Pending Colostomy, need help and advice!

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crohnspatient13
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Date Joined Jul 2008
Total Posts : 128
   Posted 7/30/2008 4:14 PM (GMT -7)   
So as some of you may know from a previous post in the crohn's section, the colostomy is pending... to get or not to get? I really am nervous about all of the ins and outs of the whole thing because I already get the fact that it could be my ticket to "normal" life, but how is it to live with? do you have to dress differently to accommodate it? Does it ever leak/come undone to make for an embarrassing event? And i've read about how it can be awkward intimately, i get that. But also is it hard to sleep with. shower with, etc?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


simmadown
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Date Joined Jul 2008
Total Posts : 26
   Posted 7/30/2008 4:52 PM (GMT -7)   
I got my colostomy in December due to diverticulitis and a perforation. Very long stay in the hospital, acquired c. diff while there, and lots of other fun stuff. I was due to have the reversal in May but decided, because of my surgeon pissing me off, that I would just keep the bag. People are shocked that I wasn't just dying to get rid of it. But, and this is a big but, I'm an older person, I work from home so having a potential problem with having to go to the potty at work to empty doesn't come into play (and the truth is you shouldn't have to go to the bathroom any more often than you do now) and last, I'm single so I may not be the best person to advise you.

Now, having said all that, people with permanent ostomies don't have insurmountable problems. Sleeping isn't a problem. You can sleep on it if you want. Mine happens to be on the side I do not sleep on but even when I lie on that side, it's not a problem.

You might have a leak/blow out. It's inevitable at some point, I suppose but if you are vigilant about emptying before it's half full, you shouldn't have any accidents. If you start to have seepage under your wafer, you will feel itchy and burning on the skin. That's your cue to go change.

Some people have blow outs at night making for a big mess in bed. I'm a light sleeper and get up several times to pee anyway so if my bag was full, I could empty. I have output in the early a.m. so I haven't had to empty in the night.

You're young, you're gonna have love in your life. Someone who recoils at the idea of your ostomy isn't for you. It doesn't interfere with intimacy if you're both adult and look at it for what it is, saving your life. I look at it as a big bandaid. It's opaque, no one can see 'stuff' in it, it's just a flesh colored thing stuck to my left side.

You can shower in your appliance, you can swim in your appliance, you can do everything you normally did with your appliance, for the most part.

You do not have to have different clothing. Some appliances are so low profile, you could wear a skin tight knit dress and no one would know. The only time you can see mine is when it's full of air and it's like a blimp in my britches. But that can be avoided by going to the loo and burping it before it gets to that point.

I don't know if I've helped you or not but an ostomy is not the end of the world and it sounds like it might be the beginning of a normal life for you and I'd say go for it. You have a lot of years to live and you probably don't want to spend them like you are now, right?

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 7/30/2008 6:16 PM (GMT -7)   
Simmadown - Well put! I agree with all that you said.

I may add that everyone is different and a positive attitude toward life will get you over that hump of wondering IF this is the right thing for you or not. I didn't have a choice 24 years ago. My CD was spreading and uncontrollable and this ileostomy was the only alternative. I was not a happy young adult at the time and it took several months to realize that life was pretty good living without pain and potty breaks every 15 minutes!!!

I wouldn't go back to how life was pre-ileo for nothing! I don't like pain and being sick.
Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/30/2008 7:52 PM (GMT -7)   
i wouldnt' go back to life without one either! this is so much easier. this is an odd thing, but we were out with friends the other day and one of them had to go poo the normal way, and so they were gone for a while, and i thought, wow i sure dont' miss that!
you don't have to change your clothes, you dont' have to change the way you sleep, i just snaked some of those pads from the hospital, the waterproof ones they put under you, sewed a sheet on top of them, and sleep on them. That way, if i do have a leak, all i gotta do is get up, take off the pad and change my stuff. Not change the whole bed. I also already had plastic covers on my matress, i have a small child, lol. And that makes me feel better. It doesn't keep you from doing anything, or make it harder to do anything.
I won't lie, there are times when it's a bit annoying, but then i think, you know if not for this, i would be sitting at home still, instead of doing all the stuff i have been doing lately! since i got mine, i have gotten some friends, i go out every friday night, my friends and their kids come over and we do stuff, like swim, and bowl. I actually just came home from their house. Could have never done that with UC.
Could it leak? sure it could. But if you think about it this way, it's in the front, and you will know really quicly if it happens, and most people are not gonna think that it's poo in the front anyway, so just run off to the bathroom really quickly. There are things you can do to help keep leaks at bay, and never change right before leaving the house, lol. I have changed and run out a few times, but for the most part i like to change a few hours before i am going to go somewhere.
For showering and swimming i tape the bag up on itself so that it wont' show or get in the way.

Good luck with your surgery, and keep repeating this, "I wont' be sick, i won't be sick!" Also make you a list of all the things you CAN'T do now, and then make a list of the things you think you won't like about the bag. I think you will be suprised how much bigger the first list is.

peggy113
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Date Joined Aug 2007
Total Posts : 1998
   Posted 7/30/2008 11:17 PM (GMT -7)   

Summer --- I like the "make a list" idea!!!  I can guarantee you that my "Can't do" list far exceeded the "Why I won't like the bag" list!!!!  Though the bag list was a little scary because it was the unknown - a positive attitude and wanting to live a pain free life was the ticket to learning to adjust with the bag.

 


Peggy
      
Diagnosed with CD in 1979, many resections and meds
Perm Ileostomy July 1984 at Cleveland Clinic
Disease free since surgery 
 


simmadown
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Date Joined Jul 2008
Total Posts : 26
   Posted 7/31/2008 9:40 AM (GMT -7)   
I also wanted to add that the worst thing about the whole experience for me after getting home from my long hosp. stay was finding an appliance that worked. On another ostomy board, they suggested that I call all the suppliers and ask for samples. I did that and finally found one that gives me 7 days wear (and more if I wanted to go longer).

when you call those places, they'll ask you what size your stoma is, what shape it is, whether it's an innie or an outie. You want your surgeon to give you a little bit of an outie if possible. I have an innie which means that I need a convex appliance. They're a little more tricky, these innies.

Not everyone's body is the same so no one appliance is right for everyone. It's trial and error and yegawds, it's itchy, burny, hurty & annoying until you find the one for you.

And if you have a say in placement of your stoma (mine was an emergency and I had no say), think hard about what kind of clothes you wear. Mine happens to be about midway from waist to thigh and to the left of my belly button. Even if I wore low rise jeans, it still wouldn't show but some people end up with them too high and it presents a problem.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 1:06 PM (GMT -7)   
thanks for all that advice it really helps but i am still very ignorant on the topic, i dont even understand what you mean by stoma and appliance. My guess is that there is a part that connects the inside of the intestine and brings it out where maybe, the appliance? would connect? and about how big are the bags? and if it can last you 7 days does that mean you arent changing it for 7 days or you reuse it for 7 days? sorry i just dont understand
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 1:13 PM (GMT -7)   
also, i forgot to add it's nice to know that the bags aren't like see through because that's what i assumed. and also so are you able to tape the bag to yourself or something or is it not too big that it flops about during activities like exercise or running?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


simmadown
Regular Member


Date Joined Jul 2008
Total Posts : 26
   Posted 7/31/2008 2:10 PM (GMT -7)   
You will have a hole in the side of your body. The stoma is the opening where your new 'outlet' will be. An appliance (also called a wafer) covers the stoma --it has adhesive in it, like a bandaid,and then a pouch (also called a bag) attaches to the wafer. The object is to get a wafer that sticks to you and doesn't let 'stuff' seep out under it onto your skin.

Here's a good link to see what it's all about and what some of the products look like. this happens to be the type I use, Convatec Moldable Convex.
http://www.convatec.com/convatec/jsp/CVTCACStaticContent.do?lang=en&country=CA&audience=Consumer&channelId=-13292

With the other appliances (wafers/ prosthetics, whatever you want to call them) I got no more than a day's wear before poop would start to seep under the flange. That gets to be expensive if you have limited coverage for your supplies. I change once a week..the whole schmear, bag AND wafer. Some people change the bag more often but keep the same wafer on until they feel there is leakage.

There are different lengths of bags that attach to your wafer. You can just tuck the ends up under yo' draws so it's not flopping around.

simmadown
Regular Member


Date Joined Jul 2008
Total Posts : 26
   Posted 7/31/2008 2:14 PM (GMT -7)   
pee ess: there are clear pouches and opaque pouches. Frankly, in the beginning most people want the clear so they can see what is going on in there. Takes the mystery out of it, so to speak. You can see the consistency which beginners are fascinated by (heh) and see when you've emptied it completely, if you desire. when I say mine lasts me 7 days, I mean the wafer sticks on my body for at least that long. I empty the pouch several times a day. The pouch, if you get a 2 pc. one, has a tupperware type closure and you can burp it if you feel the pouch is filling with 'air'. I like the drainable ones because I can't afford to replace my bag every day.

hope some of this helps.

lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 7/31/2008 3:21 PM (GMT -7)   

Hi-

I would comment that I have changed what I would wear. Being a bit younger, I find that I am conscious of it inflating and making a big bulge. Often when wearing lower rise pants, the bulge pokes out the top and shows. This summer I have taken to wearing dresses and a pair of spanx type things  which distributes the output more evenly and less bulgy. As for the gym, workout wear is usually tight and I find that no one would notice but I'm self conscious. I wear my regular spandex type pants/capris and a tight top but usually wear a light top tied around my waist. Before the surgery,people told me I could wear whatever I wanted but I just wasn't comfortable once I had it.

And i have to disagree, I NEVER wanted to see what was in the pouch and was much happier with the opaque bags!!!! Your bag you would leave on for 4-5 (some people last 7) and whenever you go pee, you just empty it and rinse and dry it.  


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 7/31/2008 3:30 PM (GMT -7)   
Forgot to mention I have an illeostomy, so leakage is more of a problem. A colostomy is less likely to leak.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 3:36 PM (GMT -7)   
okay thanks for that advice, yeah i figure that it wouldnt be as easy for me as people say, i mean i like to wear the same type of clothes girls my age wear, aka low jeans and tight tops and i just cant picture that unless this bag always stayed flat against my skin (obv not) and it makes me kind of sad because all i can picture if i end up getting one is that i'll have to wear baggy sweatshirts everyday
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 7/31/2008 3:39 PM (GMT -7)   
Absolutely not! NO baggy sweatshirts at all!! I like the new tops that are flowy near the bottom, and if you wear those spanx type things it stays flatter. So you should be able to wear tight tops. And as I mentionned, it's usually only me who notices anything at all. Emptying frequently will also help, but if you are having a colostomy, your output might only be once a day...and you would stay flat the rest of the day. Apparently it can regulate and you will have some idea when your output will come.Also, if you get bags with a filter (which I cannot due to the watery output) the gas should be able to escape and you wouldn't have the bloaty bag.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 3:56 PM (GMT -7)   
okay thanks that sounds good, and also this may be dumb because i assume i already know the answer, but bikinis become out of the question, correct?
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 7/31/2008 4:02 PM (GMT -7)   
Sorry, but yeah, bikinis would not be an easy option. Unless you had a nasty high waisted one!! But at least swimming is not out, which I wondered about.

Angela101
Regular Member


Date Joined Mar 2005
Total Posts : 79
   Posted 7/31/2008 4:11 PM (GMT -7)   
Hey!
I am younger as well and had to change the way I dress - but only a little bit.
I bought a lot of tight fitting tank tops to wear as a second layer under all my clothes. This helped keep the pouch flat against my body and gave extra protection in case of leaks - which I have been lucky not to have (yet).
I like to wear the low rise pants and found these tube top type things called 'bella bands'. They are for pregnant women and fit around your middle area - also making the pouch lie flat - and allow me to wear strapless tops.
I tend to wear a lot of baby-doll style dresses that cinch just under my breasts - which work great because they flow out at the waist.
As for swimsuits... I thought Bikinis were out of the question until I went to landsend.com
They have a huge variety of swimsuits that camoflauge my pouch. I found a pair of board shorts, and a skirtini that are high waisted so when I wear a bikini top only an inch of my appliance shows. I cover the part that shows with a large bandaid, so it just looks like I have a booboo.

I thought after my surgery I would never have sex again, but most brands of pouches also sell smaller ones that are disposable. If I know I am going to be 'having fun' I will put one on so that I am less self conscious. It lies fliat and is about the size of my hand so it does not hang or bounce. It only last for an hour or so - but definitely helps me feel sexier.

I hope all this info help!!
Good luck!
Dx/ed October 2003,
April 2004 - Surgery - 2ft of small bowel removed
Feb 2007 - Surgery again and a temporary ileostomy
Present - on Remicade waiting for surgery to reverse the ileostomy - Health Care System in Canada sucks - wait list is 6 12+ months.
 
 
 


lacey55
Regular Member


Date Joined Jun 2008
Total Posts : 29
   Posted 7/31/2008 4:18 PM (GMT -7)   

Someone else had posted that they put a regular tube top during intimacy. Thought that was a good idea, but haven't had a chance to get one yet (or remember!).

I agree with the layering of a tank top, although it is sooo hot and humid it's out of the question right now. I'm a bit freaky about ANY part of the appliance being seen, so bikinis would never happen for me, but I also have a picc line which I am very self conscious about. Too many boo boos!! Love the baby doll dresses too...wear them all the time and my hubby comments that I look so much nicer. You just look more put together in a dress, and they are so easy and not restrictive.


crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 4:28 PM (GMT -7)   
yeah thats a good idea, i already thought about the babydolls! good thing they are in style big time right now haha! one other thing i can breathe easy about is that i already have a boyfriend and we're probably going to get married after college and he's extremely understanding. i would be way more self conscious if i were single and trying to be intimate i think, but then again thats the way it is even if you dont have an ostomy! haha
18 year old female- diagnosed with severe crohn's in December of 2004, only one mild remission since being diagnosed
have been treated with prednisone, 6mp, and remicade. now trying humira


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 7/31/2008 6:29 PM (GMT -7)   
JCPenneys has these undies made by flirtitude, and they are really cute and all, the boy short or hipster kind or really good and they hold the bag in perfectly. I tuck mine up in on itself. I tape the very top of my bag to my stomach, that way it doesnt' pooch out over my pants. I am not really the most stylish dresser, i never have been, but i wear regular low rise jeans, and the same kind of shirts i have always worn. we have a photobucket page, with all of us in our clothes (well obviously, we aren't naked, lol) and there are a few in bathing suits. It's photobucket.com and it's crohnsdisease and the password is 6mp3asa i made a pic where there are two of me side by side and it says, can you tell under it, noone has even tried to guess which pic i have the ostomy in, cause they cant' tell. And the one person who did guess, guessed wrong.

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 7/31/2008 8:44 PM (GMT -7)   
thanks i checked it out and it makes me feel better, everyone looks great. and this is not meant to be creepy at all lol but you're very pretty summerstorm. it's nice to put a face with a username haha
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Now trying Humira every two weeks.


summerstorm
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Date Joined Aug 2006
Total Posts : 6571
   Posted 7/31/2008 10:04 PM (GMT -7)   
oh no, that's not creepy at all, anybody can call me pretty anytime they want, lol. Was there a single pic on there that you could tell any of us had bags? Even in the bathing suit ones?

crohnspatient13
Regular Member


Date Joined Jul 2008
Total Posts : 128
   Posted 8/1/2008 8:14 AM (GMT -7)   
no, i really couldn't tell. it's very encouraging!
diagnosed with Crohns since 2004
Hospitalized often for colon rest and TPN
Have been on 6MP, flagyl, cipro, prednisone, remicade (3 1/2 years).
Now trying Humira every two weeks.


summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 8/1/2008 2:30 PM (GMT -7)   
i really wish that i had been able to see pics of people with them, at least people i knew had them when i first got sick. Also, it may help you to know that there are lots of famous people with them. Tony Snow, who recently died, had one, one of the queens of england had one, fred astaire has one, one of the Bush brothers, napoleon even had one!

vette guy
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Date Joined Nov 2006
Total Posts : 650
   Posted 8/1/2008 2:41 PM (GMT -7)   
peggy113 said...
Simmadown - Well put! I agree with all that you said.

I may add that everyone is different and a positive attitude toward life will get you over that hump of wondering IF this is the right thing for you or not. I didn't have a choice 24 years ago. My CD was spreading and uncontrollable and this ileostomy was the only alternative. I was not a happy young adult at the time and it took several months to realize that life was pretty good living without pain and potty breaks every 15 minutes!!!

I wouldn't go back to how life was pre-ileo for nothing! I don't like pain and being sick.

Perfectly put!!!! I wasn't emotionally ready when I first had my ostomy in '89, but I realized in short order that it was a blessing to have. As I've said in earlier posts...the only limitations after having ostomy surgery are the one's we emotionally place on ourselves! There's nothing I don't do with an ostomy that I was able to do before my surgery(with the exception of sleeping on my stomach), and I've always been an active guy, and very much into sports!
My ostomy is not reversable. However, even if it was, I'd probably leave things be!
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