hi dan!
sorry to hear that youre not feeling well. we all know too well how that fear prevents us from leaving home =(
i got my stoma about a year ago, i have an ileostomy. some of my problems were similar to yours, i had bad crohns in my rectum and lower third of my colon. fistulas, abcesses, incontinence, stricture...all that fun stuff.
it was a good 4 years ago that an ostomy was first recommended to me by a dr. just like fruitckae said, it was devastating. i thought it was the worst thing possible and really did everything i could to avoid it thru the years.
finally though i was just too sick to get out of bed and not able to eat, so i went for it.
the surgery went very well, its a pretty simple surgery small incision and such, for me i was in a lot of pain coming out of the OR, but once they got the meds adjusted i was golden.
i gained a good ten pounds in just the 1st month after surgery, so i know it was definitly the right choice for me. due to some pretty rare complications, im still in limbo as far as health, but minus those things, i think i would be relatively healthy at this point.
the immediate relief was the cessation of the cramping of taking a poo. that was the most painful symptom for me, and i LOVE that all i have to do now is just open a little clip
also as i said i was super incontinent, esp in the last month or so before the surg. i was really crapping myself at least 3 times a day, and it was a nightmare to make the trip to nyc to see the doc. the fear of the waves of cramps coming over me was paralyzing cause i knew i couldnt stop it onbce it started.
i do still "poo" from my butt in a way, my colon is still inside me, i did not opt for the total colectomy yet. it seems likely, but im trying to hold on to it. but, since its still there it still produces the mucous that is normal to aid in digestion. also more mucous gets produced when youre infmaed too, so that has to come out and there is sometimes a lot of it. so at times i still get those horrible cramps and have 5 seconds to get to the toilet before the mucous floods out. but, it is much better than having the sh*ts all the time
im sure others will comment, not everyone has this mucous though, some people dont have that feeling to "go" as i do.
as far as managing the stoma it becomes SO easy after a while. in the beginning it is rough as through trial and error you have to figure out which products work best for your stoma shape, skin type, belly shape...all these things make each persons product need different. figuring out the best way to shower and going swimming for the first time, these are just the little humps that you get over and learn from. many people have no problem getting their appys wet, but for me it tends to make things loose, so i dont count on being able to get in water and not have to change it. part of that may have to do with the problems i am having on my skin though too, but what i have is not really common so i dont want to worry you!
ive discovered that the ostomy is really unnoticeable. i still wear my slim tees and low rise jeans and it hardly shows. if i am going to be out for a longer period of time, i opt for a looser shirt over top of a tight tank top, cause as the pouch gets full it obviously becomes more visible. but empty it and its flat as a pancake again
i made an ostomy clothing thread around here somewhere.... shows what it looks like under actual clothes. believe it or not i could not find ONE photo of and appy UNDER clothing before my surgery! i wanted to see what the rest of the world would see daily you know? thats aroung here somewhere....
the question of smell is usually a concern, but i find it not too difficult to manage. my poo smells really bad right now idk why, it seems to fluctuate, but theres a ton of deoderant products out there to help and even some household tricks that people have had success with. there is even an internal deoderant called Devrom that you take as a pill and supposedly it neutralizes your poo? im thinking about looking into that.
ok i guess thats it for now, anything else ask away, good luck!
