Using Disabled Toilets with an Invisible Disability - Need Advice

Since having the colostomy operation, I am having to use the disabled toilets when I am out shopping, and I have already been given the disapproving stare because I don't look disabled.

Are disabled toilets for people with disabilities or only those with visible and obvious disabilities?

I got the most disapproving stare from some girl who was running at high speed to use the disabled toilet... gave me the impression she was attempting to jump the queue in the ladies'... but I said sorry because I was there and needed to use it for a bag change, but I don't want to spend my life apologizing for needing to use the disabled toilets.

I hate this aspect of the stoma, and I find this embarrassing.

I can handle most of it, but this is really confronting.

I just can't do a bag change on the toilet in the ladies' room - there isn't enough room in that there squatty cubicle.

Can anyone advise me on what to do in this situation before my head explodes with embarrassment or I give someone a flurry of words and invite them to have dear Tomi the stoma for a couple of days and see how they like it.

I do not want to lose it over something that may be minor or have an easy solution.

Thanks heaps.

The answer would be whoever is most in need of the facilities, methinks, regardless of disability!

I used the disabled toilets even before my ostomy and have never received any black looks for doing so (not that I'd notice, when you gotta go, you gotta go!).    I have always liked the fact that there is so much more room to move and take care of business, so to speak.

It's not like the disabled/handicapped parking spaces where you require a permit. Hey, I'd just waltz on in if I were you, and ignore any ignorant people giving you the greasy eyeball (honestly, how rude can people be, I ask you), there's no need for an explanation to anyone!    

And if you do feel the need to let fly, just let 'em have it, you'll probably never see 'em again!

Take care,
Jo x    

Are disabled toilets for people with disabilities or only those with visible and obvious disabilities?

I know exactly how you feel....my response would be I'm an Ostomate...and let them figure out what that means. Bet they go home and look it up on the computer and then feel terrible that they gave you a dirty look! I wouldn't worry about it...life is too short to sweat the small stuff. As you know, we have more to worry about than who should use a disability toilet. So use it and hold your head high when you leave the stall. Becky

I actually had a guy one day say something under his breath to me about using the disabled toilet in a shopping centre. So I just turned to him and said "Hey mate, I wonder if you could give me a hand if possible." He turned and asked me how he could help and that I should not be using the disabled toilets. I replied with "I just need you to come in with me if you can and help me change this bag, which is full of shit." He left fairly quickly.

Ken

Well done KennyT

I get so fed up with the remarks that are made at times.

Why is it that you have to show some form of invalidity in order to use the disabled toilet? It makes my blood boil.

At some point, I may come out with the used bag and ask them to hold it for a while.

I have even had paramedics advise me that I am not supposed to use the disabled toilet. Gggrrr.

Oooh ~ you've all had the comments and I've never had one, and am just dying to flash my bag!

Disabled toilets are absolutely necessary ~ there is no way you could ever change in one of those small cubicles, that's ridiculous...! I always use one as I like to use the mirror to check for leaks and they are usually just at the right height...

Don't be embarrassed, you've as much right as anyone else to use that loo!
Rach xxxx

I was accused by a security guard at a show in South Aussie, who told me I was ignorant and not to use them again. So in my colorful way, I told him to go and see to his own procreation and not judge people by how they look. I then proceeded to show him the bag in front of about 100 people and said, "Would you like to watch me shit and wash it down the sink?". Bright shade of red for that guy.

In the eternal words of my Grandmother, "Fuck 'em, fuck 'em all!". Use disabled toilets as much as you like, I do!

thank you so much! I feel a lot better now and far more prepared for "the look". I was nervous that I would let fly and end up looking like an idiot.

I will be much more prepared to use the disabled toilets now, knowing that it is okay.

This has been a huge shift for me - talk about a lifestyle change!!! - and most of it I can deal with it's just contact with judgemental others that I find difficult.

I am totally in shock with some of the things you have had said to you!!! I would never dream of presuming to tell anyone anything about their disability whether I could see it or not, so I find those that do that sort of thing totally confronting, and downright rude.

I know it's a little thing, but it was a consideration for me when contemplating going out. What if I needed to fix the bag, burp the bag, or clean up a mess, what attitudes would I meet. I just found the notion of being attacked too much to handle. I knew I would either fall apart or fly apart... either option is not normally me. I'm the calm rational type - normally.

But then the arrival of Tomi the Celebrity Stoma has shaken calm rational me a little and it's the little stuff that freaks me out... like the mere idea of the bag blowing up and leaving me covered in ick is my biggest nightmare... and that's stupid cos I'm washable. But still it terrifies me.

and then my stomal therapist had me try a new pouch/wafer combination this weekend. I have been using a Hollister two piece and doing okay but for the rash under the tape. My ST suggested that I try the Convatec two piece Esteem Synergy with a different tape. this one sticks together with adhesive instead of the two plastic rings... and leaks at night through the filter no less!! That's freaking me out. And the fact that the plastic inner sits directly on my stoma with a sort of vaccum seal had me worried that the stoma couldn't breathe! LOL Is it normal for the plastic inside a closed bag to sit on the stoma? and how the heck do I stop the nighttime leaking... Hollister didn't leak, it just stabbed me with its side rings... that was easier to clean up! I just rolled over LOL. Any ideas?

I am coping with the big stuff - the appearance of the stoma doesn't freak me out, the fact it's there and i have a bag on my stomach - no problem. I don't have body image issues so far, and I've even jettisoned the gloves I was using obsessively to keep the gunk away from my fingers. I am finding the big stuff dead easy to cope with, the fact is if I didn't have Tomi I would be dead, and I just refuse point blank to have Constipation as my cause of death! Eaten by hippo on safari in Africa yes, constipation, no way! But it's the little stuff that is doing my head in. Stuff like toileting protocols, leaking, smells, farts (OMG the sensation of farting! that's so weird!) and the plastic laying on top of the stoma, these are the things I spend hours fretting about.

Probably very minor stuff, and in a year's time I will laugh about my fears today but right now they are very real and in my face.

Any ideas on how to stop those leaks????
and any reassurance that plastic on the stoma is fine and normal would be really appreciated.

Thank you so much

Yeah, I was asked, "Do you have a baby to change?" Coming back from Corowa in NSW border, we both went to go at the same time. Her baby had poop running down her little legs, but with her attitude, "F U C you," I said, "Could you empty this?" Then she was so sorry and asked for forgiveness. I still went first, was there first. Felt bad when I was in the loo, my first run-in didn't feel good at all. I can use any dunny, having been through Crohn's. I will go anywhere and have cheers. Mare, I have a card from my association. Don't know who printed them. Ask your association, Mare.

But it's the little stuff that is doing my head in. Stuff like toileting protocols, leaking, smells, farts (OMG the sensation of farting! that's so weird!) and the plastic laying on top of the stoma, these are the things I spend hours fretting about.

Probably very minor stuff, and in a year's time I will laugh about my fears today but right now they are very real and in my face.

Any ideas on how to stop those leaks????
and any reassurance that plastic on the stoma is fine and normal would be really appreciated.

Thank you so much[/quote]

Hi again ...! I am not too sure what you mean about the plastic being on top of the stoma?? The pouch itself has to really touch the stoma I reckon, otherwise we would have to have a box sort of arrangement to hold it off .... is that what you mean? (Now there's an idea - everyone would know what was under the clothes then and using the disabled loo wouldn't be a problem!)

As for leaking - I have done it anywhere and everywhere .... ALWAYS if I eat out (don't know why that is, but it has put me off somewhat .....?) This morning I had a massive 'pouchsplosion' in bed which took me around an hour to damn well clear up! Bless her, my 15yr old daughter is very good and helps me out no end when she is with me, and this morning asked how I managed to do it when she wasn't there - well it just takes about 2 hours then! I have now found that if I eat any sort of fibre after 12pm, then my bag pops off overnight - I have had it 6 years and this has never been a problem until now ... grrrrrrr! Sorry, I am rambling ......

When you say the Hollister pouches dig into you, I'm not sure how that can happen either? Anyway - have you tried the Adapt Rings or the Eakin Seals? They are great and have made a huge difference to loads of us on here .... (I find the Adapt easier to use as the Eakin one seems to stick to my fingers when I am trying to put it on!) Call all the manufacturers and ask for samples - there are allsorts of deodorants, lubricants, seals and flange extensions out there which may help you .... and they are only too happy to send you samples ...... There is a thread on the forum about deodorants - the one that seems to work the best is only available in the US so far (Na'scent), but try Tic Tacs in the pouch (mint), eucalyptus sweets, as well as the ones from the manufacturers. Another tip is to use a hairdryer to dry your skin before applying the pouch, and again once the pouch is on to warm it to your skin.

Hope some of that is of some use?

Keep smiling, and don't sweat the small stuff!

Rach xxxx

I pull my shirt up and show people like that and invite them in to the disabled toilet and ask them if they want to watch me dump my bag. It's only happened a few times and one time a guy showed me his bag and we both started laughing. Life is what you make it. If you fly, make sure you have your clear bag on at the airport for check-in and the screener. LOL

I totally know what you mean about the 'little things' doing you in. But once you add all the little things ... it's a lot to deal with till everything becomes 2nd nature. Even then, for me, it's still sometimes too much.

About the toilets ... like some others here, pre-ostomy, I often used the disabled toilets. With my raging UC, blood, pads, etc. -- I needed the extra room to pull out wipes, new pads, etc.

Yes, I did get the 'looks'. I would make sure I wasn't imagining the look (sometimes we are hypersensitive and may think we are getting looks) I'd say ... "not all physical disabilities are immediately obvious you know" -- with a big smile. I hope I gave the 'looker' something to think about.

All the best to you.

thanks so much for the reassurance. I am doing much better and having read all your replies I am much more prepared for "the look". When I am more confident I will use all of your words to help me along should I need it, and I am sure that Tomi will enjoy being flashed if necessary. bit of a show off is our Tomi - LOL

I've jettisoned the Convatec appliance after it leaked, ooozed, wrecked my skin and smelled and made me feel dirty and absolutely disgusting. I don't need that in my life!!!! I went back to the Hollister appliance and pouch and wouldn't you know, those side belt tabs didn't dig into my sides so much!

I got some samples this week from Coloplast with the Sensura Click system and I think I am in appliance heaven! This set up seems perfect so far. I cannot believe the difference between this one and the Convatec. I'm much more confident with the Sensura Click and changing it is a breeze. I love that I can reposition the bag if I am laying down and can do that so easily. I have yet to change the wafer so will not make a final decision til I see what it does to my skin but geez what a difference.

I love the midi bags and the fact that they sit nicely on my stomach without hanging down too far. I have yet to try the mini bags they sent me but will do that tonight. Tomi sleeps when I do so he's not active at night so it may be that I can use the mini bags at night. Hope so.

I have had an appointment with a nutritionist to ensure I eat the right stuff, at the right times, and in the right amounts. She has got me on 5 small meals a day. I swear I do nothing but eat now. It's a big jump from the last 10 years at one meal a day and no appetite at all. But it's got to be an improvement. I've even started dreaming of food! OMG

I feel like having the colostomy has even addressed my long standing issues with food. It's no good when you can't even think of eating cos of the bodily consequences of eating. I hated trying to go to the toilet and only bleeding, and getting to actually naturally poop once every 40 days. The endless bleeding was so awful and totally terrifying. Now I haven't bled since the colostomy was done. Yippeeeee

I went to see my surgeon last friday and she has sent me home for a pain free 3 months and she will talk about doing a colonoscopy when I see her in March, and then we debate the value of haemorroidectomies (need about 10 haemorroids removed internally and externally) and the removal of scar tissue and fixing the fissures. I hope she will do all that quickly so that it gives my body the maximum chance of healing before we try a reversal.

Of course all that could change if she finds I have diverticulitis as well. Then we have to discuss the implications of that on reversal and attempting "normal" functioning. Given I have not had normal anal functioning since I was a tiny baby, this is going to be a steep learning curve already. I want it to have the best chance possible of healing and being pain and blood free. I certainly do not want to return to my prior state of existence.

I am loving that I actually get to live my life, I don't want to go back to how it was before.

I am slowly introducing my favourite foods back into my life and having so much fun doing it. I've had to make some adjustments - selecting satay sauces that do not include lumps of peanut has been a challenge, but I managed it. thank god for Kantong Malaysian Satay Sauce! I could not live my life without chicken satay. It just would not be worth getting up in the morning..... lol

I was able to wear trousers this wednesday for the first time since coming home from the operation and it was such a big thrill. I even managed to go shopping on my own the same day so I felt really good. It is such a small achievement and yet it was huge at the same time.

I can only hope life continues to get better and more and more fun. Cos heck knows I need more fun in my life.....

Don't we all

Have a great day - thanks for listening

Great attitude! Sometimes I think the majority of the world needs a good slap upside the head. Who and why someone chooses to use a disabled washroom is really not an issue for anyone but the person using it and/or another disabled person waiting for it. As far as I've always been concerned, if a person is lucky enough to be able to take a crap in a 'regular' toilet ... what's it to them. Actually, I even said that to someone in my younger UC days!

Glad you found a system that seems to work so far.

A midi or mini pouch! I'm envious. With my ileo and rapid and watery fills, they just wouldn't do.

Funny what we envy as life goes on ... used to be ladies with beautiful skin, now I get green over other ostomates' smaller bags .

Take care,
Beatrice

Easy one, Rach. Change the pouch to a smaller hole. See the stoma nurse. No me probs for awhile. Thank dog.