What could make your life easier?

[LizHall]

Hi there all, my name is Liz and my sister has had crohn's disease for the past 11 years. She had an ileostomy formed 7 years ago, which lead to her having her large intestine (colon) removed, as it was so badly diseased. When her colon was removed the surgeons left the end of her small intestine (a stoma) outside of her body.

I am currently a design student in London and I am doing a project aimed at helping people with chronic illnesses lead an easier life.

After interviewing her for the project she told me that the thing that affects her the most is not having underwear/ swim wear that covers the scar. There are no designs out there that take this into consideration.

I was wondering if anyone would like to give me their accounts of having crohn's disease or having a stoma? Does this porblme affect anyone else out there? If anyone has anything that they think would make dealing with this any easier on them?

I really would welcome any thoughts or comments that any one may have or want to express.

Thanks everyone.

Liz

 

[forum contributor]

Welcome, Liz!

I'm sorry that I can't help w/the stoma topic, but I did want to welcome you anyway.

I think Kello could help with that!

 

[beth]

Not stoma related, but:

<flippant>A tee shirt that says something along the lines of "Get the £$%^ out of my personal space... I'm immunosuppressed"</flippant>

Welcome, and hope you find some useful info here!

 

[bella_sky]

Love that shirt idea too Beth!! lol

 

[imisspopcorn]

Hi there all, my name is Liz and my sister has had crohn's disease for the past 11 years. She had an ileostomy formed 7 years ago, which lead to her having her large intestine (colon) removed, as it was so badly diseased. When her colon was removed the surgeons left the end of her small intestine (a stoma) outside of her body.

I am currently a design student in London and I am doing a project aimed at helping people with chronic illnesses lead an easier life.

After interviewing her for the project she told me that the thing that affects her the most is not having underwear/ swim wear that covers the scar. There are no designs out there that take this into consideration.

I was wondering if anyone would like to give me their accounts of having crohn's disease or having a stoma? Does this porblme affect anyone else out there? If anyone has anything that they think would make dealing with this any easier on them?

I really would welcome any thoughts or comments that any one may have or want to express.

Thanks everyone.

Liz

Hi Liz,
That's wonderful of you to take on such a project. I don't have a stoma, but I have seen others comment that they need something to keep the bag stable. I guess during intimate situations it can be noisy and distracting. I hope you get some suggestions from others who do have a stoma.

 

[Guestly]

Hi Liz,

No stoma here.... but liking Beth's suggestion...A LOT

Additionally, here is a sensitive one for me.... some of us have accidents (yeh - I have loads, usually in ludicrous places...)

I have searched high and low for an underwear solution that doesn't look like a giant nappy but will still give me confidence to leave the house on a bad day...

So my wish list is....absorbant, with some kind of charcoal layer to absorb whiffs (in the hope that no one will realise you have had a mishap), not WHITE(!), without leg holes with elastic so tight you lose all feeling in your toes....not HUGE (I know we need to be able to capture volume, but some of these things look like you have a pillow stuffed down your pants)...and last but not least....and this is a big ask....SEXY.... ok may be not sexy, but at least stylish? Perhaps a bit of 50's glamour would compensate for needing a slightly larger style...

Seriously... I think there is a huge gap in the market for dreadfully incontinent women still in their prime, and who don't want to look like one of those baby fetishists when they get undressed...

Lishyloo

 

[shazamataz]

You may have to actually use a bum cork Lishy!

 

[Guestly]

I will have you know that bum corks are scientifically proven to be ineffective... build up of pressure turns them into lethal weapons... faster than a speeding bullet with a liquid trajectory!

BTW - CHARMING!

Lishyloo x

 

[shazamataz]

That creates an interesting image! Sorry for being cheeky, couldn't help myself

 

[violetcreams]

Lol Lishy!!!!!

 

[Guest]

hi Liz, & welcome. what a lovely thing to research, helping not only your sister but many others who may themselves in the same predicament.

i do have an ileostomy, and clothing hasn't really been much of an issue because with today's fashions, anything goes. i can wear low slung jeans as long as i have a longish t-shirt on either on its own or under other tops. i have a collection of funky long vest-tops that i use for that purpose.

as far as swimwear and underwear goes, there are actually some manufacturers who make ostomy clothing, such as http://www.whiterosecollection.com/


and our Kello started a fab thread on the whole topic, here..... http://www.crohnsforum.com/showthread.php?t=6105&highlight=stoma+clothing

 

[Guestly]

Hey cheeky is fun - we gotta laugh!

Liz - another idea... some kind of ice pack for bums - that you can slide into your pants discreetly, bu also refreeze... I think they make them for new mums, but not seen anything for the burning ring of fire...

Also - I use heat patches for pain relief - now they claim to be self adhesive, but the often drop off, they look like something else when they hit the floor - lets not go there, but also they can often be seen through clothes... at the moment I wear an extra small maternity band to hold them in place, but could do with something that is better thought out - after all the maternity bands are designed for a different thing - you know?

Lishyloo