Facing a Permanent Colostomy: Seeking Support and Advice

I did have a colostomy for 4 years and I did have a reversal 2 years ago. But I am now going to get my colostomy back for life on Jan. 3rd. I am so scared. I'm not handling having to get the colostomy for life very well. I did not like it the first time I had it; I called it "the thing that I hate." I feel like I am so alone...my family does not understand how I am feeling. I am a single 42-year-old woman, I am so scared that I am going to be alone for life due to having a colostomy. Is there anyone out there that feels the same way and how did they deal with it? Help please!

I can sympathize with you. I had no idea what this thing was attached to my stomach when I woke up from surgery. I had no warning of the surgery, and my life changed right then and there. Doctors lied to me and said my ileo was only going to be for 3 months, which has now been 14 years. I had my rectum removed due to a high colon cancer risk in my family, so I'm a lifer as well. Try to think of the positive side of things. I know you wonder what is so positive about having this thing attached to you 24/7, but your quality of life will improve once your body adjusts to the ostomy. You won't spend as much time in the bathroom doing crosswords and contemplating a new color for the walls. You will save on toilet paper. Once your body has adjusted, you can eat what you can tolerate and add new things slowly that you couldn't eat before. Hopefully, you won't spend many days in bed with pains and discomfort. This by far is not a cure, but try to look at it as an improvement in your life. Seek professional help if you are having a hard time emotionally, and seek advice from people on here. Facebook also has many support groups that have helped me in times of depression. Remember, there is always someone worse off than you. Also, there are things worse than an ostomy, but let's not even think of that. Stay positive, turn your bad thoughts into good ones. When I feel I'm an outcast, I look around and think to myself... Hee Hee, I'm pooping and you're not; you have to go to a washroom to do that. I find humor helps, so learn to laugh at it as well. If you want a pick-me-up, I'll help you. I can always make something bad into something good. Good luck and keep us posted on how you are doing and coping with your new friend. Sharry

Hey - I too am scared that I will be alone for the rest of life because of my ileo and also that I will not be able to do the things that I want. My ileo is permanent (Stefan was born Nov 15 2010) and he saved my life - so I have never really hated him but he did depress me a fair bit. The way that I am dealing with it is the following - try not to think of it all the time, try to forget it's there. Try to just carry on as if I did not have an ileo - so far this method works for me really well. Of course I have not been able to return to work - I am still waiting for my surgical wound to heal. But I do my day to day things in the way that I always have - I am hoping that going back to work will not be any different than what is was. I am absolutely terrified of having a blow out in the outside world but so far that has never happened. All I can say is that if you think of yourself in a negative way then that is going to affect you and how to you live in a negative way. There's nothing you can do about your surgery so try to look at it in a positive way after all the alternative is death. And that's scares me more than my having my ileo. There are much worse things that could have happened to you than having a colostomy - try to keep that thought in the back of your mind when you start to feel scared or depressed. Take care and all the best - Terry

Yes, it is scary. You're right to have these concerns. We all have our own version of these worries and problems, but we just push forward. This is the definition of courage.(As an aside... I also hate my condition, but my life is much better if I pretend to love it - I keep the skin near the site healthy, I avoid infection, and I keep my medical supplies well organized.)

Hi there, I think we all have been through these scary times. It's natural to feel this, and your mind just goes rampant on all the ifs and buts, along with loneliness and being able to cope through life. I too know what you're feeling. It takes courage to come on here and speak your mind about your troubles. When you have a colostomy bag, take each day at a time, regain your strength. It's not easy, but time is a healer. As for being alone, you never know what fate brings. Stay around here and meet people; they are always willing to listen, help, and give advice, and there's a chance you could meet Mr. Right too. I wish you luck with your op in January, and a speedy recovery. Take care, ambies...

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

Hello dgfcr42, Thank you for your post. I don't think there can be many people who would look forward to having a permanent ostomy so you are not alone in those feelings. However, when I do get trapped into a bit of negativity about it, the way I cope with it is to focus on the reasons I had it in the first place. On 'balance' the benefits far outweigh the disadvantages. I then move on and find something else to occupy my mind that doesn't involve worrying about those things I can do nothing about. Sometimes these alternatives are much more fun. I even look on 'just for laughs' to remind me that there are often things to smile about if you open up your mind (and your post-it page) to humour.(PS: Thank you all for posting on just for laughs) Best wishes BillBest wishes

I had an emergency ileo on 9/22 due to UC; my colon and appendix ruptured. They told me at a later date I would need two more surgeries to reverse it. The first one is to take out the rectum (which is still infected with UC) and create a J pouch, and the third one is to hook it back up. I have heard a lot of negative things about J pouches that make me wonder if I should reverse it or not. Anyone with experience on that? Also, on another note, everyone tells me that with an ileo, the output is watery, but mine is thick 98% of the time. I feel like I drink all day long, and I don't eat things that thicken it up; I'm not sure what to do. It makes me worry about a blockage. Any ideas? Thanks.

I've had my colostomy since June 2007. I developed a hernia behind my stoma and tried for a reversal, but it could not be done due to scar tissue. They had to move my stoma to the other side in order to repair the hernia. Now I'm afraid of having another hernia. Too many scars already!

I have a problem with bleeding around the edges of my stoma. It only happens about once a month, but sometimes it seems like a lot of blood. Any ideas what causes this? I've learned a lot about ostomies on this website. You are kind of on your own with an ostomy, or so I've found. I guess other people don't really want to think about it or know about it. Oh well, Rosie.

Rosie, is the skin around your stoma flat or raised and bumpy when healthy? Or could the blood be coming from the bottom of the stoma itself? You could try stoma powder and also make sure that you are cutting the right size hole in your flange - or if it is from the stoma itself, that's natural; the stoma bleeds easily. Have you asked your stoma nurse about it?