Keep ostomie or not

I have had a colostomy for about a year now and I really want to reverse mine. I just hate it, it makes me self conscious, I can't wear half my clothes, I get covered in poop all the time. I stink (even my dog wont come near me at times from opening my pouch), its hindered my ability to make friends and my love life is none existant and I'm afraid it will remain so.

My doctor says that my abscess might come back. I'm willing to take that chance though. But if they do come back can I get an ostomy again if I have to? Also after reading posts from others it seems that reversal is Hell. Is it true, is the ostomy the better of two evils?

dreamer06~I am sorry you are having such a difficult time with your colostomy...have you talked to anyone (including your c/r surgeon) about the problems you are having? There are many things you can use to make your situation easier...for example there are deodorizers for the smell.

As far as being covered in poop...it sounds like the appliance you are using may not be the one for your body and stoma. A correctly fitting appliance should not leak. Maybe you could let us know what your stoma looks like, what appliance you are using and what products you use with it. Maybe there is something out of the ordinary that is causing that problem. Have you seen a WOC Nurse recently? sometimes our bodies change and we need to have our appliance re-evaluated.

As far as clothes...what makes it hard to wear half your wardrobe? You should be able to wear what you want...with maybe the exception of super low-rise jeans (but I even think there are a few posters who do!!).

Are all these concerns because of the uncertainty of your disease? It really affects all of us individually and I am really sad to hear what a hard time you are having:( Also, just because one person has a difficult time with a reversal, doesn't mean you will. I had a very uneventful reversal more than 12 years ago and didn't have any issues with recovery. I also had abscesses/fistulas that continued to get worse after the reversal so it wasn't long before I asked my doc for another!

Quality of life if very important and might be helpful for you to put your concerns on paper (or a post) so you can see them. Knowing that if you have a reversal and your problems continue what your options are before hand could help, too.

I ran across this in my Diabetes Forecast magazine.

For a patient wioth a chronic illness hope can actually be an obstacle. Researchers found that people who accepted their illness as permanent had a higher quality of life than those who kept wishing for a cure. The study which didn't focus on diabetes followed participants who had received a colostomy bageither permanently or temporarily and lkater surveyed their mood.People in the groupwho didn't anticipate a future without a colostomy bagreported being in better spirits six months after whille those waiting for better times felt worse. Researchers think accepting the situation as permanent helped the first group adapt to it more quickly. Ralph

Ralph~I think that is VERY TRUE!

darksky "I am nervous about the having to go to the bathroom many times a day and wearing a diaper in certain circumstances but I think with watching when I eat and what I eat and doing my best to stay healthy I could adapt my life to control it."

Are you FORSERIOUS??????????? The reason I GOT Oscar was because at 32 I HAD to wear a diaper for alot of things. Thats bananas!!! Do you really want to go through that??....going to see a sporting event, going to see a movie, not being able to hang out at the beach/pool, standing in line....ANYWHERE, road trips, plane rides, walking in the mall, sitting in traffic for goodness sakes, all of that wearing a diaper or if your not, worrying about a washroom being near? Oh, and here's some advice...it dosen't matter WHAT or WHEN you put something in your mouth or how much you "watch what you eat" If it's going to come out, it will.

Wow, I just can't imagine WANTING to go back to that. I had to worry about those things for 13 years and now, would NEVER EVER EVER EVER EVER EVER (you get the idea) give up my freedom and quality of life that Oscar has given me. Oscar has made me healthy and as such I am doing everything I can to stay that way! Do you think I LIKE getting up at the crack of the Rooster's crow to get my ass to yoga or the gym when it's -30...NO. But I do, because now that I see what life can be like...Im grabbing it.

I hope you make the right decision for you. I know Oscar was the right decision for me.

-Allie

www.oscartheostomy.blogspot.com

When I consider the pain before the colostoy, there is no question that I have acxcepted my bag and am committed to keeping it

 

Ralph

Wow if they come up with a fake colon i will be first to stand in line for it!!!!!! Then maybe i would feel half human again....

Very good thought i say. Also Dreamer06 i fully understand what your trying to say and ur not alone as i too feel the very same way when it comes to the smell,leakage,what clothing to wear ect!!!! I truly feel for you darling.....

 

sincerley,

 

Beverley.. damagedgoods.....

dreamer06, looking at your signature you have had a lot of abcess/fistula operations and so can understand why your doctor say they may cime back if you have your ileo reversed, but then again they may not. Only you can make the decision as like everyone else has said no two people's experiences are the same.

What I would recommend you do is talk to your stoma nurse, is you are having leaking then the bag isn't sticking properly which can be easily cured with the right bag. Happened to me few months after my first surgery, suddenly my skin decided it dodn't like bag I was using and refused to stick to it. Problem solved changed to a different make bag, that was 18 years ago and still using same type bag, no issues. Same with the odour, only time you should get smell is when you empty it. Even then there are plenty of sprays/liquids/tablets you put inside the bag after each time you empty and it gets rid of the smell.

Clothes issue, I wear whatever I want. I do avoid the very low rise jeans as they cut right across the stoma and whilst showing off your belly whilst pregnant seems to be the latest on trend thing at the moment, don't think showing off stoma bags has caught on just yet, maybe next year. All joking aside, I wear skin tight jeans and crop tops and no one knows I have a stoma unless I tell them. I can see it and that is probably what is making you self concious, but ask your family of close friend to come over and try on loads different clothes and ask them to tell you if it notices. You may be surprised.

Lovelife, I was only 20yo when had first ileostomy done. I was single and it did cross my mind, who the hell was going to want me with a vacuum bag strapped to my stomach. However, 3 months after I met a guy and we went out for a few months and I told him on our second date as didn't want to get into too deep if he was going to run scared. He wasn't bothered one bit. Nor were the other 3 boyfriends I had nor my husband who I met at 22yo.

Once you get the leaking and odour issues sorted then the only bar you have to a fulfilling life is your own confidence. Hopefully by sorting out the bag issues this will give you a boost and you can get back out their with your friends and find someone special.

Good luck and hope you can get back to enjoying life again.