What could make your life easier? - Crohns Disease Forum - Support group and forum for IBD, Ulcerative Colitis and Crohn's Disease

LizHall · 10-27-2009, 02:22 PM

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 · 10-27-2009, 08:58 PM

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 · 10-27-2009, 09:19 PM

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 · 11-06-2009, 02:53 AM

Love that shirt idea too Beth!! lol

imisspopcorn · 11-06-2009, 03:14 AM

Quote:

Originally Posted by 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

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.

Lishyloo · 11-06-2009, 08:19 AM

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 · 11-06-2009, 08:26 AM

You may have to actually use a bum cork Lishy!

Lishyloo · 11-06-2009, 08:32 AM

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 · 11-06-2009, 08:33 AM

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

violetcreams · 11-06-2009, 08:38 AM

Lol Lishy!!!!!

dingbat · 11-06-2009, 08:40 AM

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/showthrea...stoma+clothing

Lishyloo · 11-06-2009, 08:42 AM

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

10-27-2009, 02:22 PM	#1
LizHall New Member Join Date: Oct 2009 Posts: 1	What could make your life easier? 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

10-27-2009, 09:19 PM	#3
beth Senior Member Join Date: Mar 2009 Location: Cambridge, UK Posts: 881	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! __________________ Diagnosed Jan 09 Elemental 028 - 3 weeks of hell Azathioprine/6MP/methotrexate - not tolerated. 3 EUA's fistula + seton. then -seton +fibrin Humira junkie since Dec 09

11-06-2009, 02:53 AM	#4
bella_sky Senior Member Join Date: Aug 2009 Location: Northeast US Posts: 114	Love that shirt idea too Beth!! lol __________________ 25 female, dx with CD in July 2009 finally. Treating with remicade, various other meds, and probiotics, fish oil. Dx with Hemangiopericytoma Tumor Nov 2009, complete resection Dec 2009. Currently being tested for various Rheumy issues. Pain doesnt quit. Attitude is everything, love happens, and Finkle is Einhorn.

11-06-2009, 08:26 AM	#7
shazamataz Senior Member Join Date: Aug 2009 Location: New Zealand, Dunedin Posts: 3,672	You may have to actually use a bum cork Lishy! __________________ Farting is FUN

11-06-2009, 08:33 AM	#9
shazamataz Senior Member Join Date: Aug 2009 Location: New Zealand, Dunedin Posts: 3,672	That creates an interesting image! Sorry for being cheeky, couldn't help myself __________________ Farting is FUN

10-27-2009, 08:58 PM	#2
forum contributor Captain Obvious Join Date: Mar 2009 Posts: 4,687	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!

11-06-2009, 08:19 AM	#6
Lishyloo Senior Member Join Date: Jul 2009 Location: Hertfordshire, UK Posts: 617	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

11-06-2009, 08:32 AM	#8
Lishyloo Senior Member Join Date: Jul 2009 Location: Hertfordshire, UK Posts: 617	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

11-06-2009, 08:38 AM	#10
violetcreams Senior Member Join Date: Jul 2009 Location: Northern UK Posts: 736	Lol Lishy!!!!!

11-06-2009, 08:40 AM	#11
dingbat Forum Administrator Join Date: Oct 2007 Location: Planet Confusion Posts: 4,006	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/showthrea...stoma+clothing

11-06-2009, 08:42 AM	#12
Lishyloo Senior Member Join Date: Jul 2009 Location: Hertfordshire, UK Posts: 617	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