leakage. Anyway, They're talking about removing my entire large bowel because it doesnt really work anyway and if i still have enough small bowel left (i may not because ive had pieces cut off so many times from many surgeries), if there's enough left to reconnect me and there isnt too much scar tissue in my rectum then they will try to reconect me. I won't know until I wake up from surgery though and this is really scary. I dont want to get my hopes up (which i pretty much already did) and then wake up with a new ileostomy that i really don't want. Either way my life will get better and easier with either surgery but i pray to god that i can get it removed for good.
You're absolutely right and there was a point in my life when i didnt dwell on my bag like this but the way it is right now it literaly controls my life. I cant leave the house for more then an hour without being terrified that its going to leak and i wont be in a place where i can change it. So yes, even if i just get a new ileostomy, my life will be so much better then it is now. It wont be leaking so often and maybe just maybe i will be able to go through an entire hour where i forget that i even have it! It used to be that way for me when i didnt have the problems it's giving me now. It was hard going through elementary school with 'mean kids' though, but now that i'm older and much more open about it it isnt hard like that.
But thanks for helping me remember that there was a point in my life that i could forget it was there. If i do get a new ileostomy i may not get as depressed about it now.
Even if the reconnection doesnt work wednesday, I won't consider it permanent..there are things that they can do now to do a reversal that they didn't have when I was younger, so im sure in another 10 years or so there would still be a posibility that i could get rid of it with new technology and such. The medical world changes drastically within a year even.
Anyway! Thanks again for reminding me it isnt the worst thing in the world and that yes, if i was born with Hirschsprung's disease (that's why i had the ileostomy) any earlier, I probably wouln't have even survived.
This is Ash, sorry I havnt posted anything in so long i've been a busy girl. My reversal surgery went great, I recovered faster then I've ever recovered from a surgery. The only thing i'm going through now that is really difficult is the constant bathroom trips. When I first got home from the hospital i was going over 30 times a day and sleeping half an hour a night if I was lucky. This was expected but the hardest thing I went through in my life because I was in so much pain at my bottom from going so often, it sounds like nothing but it really was horrible I thought i made the biggest mistake of my life getting the reconect.
Anyway, it has now been 4 months and i'm going about 10-15 times..more on the 10 side most days. It's still a lot but compared to the 30+ and the pain i was going through which i'm not anymore it's heaven! I can now wear clothes that I always wanted to wear and sit out in the sun and get hot and sweaty doing activities without the bag melting off . It's great..and some days I only go about 8 times (those are my best days). The doctors say it can be 6 months to a year until things slow right down to normal which i expected and normal may only ever be 5-7 times a day but that sounds great to me!
It's late and my brain is slowing down so i can't really think of anythign else to write but if anyone's curious with questions or what's going on let me know! Shawn is also doing great..went through very stressfull times seing me hooked up to IV's and such in the hospital then going through such hard times but he of course stuck right by me through the entire thing and we're still doing great. We're looking for a new apartment this summer and probably getting two kitties!! we love cats.
Bye for now!