Adjusting to Life with an Ostomy and Seeking Support

Hi all, I am a 39-year-old male from upstate NY and just had an ostomy put on me in October. I wasn't thrilled about it then, and I'm still not too happy about it now. I originally went in for hernia surgery on October 6th and then ended up with an infection, so they did another surgery on October 14th in which my doctor nicked my bowels and gave me this wonderful ostomy, yeah, okay. I feel like I'm stranded in my house, too afraid to go out and do anything because I do not want the bag to break. I am also working on a lawsuit against the doctor. It was only supposed to be for 3 months, then I could have a reversal, but I went for tests and there is a large hole in my fistula, so this Thursday I have to go for a procedure in which they will put super glue in the fistula to hopefully fix the hole and get me back to myself again. If that doesn't work, then surgery to try and fix it; if that doesn't work, then I am stuck with it for life, and I am not too sure how I would be able to cope with that, or at all. Well, I am glad I found this site, so there are at least people that I can chat with who have the same thing as me. I hope you all have a nice night and look forward to hearing from you all.
Todd

Hi Nuker, welcome to the mad house!

It sounds like you've had a really rough time, but hopefully your upcoming procedure will help to sort you out. Here you can ask anything; there will always be someone who will be able to help in some way, if only to give you some moral support or make you laugh. There are lots of us who have been left with our stinky friends through no fault of our own, and there are others who are grateful to have had the option in order to save their lives - we all have some story to tell! Good luck with your fistula repair, Rachel xx

Hello.
There are lots of nice people on this site to answer questions,
I have two stomas: a colostomy and a urostomy. It's not that bad living with them, only trouble I have sometimes is my urostomy leaking at night, so staying over at someone else's house overnight is a bit of a scary thought. So far I haven't, but
the way I look at this situation is at least I am living.

Thank you for your responses. I used to love going out all the time and going to concerts, but now I'm afraid to. It seems like I have to go to the bathroom five times an hour or the bag will burst. It's getting aggravating, but there's nothing I can do about it. It was nice meeting you both, and thank you.

G'day Nuker

Had a bad trot from what I read, but don't let it stop you from being free. The chances of the bag breaking are extremely rare. Occasionally, you may not put the bag on right, but that's no biggie if you plan ahead and have spare bags and wafers, even go to the extreme of having spare clothes in the car with you. I've hidden this stoma for over 3 years now, and I was an interstate truck driver. Sure, I had my mishaps and zeppos, but they were odd occasions. Your stoma is giving you life, albeit differently. Don't let it control you, mate. It's there; try and accept it and start living. I'm sure you can do it.

Stories of Living Life to the Fullest from Ostomy Advocates I Hollister

Hey guys,
Yeah, it's still hard for me to deal with the fact that I have it. It's only been 3 months. I was supposed to have reversal on January 19th, but they found a hole in my fistula, so now I have to get that repaired. It has broken a couple of times already, so that's why I'm nervous. I don't want it to happen in public, you know. And I was going to go for my CDL after surgery, but now I can't because they do exams to get it, so I'm not sure if I want to go through the trouble and get turned down. Thanks for the info, and I'm glad I found this site. I would love to find people near me with this.

Hi Todd

Sorry for your troubles, but it does get easier. This is such a wonderful site. A lot of warm and friendly people. They are always here to answer your questions or any concerns.
It's nice to feel part of a group who truly understands what you are going through.
Take care
Dee

Hey Nuker,

I know shit happens... but I'm getting so angry reading about people who go in for other surgeries (not bowel trouble) and wake up with an ostomy
🔒 Login to see image
. To me, that would be so hard to deal with.

Do you mean you've actually had the pouch/bag break? Or is it leaking? If it's breaking, maybe try another brand. I've had mine for almost 2 months... no breakage or leakage... some zeppos and quickly-filled bags though.

I've found that black coffee really increases the fluid and rapid filling of my pouch - so I only treat myself to it when I know I'll be able to empty frequently. Mashed potatoes, marshmallows, rice are great to eat to help solidify the output. Mine's an ileostomy where the stool is more watery anyways.

Hang in there.

I know how you feel, Nuker. It kind of feels like every turn you make there's trouble. But man, don't let it stop you from doing what you want to do. I just decided on a career change into security, so chances are someone's going to rip my bag off in a club or pub brawl. How funny would that be—a bloke thinking he's got me by the balls, and it turns out to be a bag of shit

🔒 Login to see image

Gus, you are hilarious.  It's enlightening to see so many people enjoying life even though we live it a little different than many.