The surgery from hell

Hello fellow ostomates, I went in to have my non-functioning j-pouch removed on Monday, September 22nd, only to have my small intestine shut down. I spent a week with an NG tube in my gut sucking all fluids out of my gut, only to have them pump barium down the tube to see if there was a blockage so they could x-ray my intestines. Their trick worked, but my advice to anyone thinking about getting a j-pouch is to not get a j-pouch. A lesson learned, I am out of the hospital and doing well.

I had a J-pouch put in on July 1990. It is my security blanket, I love it. Wednesday I was told my pouch has a great deal of scar tissue and my doc suggests I have it removed and have an iliostomy. I'm devastated. HELP, is it really better to live with a bag on your stomach?

Julz, an ileostomy is great. It will take you a while to get used to it. You have to be diligent in remembering to change it out every 3-4 days. You'll learn life is not much different with a pouch. Just please, keep a positive attitude about it. Life is good and great right now. I still do the same things that I did in the past.

A ileostomy is not that bad to have, I've had mine for 6 years and have learned some of the do's and don'ts with it. I normally change my bag on average every 12 to 16 days depending on what I do and how much I sweat, etc.

I have had my ileostomy for 13 years; I would have died without it. In my opinion, as long as you are not too overweight, you will be fine with it. I was overweight due to the use of steroids for years; this makes it very difficult to get a flange that will not fold over, making it leak. If you are thin, go for it.

My Ostomy Journey: Kimberly | Hollister

Hi everybody. It is literally the surgery from hell. I was better off with a tissue paper colon. Should have done the surgery 15 years ago and not died. I would have waited until it actually perforated so at least I know I had no other option left. I understand people on here saying please keep a positive attitude about it. I just can't. I feel like I'm going downhill. I used to be the guy that everybody wants to chat to and go out with. Now I'm almost talking to myself in my head. What's next, schizophrenia? Bipolar? Anxiety? I am scared to see a psychologist. Once again, I was better off with a damaged inflamed colon. Please, if someone can provide me with any help... Can't get that from no one.

Hi Darious, I have had Crohn's disease for 41 years and really had a hard time for many years. This year I had a temporary colostomy on October 1st and am still getting used to it. It's why I am on the site. I know from my nurse it takes at least six weeks to settle down. Then you need to have the right pouching system. It is hard, but it gets better. It helps to have a very good surgeon. I will be happy to talk to you. I feel like you do sometimes, like I'm in my own head too much. I do take medication for anxiety, and it does help. I started that when I was worried all the time about crapping my pants. When I first got Crohn's, I was 20 years old and went down to 69 pounds, and I wouldn't let them do surgery. I got a new doctor and got better, but I had to get a left colectomy in 1995. I had a fistula and had to get a temporary colostomy to fix this after six unsuccessful surgeries. I swore I would never get a bag, but here I am. One nice thing is I am not smelling like a sewer, and I am not worried about what I eat or crapping myself, so I guess there is an upside. I am sorry you are having such a hard time.

Hi, please try to just go with a good feeling that you can slowly get used to the big change in your life and try your hardest not to change anything in what you've always done. Don't let it get yourself in your own little world. I've been there and have done that! Just keep yourself up and enjoy every day! You're here and stay the way you have always been.