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blueglass
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Date Joined Dec 2010
Total Posts : 3332
   Posted 3/22/2011 6:12 PM (GMT -6)   
I'm not there yet, but before I was so sick, I used to swim three times a week at a YMCA. I'd go in the morning, shower afterward, and then change in an open locker room. The showers are private, but the locker room isn't at all. I think they might have some private stalls, but I'm not sure, and besides, I like being in the public area just because I talk to some of the people who come at the same time I do.

So, my inclination when I'm better is to just do what I always used to do, but with an ostomy bag.... but then I think that I've never once seen anyone in a locker room with an ostomy bag, and I don't know how it'd be. Are others likely to freak out? If so, do I care, or is it just their problem?

So, just wondering if there are any of you who just go about being in locker rooms as if the ostomy bag were not a big deal, and whether you have any problems with how people react. Or just how you deal in general.

I am female, btw, as I could imagine there being differences between men's and women's locker rooms on this issue.....

I did go swimming a few times when I had ugly boils on my butt from cutaneous Crohn's disease..... then I kind of changed with my butt in a corner, as they were really gross looking, and I worried people would think contagious (but they weren't).

Mostly, I can't wait until I'm well enough to go swimming again! The visiting nurse today said she thinks it'll be at least a month until my butt wound heals.... sigh.

elddiReMsihT
Regular Member


Date Joined Nov 2010
Total Posts : 111
   Posted 3/22/2011 6:23 PM (GMT -6)   
Do you use clear or opaque bags?

Either way you might get some questions if people were nosy, but I don't think people would freak out with the opaque bags. With the clear... I dunno, even if it were empty, you can still see the stoma and that could alarm people at first. Whether or not people freak out, I think it's your body and you should be able to change in a locker room no matter what people think!
Diagnosed with UC in 2007
Flare in 2007 causing anemia requiring blood transfusions, eventually controlled by asacol and 6-MP.
Flared again in 2009 as 6-MP lost effectiveness, went on TPN and received more blood. Started Remicade, which induced remission.
Flared 2010; Remicade no longer effective.
Had 1st surgery of 3 step j-pouch at CC on 1/19/11. 2nd slated for April, and j-pouch in July!

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/22/2011 6:55 PM (GMT -6)   
Opaque bags, definitely..... clear would be a different story.

Equestrian Mom
Veteran Member


Date Joined Mar 2008
Total Posts : 3115
   Posted 3/22/2011 7:16 PM (GMT -6)   
You could always put your underwear on in the shower stall (I tuck my pouch into my underwear) and come out like that...that way the fact that you have an ostomy isn't obvious and a wrapped towel could work well, too. I remember watching surfers change at their cars...they kept a towel around their lower portion until they had shorts on.

You'll find what works best for you! Just try a few different ways.

Getting back to the things we enjoy is the most importantyeah
formally known as OHIO76 ~ honoring my daughter's passion!
Crohn’s dx 1989
some terrible years before my temporary ileo in 2001
Proctocolectomy w/end ileo in 2008
...wish I knew then what I know NOW!

summerstorm
Veteran Member


Date Joined Aug 2006
Total Posts : 6571
   Posted 3/22/2011 7:27 PM (GMT -6)   
i cant imagine walking around naked in front of people regardless! when i used to go to the Y, many years ago, i just changed in the shower stall or a bathroom stall.
UC for 8 years, before finally kicking its butt and having a permanent ileostomy April 17 2007!
-I have gone to find myself, if i get back before i return, keep me here-
No matter what kind of day you are having, take five minutes to sing loudly and dance like a fool!

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/22/2011 9:09 PM (GMT -6)   
I would just change in the open area but do a sort of dance of the seven veils with my towel so that bag is covered so not to freak people out. I don't necessarily mean have the towel wrapped around you, but you could just hold it in front of bag whilst putting underwear on and just pretend to be drying your stomach area very well. It is one thing to talk openly about it but another for people to see it with their own eyes.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

80sChick
Veteran Member


Date Joined Oct 2009
Total Posts : 1054
   Posted 3/23/2011 4:50 AM (GMT -6)   
I work at Disney World as a dancer, and I have to change quite often in front of others (girls in the locker room, and boys and girls in our break room). Some people know about my ostomy and some peole don't. I don't really worry about it. I mean, most of the time I have either a shirt or bottoms on, so the whole thing is never visible. Even if I didn't have an ostomy, that's my rule: you always have either a top or bottoms on, and that majorly cuts down on the awkward.

Bottom line: no one has ever commented or questioned. Most people are so busy changing while they talk to me, they really don't look.
Stephanie, 29 years old

March 2000-Diagnosed Crohn's Colitis
(Tried every drug imaginable, but lived 10 years with daily diarrhea)
March 18, 2010-Total Proctocolectomy and Permanent Ileostomy! :)
(Now med free, 4 subsequent procedures to correct blockages at stoma site)

Stoma named Zoe...She's my best bud!! :)

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/23/2011 2:59 PM (GMT -6)   
Thanks .... I'll have to see how it goes, but good to know that you manage. Underwear on in the shower seems a good compromise.....

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/23/2011 8:46 PM (GMT -6)   
I don't have it (hubby does) but I would not feel comfortable to be naked in front of strangers and have the appliance exposed like that and would use discretion for sure as I would not want to make others uncomfortable and or force it on others.

He is my husband and I assist him and have no problem with it but would not appreciate seeing others in a public setting.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/25/2011 6:30 AM (GMT -6)   
It's interesting how differently people feel about these issues..... I don't have trouble being naked in front of strangers (well, in a locker room; I wouldn't walk down the street that way :-) ), so that's not part of the mix for me. I don't run around flaunting or anything, but a towel around the waist and one around the shoulders when I'm walking from the shower to my locker, and then I take them off to get dressed, and it's just no big deal at all to me.... don't stare at others, but don't avert my eyes either if we're saying hi etc.

I don't think I would have freaked out seeing an ostomy bag, but then a part of me thinks, so what if people freak out the first time .... this is how they get educated, and new things are sometimes uncomfortable.... I mean, think about things like people who have big scars on their faces or facial tics or other things that make people freak out that aren't so easily hidden...... if everyone hides having a bag etc, then no one ever sees it, so they can't get used to it, and don't know about it, and that makes life harder for all of us. Ostomy bags are part of the world, and I'm not sure that the general public has the right to absolute ignorance about them and that we have the obligation to protect this right....

Now I think a clear bag would be a different story, as showing people your actual poop is just gross..... but I really don't think the opaque ostomy bag looks like much of a big deal..... it's just this bag taped to my belly.... for me the issue would more be that I don't necessarily want to be in a public teacher sort of role every time I go to the gym.... but then I'm not sure how much people would actually ask or notice.

I tend to be open and err on the side of talking, showing, etc..... understand that others are different and appreciate your input.

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/25/2011 7:22 AM (GMT -6)   
I've had an Illeostomy since 89 and have had many many times when I didn't do something I wanted to because I worried about what others would think...never EVER let fear stop you...Crohns will do enough of that for you.  I've come to the state of mind that my body is doing it's best despite all that this darned disease has done to it, and if others have an issue with it, well, let them walk a mile in my shoes...
Give yourself time to adjust, heal, and surround yourself with those who really care about you...
good luck and take care
turn  
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/28/2011 6:20 AM (GMT -6)   
Frosty, you have been through a lot, and I'm glad you're not worrying so much about what others think. You deserve the best life you can create.

I do have a lot of wonderful support, and just about everyone in my life knows about the surgery etc (I do a blog, and I get pretty specific). I will make my way. Thanks.

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/29/2011 3:39 PM (GMT -6)   
thanks...unfortunately my time is about up...guts (what little I have left) have been bad for over a year and a half now...pain is constant, it's a battle everyday to go to work and I normally collapse on the couch minutes after getting home.  on those days when I do eat...the pain is epic, when I don't, I can sorta-kinda ignore it, but do find myself holding my side alot.  My docs wanted me to have the little I have left out and when I told them no, they gave me less than a year...like I said, it's been closer to two now or will be in July...anyway, they're 'upset' that I won't let them cut into me again, but I'm not going the next twenty TPN...I've fought wars with this disease...literally... and if it's going to get me, so be it...But at least I'm going out being able to at least eat.  I am glad to see a site with so many of us...and better yet, so many who genuinely care about others...would have been nice to have had during my journey...too many times I laid alone in a hospital...would have been kinda cool to have someone to talk with.
anyway...remember...life is short, so don't waste it worrying about what others are thinking or saying when they have no idea what your going through.
take care...and when you can...eat hearty and let the devil pick up the tab :)
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/29/2011 4:21 PM (GMT -6)   
Frosty what a fantastic attitude after everything you have been through. I admire your spirit. I agree with you, be open and honest about this disease and it's effects, only then will people understand what it is like. So what if someone sees I have a bag strapped to my stomach and it may shock them.

Does that mean that all those armed forces coming back from Iraq/Afganistan who have lost limbs and carry scars should be hidden away or not let people see their artifical limbs in case they get shocked. Maybe that would have been the case 30 years ago but now no one bats an eyelid and the same should be with stomas. The more we hide it away the more people will expect it to be hidden away. Afterall all anyone can see is what looks like a beige hoover bag stuck to your stomach, hardly horror movie stuff. I've seen worse things at a waterpark, like women who stuff themselves into bikinis 10 sizes too small, now that is shocking. :)
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/29/2011 5:17 PM (GMT -6)   
Stripey, I'm with you .... it does look like a taped on vacuum cleaner bag, and really, people should be able to handle it.

Frosty, I hardly know what to say. Can you go on disability or something, or is your work fun enough to be the thing that gets all your energy? My disease has
nowhere been as bad as yours (Crohn's, but no small intestine involvement to date, thankfully), but I was struggling for years to keep up with work, and it has been good for me to have a break and be able to focus on what I can do and want to do, rather than try to keep up all the time.

Is TPN that awful? I don't know..... have not been in your shoes, so will try to avoid saying stupid things, but I like your style, and I hope there's a way for you to hang around that's worth it for you.... I'll be thinking of you.

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/29/2011 5:41 PM (GMT -6)   
My docs "retired" me 7... years ago...and put me on social security...I wasn't good at just hanging around the house, so enrolled in college and was planning on teaching elementary school....while student teaching I met too many kids with various 'disabilities' who were being ignored, or worse...so I switched to Human Services and graduated with my bachelors in psych and HS last year...now I work with teens with various issues..I help them transition from the structure of high school to the real world...seems I have a knack for gaining their trust and confidence (maybe because I don't treat them as anything but people) and so far this year I've helped 4 get accepted to college...two are going to technical school, and my autistic guy and I just secured work for him that will let him work almost full time in a small pottery shop (he loves working the clay)...first time in almost a year of working with him that I've ever seen him interact with others unprompted...so yeah....love the work...and I've got a 19 year old in college and a 17 year old headed there next fall and SSI doesn't even come close to payin my bills....let alone being able to help my kids out.
TPN: From all the research I've done hasn't come very far, and still greatly limits living life...besides...could you imagine never eating? I went six months once way back when the docs wanted to give my guts a rest...sucked beyond words...cant imagine going that route.
Anyway...my docs have been giving me the 'you don't have long' speech since way back...I just figure I have too much to do to leave anytime soon, and I've hurt for as long as I can remember, so why not a little longer??
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

stripey
Veteran Member


Date Joined Feb 2011
Total Posts : 1059
   Posted 3/29/2011 6:58 PM (GMT -6)   
I have come close to being told I would have to have TPN as not much bowel left and if they couldn't get this flare under control that was next option for me so I looked into it a bit. Aside from the physical act of not eating, and I love my food, there is the side effects from the TPN.

Apparently it causes huge changes in the blood sugar levels which can leave you unable to function without problems. Naively I thought, TPN would be no problem, I could wear one of those motor packs at work to dispense it and would be ok. Seems that may not be the case as you have to cope with feeling sick, dizzy, light headed etc etc.

Luckily flare now seems to be under control and back to work beg April and still loving the food.

Frosty, glad you have a job you love, me too and that keeps me fighting to get back, and hope some medical miracle comes along for you. Shame that bowel transplants aren't more commonly done although I know they have done some but not sure of success rates.
Crohn's dx 1989, loop ileo 1992, end ileo 1992. Arthritis developed 1990 Stoma abcess 1995. Azathioprine started 1995. Panprocolorectomy 1999. Stillbirth 2000, antiphospholipid syndrome dx 2000. Flare up 2004, stoma abcess and strictoplasty 2004. Low blood pressure dx with impaired kidney function 2006, fludrocortisone pres. flare up 2010, steroids, Humira, codeine.

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/29/2011 7:14 PM (GMT -6)   
yeah...transplants are a ways off, stem cell looked promising, but two terms with Bush set that way into the future...
can't worry about the 'what ifs' or the 'what may be's' too much of the 'now' needs attention.
Dinner did it's magic trick and has transformed into barbed wire with a crushed glass chaser...headed to bed here...tomorrows another day, and today, well hell, any day you don't die it's a good one.
nite all...been nice chatting with you :)
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/30/2011 6:29 AM (GMT -6)   
Hope you slept well, Frosty. Some thumbtacks for dessert, maybe?

"Be joyful though you have considered all the facts" -- Wendell Berry. Sounds like you're there....

Glad you both love your work, me too. I teach and had one of the best ever starts to the semester, even though I was having this crazy eye complication where I was in a lot of pain and had to wear sunglasses indoors (students thought they looked cool). Then I spiked a fever, ten days in the hospital, administration told me not to come back until after spring break..... a big part of my decision to have surgery, as I'd always managed to teach when flaring, missed a week here or there, but not half the semester. Decided I'd rather keep my job than my colon..... but I had to tell the students I wouldn't be back, can't really start up again in April for only a month, and I didn't want to undermine the sub (I already knew most of these students). But it's been nice for me to have a break..... but no, not ready to retire (I'm about your age, Frosty), so I get that....

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/30/2011 7:20 AM (GMT -6)   
I most always sleep well...40 years in I guess I've just gotten used to ignoring most of the pain, although my ex wife and several subsequent friends have told me I still hurt while asleep as I moan, hold my stomach, and toss and turn alot. The only one I bother now is my daughters chihuahua which growls at me if I disturb her too much.
9:15 here and guts are finally awake and working...so guess it's going to be a good day.
Which grade to you teach blueglass? I had the pleasure of the 2nd grade during my jr apprenticeship and 4th graders during my student teaching...loved the little guys, but they wore me out...if we could tap that energy we could rule the world :)
off to work...short day today...just have one school to visit this afternoon.
take care all and keep smiling
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/30/2011 7:38 AM (GMT -6)   
I teach college -- also don't have the energy to teach elementary school full time, I think that's a much harder job. Most of my students are planning to be elementary teachers, though, so I contribute that way..... trying to help them get over their fears of math and see that there are much better ways to teach it than most of them experienced.

Before I was so sick, I did do some work in an elementary school, and I did enjoy the kids a lot.... but it wasn't full time.

Have a good day.

Another UC wife
Veteran Member


Date Joined Jun 2007
Total Posts : 2111
   Posted 3/30/2011 7:51 PM (GMT -6)   
I posted above my honest thoughts on the question posed.

I did ask hubby what he thought. He is a very uninhibited individual, accepts life challenges readily and is a "It Is What It Is" kind of guy but even at that he said he would definitely be discreet and cover up with a towel in this given situation.
64 yr old male suffered with UC & in May 06 had a severe flare & hospitalized 6 days...various prednisone treatments leading to steroid dependence and osteopenia, 12 asacol, 200 mg Imuran, failed remicade infusions Jan-May 2010 Dependence on pain meds. Made decision 6/10 to have surgery which was on 12/17/10 (total proctocolectomy & ileostomy - unable to have the j-pouch) and no longer in pain.

blueglass
Veteran Member


Date Joined Dec 2010
Total Posts : 3332
   Posted 3/31/2011 6:46 AM (GMT -6)   
Hi UC wife .... I know you did respond honestly, and I respect that.... definitely a legitimate opinion, and there might also be some differences in terms of where we live, age, who we're in a locker room with, etc in terms of what the norms are and what offends people too much to do..... I think we all have a line here, just not necessarily in exactly the same place (i.e. when I was younger I went to outdoor music festivals where people did walk around naked, and I liked the feeling, and it was no big deal, even if your body wasn't perfect, because it was the norm there.... but just because I liked it there, doesn't mean I think it's OK to walk around naked outside on my street on a nice summer day,much as I might like to sometimes..... of course, a lot of folks would be horrified at that thought, any time....)

FrostyinVt
Regular Member


Date Joined Aug 2008
Total Posts : 33
   Posted 3/31/2011 11:02 AM (GMT -6)   
After so many times in the hospital, shy just doesn't work...I've never been overly concerned where nudity or my ostomy is concerned...have belonged to many gyms and showers in some were wide open...I roll my pouch up and secure with a rubber band just to get it out of the way while I wash...no one ever mentioned it, and if they had I would have just told them what it was. like blueglass, I guess I don't see it as a personal concern....others of course have their own opinions.
Crohns since age 6...46 now.
No meds ever worked, 37 surgeries since age 11, intestines have ruptured 3 times. no large, very very little small left. Illeo since 89

claygirl4#90
New Member


Date Joined Feb 2011
Total Posts : 11
   Posted 4/9/2011 8:14 PM (GMT -6)   
I have to agree that I have seen a lot of stuff in the locker room more offensive than my pouch. By the way, they make a nice "little" pouch that doesn't look like a vacuum cleaner bag which works nicely for the gym, swimming, sex etc. Not a big deal for sure and you should go with what is comfortable for you. Enjoy!
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