aw hi hon
i so feel where youre coming from. heck, had mine for months now and im STILL have new worries about it myself.
glad that i could help with the clothing worry
well ill try to list out some pros and cons here and address the issues that you have...
ok
Pros--
-no more spending hours each day in the bathroom
-not had a single fever since surgery
-weight gain since surg
-appetite SO much better since surg, still got ways to go, but making progress
-my butt healed up! i have a nice, smooth, clean butt now!! that is one of the most exciting things for me, ive always has pus drainage, cuts, sores, etc. and now its all nice. still two holes from very very old and deep fistulas but thats ok.
-ive found my ileo to be a confidence boost. even with a pooper on your tummy, one day youll realize that you are still just as cool as you were when you didnt have a pooper on your tummy and that automatically makes you cooler that you can be just as cool with a pooper on your tummy. k?
hahahah that was silly to type
Cons--
-major surgical complications (probs you are aware of if youve been around my other posts) following my surgery. but, hopefully youre also aware that this stuff is like rare RARE. really doesnt happen on a reg basis ok? part of it had to do with how dead sick i was when i went under. i waited too long, know that now.
-atm im having skin problems with the tape and stuff and rashy stuff, not such a big deal but annoying. working on finding a different ET nurse cause my other one wasnt very good.
-i still have a lot of mucous coming out my butt, my colon is still cranky in there and makes a lotta stuff. i have to sit on the toilet a bit here and there and do get cramps...but once again it seems like this istn the case for most people. i still have to wear pads cause it just comes out.
-smell, ugh i poo smells SO bad riught now, and ok im not gonna lie you CAN smelll sometimes. a lot of people will tell you the you dont smell and well amybe they dont, thats ok, but i deff do. ill ask whoever is next to me if i do and they say yea a teeny bit. ah! only every now and then, but hmm. im gonna look into deoderant stuff to put in the pouch. and sprays to put in the bathroom after i empty.
-blockages? yesterday was the 2nd time that i threw up and my stoma was filling bag after bag of pure liquid clear poo stuff. but neither time i found what came out, it just randomly got better and i could eat again. so idk, i gotta talm to someone about that too....but its no fun to throw up so much like that. yesterday i was on an airplane when it happened! ughh!! lol now im chuckling though
ok, that probably looks like a long list of cons, but i dont wanna like leave stuff out and keep in mind that a few of these things are things that never happen. all the surgical complications and mucous poos and stuff, thats just my body being itself and stupid, soo so few people have it to that extent.
and i attribute pretty much most of my probelms with my new stoma to taking the surgery when my body really couldnt handle it.
good way to see it is "the healthier you are going in, the healthier youll be coming out". its very true. you know, the surgeons and docs make it seems like not a big deal at all, like its no different that getting a shot or something. but really, its INTENSE on your body. were not supposed to be opened up! i think our bodies have a lot more to handle with in the aftermath than we really know..
as far as the drainage that you have..is it drainage from the fistula or is it leaky poo stuff or both? if its either of thos or both then probably you can stop wearing a pad with your ileo *if* it happens! my *guess* is that the fistual shouldheal up and stop draining and of course the leaky poo stuff would stop. i had to wear pads all the time for poo accidents for years, getting more and more till i was carrying extra pants in my purse at all time!
now im still wearing pads for the mucous that comes out but ther is sometimes where hardly any is passing. its so nice to have a dry butt on those days
edit: oh yeah. i was gonna sum up and say that many of the problems in the cons list for me though, they have solutions. like the smelly-ness and the rash problems. they all have probably pretty easy fixes i just have to find what works for me, which takes a while but hey at least you can fix it! being smelly and having to try every type of pouch deod in the country is SO much better than being in that downward spiral of inflammation IMO. not that my crohns isnt still active...but i mean having poo go thru m colon wzs the worstpart of my disease.
ok uh, i think thats it. if i think of more ill surely come back, and if you have any questions go for it!
and as ding offered to you ill do the same, feel free to pm me for anything as well ok?