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Crohn's Disease Forum » Surgery » Stoma Subforum » Possible ileostomy worries


09-10-2009, 10:12 PM   #1
maria27
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Possible ileostomy worries

i was diagnosed with crohns when i was 27 and for the most part have been able to manage with meds. developed a very "complicated" as they put it fistula with my first pregnancy. i am now 45 and am having several flareups with fistula, fever etc, have a seton and just had a mushroom cathater (sp) drain added, lovely. my colorectal surgeon who is fabulous has finally said i might want to consider having an ileostomy to improve my quality of life. i am very active, have 2 kids ,play tennis, golf, and am pretty social as well as vane (most people are).
my biggest worry is can i still be very active? thanks to Kello i realize i can wear normal clothes still. i would love to hear some pros and cons. my husband thinks i will feel much better. my mornings are rough but evenings are usually fine. im just really tired all the time now. and am always worried about having accidents from the drainage. i have to wear a pad plus gauze and sometimes that is not enough. will i feel better with the stoma? any advice appreciated
09-11-2009, 03:05 AM   #2
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hiya Maria and welcome

you've come to the right place - quite a few of us either have an ileostomy now, or have had a temp one in the past. i'm sure we can answer all the questions you might have.. and can i just say that your hubby is welcome to join as well, if he wants to raise any issues from his perspective

it's not an easy decision.. for me, there was no decision, my ileostomy surgery was an emergency situation. but i spent many years counselling people who were just about to undergo stoma surgery, or who'd just had it done, so i know what you're going through right now.

i think maybe the best thing is if you write in here the particular questions and worries you have, and we'll all try & answer them as best we can.

if your stoma surgery is going to remove the active Crohn's, take away the part that's pulling you down physically, then absolutely yes - the ileostomy will improve your quality of life. & there's no need to worry about doing sports like golf etc.. i go swimming, play badminton/tennis, in fact the only physical thing i don't do purely because of my surgery is abdo aerobic exercise.

vanity-wise, i hear ya lol. i was a slim 23 yr old when i had mine done.. and when i came round enough from the surgery to think, i presumed my days of looking nice were over - thought i'd be wearing tent-dresses! but how wrong was i... 3 months later was back in my skinny jeans.. even now that i'm (cough) older and more mature, i'm still in my jeans/combats/t-shirts most days.

looking forward to seeing you around on the forum. if you want to post anything more personal about all this, just send me a PM and i can move this thread to our private Lounge forum
09-11-2009, 03:32 AM   #3
kello82
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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?


Last edited by kello82; 09-11-2009 at 03:42 AM.
09-11-2009, 08:00 AM   #4
maria27
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Join Date: Sep 2009
dingbat and kello thanks so much! i am so glad that i found u guys. of course i am verry apprehensive about the whole thing. for years now i have told my surgeon my fears and he has told me i was not there yet. this last appt he finally brought it up. i have a seton wich you know is lovely lol and have had it for 4 years. had this horrible fistula for over 13 years. now it has created several openings and i am dealing with the whole fever thing every couple of months and double up on my cipro and flagyl. they just put that drain tuesday not very comfortable location. and i had an accident couple weeks ago ton of mucus went through and around pad and 4x4 gauze that i shov up there.luckily my girlfriends spotted it , and of course it was a day that i wore khaki instead of black!!! my friends are great.but now that the openings have spread to further out on my right cheek it is getting a little tricky clothing wise. i think i am pretty healthy otherwise right now extremely fatigued. i don't want to wait to long and have a worse scenario but not thrilled but ready to accept the bag if i need to. im sick of feeling like crap but don't want to feel worse. my husbands brother has a colostomy so it is not new to my husband. he thinks i will feel so much better...but he wont be the one with the bag
09-11-2009, 09:41 AM   #5
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kello82 said:
-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
Kello... get some rehydration drinks down you hun.. you'll have lost a lot of electrolytes as well as fluid. the drinks (electroyte, dioralyte etc) will not only put these back, but the fluid in them will help your bowels get back to normal too.

re deodorizing.. the ostomy supply places can give you a list of products they stock, particularly the ones that go in your bag - be careful tho, if you use it too concentrated, or too much, or shake it up so it touches your stoma, you can get little ulcers on the stoma (harmless, they go) but just wanted to warn you.

re: freshening the air - buy a couple of those body sprays like impulse, they're small enough to go in your handbag.. i keep one in mine, and one in the bathroom. really effective! and people will just think you're freshening up if you're using the loo away from home
09-11-2009, 09:49 AM   #6
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Maria - has your consultant told you exactly whereabouts your Crohn's is? and what he would be removing if he went ahead with the surgery?

if you have it in your colon, and/or rectum, and he removes all this area and leaves you with a permanent ileostomy then you can say goodbye to all the horrid bottom issues you're dealing with right now. like Kello says, we take a while to heal after such surgery, but it isn't long before we actually FEEL better, while still healing, if that makes sense.

i'm hoping i don't come across as if i'm promoting having a stoma... i'm not and i know it's a big issue, particularly if there's a chance it will be permanent. but - i can only speak from experience, and my own is that it saved my life, and improved my life. the emotional side of it is probably a bigger issue than the physical dealing with the stoma on a day to day basis, and i notice you said you're ready to accept it - you're halfway there honey. i've seen people go into acute fear and depression at the prospect before surgery.. then weeks later they're smiling and wishing they'd had it done ages ago.

physically, if you can deal with a baby's crappy nappy, then you can sure deal with a stoma lol
09-11-2009, 09:21 PM   #7
maria27
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never thought of it that way lol. my surgeon said it would be reversable but who knows what the future is. i appreciate any input because i want to feel better. i have my ups and downs. sometimes i feel fine but when i'm not it just slows me down too much. thanks i want to be as informed as i can be so i know what to expect. i see my surgeon in 6 weeks and will discuss it more with him since he just worked on my fistula. my gastreo my try remicade again with me. i tried it when it first came out and felt great, 2nd time not so much so didn't to it again
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