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Ileostomy. What to wear?

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Ileostomy. What to wear?

Postby HildaC » Thu Jan 13, 2011 12:30 pm

I know this might sound like a stupid question, but I am new to this RC business and don't know what to expect.. so please bear with me :D

Once you had your surgery and got an ileostomy (temporary or permanent), did you have to make changes to your wardrobe? I mean, can the dreaded 'bag' be concealed under regular, snug-fitting clothes? If not, what do/did you guys wear after your surgery? My clothes aren't skin tight, but I'm not sure how everything will look with the ileostomy pouch underneath.. FWIW, I'm currently staying home with my toddler, so my wardrobe is mostly casual (jeans/yoga pants and a T-shirt). Should I get pants/shirts in a bigger size? Should I get something with an elastic waist and a higher waistline?

I understand that once I'm out of surgery I won't be in the mood to hit the mall for a long time, so I'd like to get ready in advance.

Thank you!
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Re: Ileostomy. What to wear?

Postby BrownBagger » Thu Jan 13, 2011 1:12 pm

I only had mine in the summer, so I just stuck with shorts and loose shirts with the tail out. Flip flops. I looked like a tourist all summer long. Jeans would have been a problem if I had to wear them all the time, as my stoma was right about on the beltline. In the winter, you could get away with slacks and sweaters, I think. Nothing drastic, but you do have to make some concessions to the bag.
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Dx: 3/09, Stage 4 RC
Recurrences: (3/lung)
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Re: Ileostomy. What to wear?

Postby Gaelen » Thu Jan 13, 2011 1:17 pm

HildaC - I have a permanent colostomy, so my wardrobe options did change a bit, both because of stoma placement (left side, about four fingers below and to the left of my navel) and weight gain/loss from surgery, chemo, surgery, chemo, etc.

I had to maintain a business casual wardrobe - but the emphasis on truly casual when I wasn't leading a training class or running a videoconference or meeting with the bigwigs. I used to wear scrubs when I had to move equipment, so wore my scrubs to infusions (easy port access, comfortable pants with pockets.) And I wore jeans or leggings with longer tops, sweaters, and jackets depending on the season. My clothes, even pre-cancer, were never the body-hugging, midriff-baring, hip hugger type, 'cause I just didn't feel comfortable in that stuff even as a size "small." I definitely didn't feel comfortable in that kind of stuff as an XL after a year of continuous steroids. :(

But although I needed new sizes, I was able to stick to (mostly) the same types of clothes and same styles I'd been wearing before surgery. I did go to elastic waistbands, or partial elastic waistbands early on - and then found them so comfortable and the look professional enough that I really didn't seek out hard non-giving waistbands when I got to the point that I could wear them. Cancer has taught me that life is too short to be uncomfortable in my clothes! ;)

I found some pleated front "poet style" longer shirts with adjustable long-to-short sleeves, and bought one in every color that I wear untucked (but sometimes belted) over pants. ;) For spring-summer-fall I love love love the boho elastic waist long skirts and embroidered jumpers and wear them with cotton t-shirts - during those seasons I can wear sandals and don't have to wear pantyhose. Things like basic tees, turtlenecks and shells all still fit me exactly as they did before - with an ileo, you might feel more comfortable sizing up, or you might want the tee or turtlenecks you wear under jackets and jumpers to fit you a little closer to help hold the bag stable against your body.

I definitely prefer separates to dresses, unless the dress is like the boho jumper - simple and easy to get in and out of.

Now, writing from home, I'm also wearing mostly danskin bra tops, yoga pants, hoodies and leggings around the house (with the occasional flannel shirt or sweater layered in on days like today when it's 14 degrees!) But I've got a few dress fleece and leather jackets, kept my business casual khakis, and add tee or turtleneck depending on the season so that I can look presentable for interviews and covering events. ;)

BTW - you don't have to hit the mall. I built my post-ostomy wardrobe with the help of QVC, ebay and other online retailers. I'd experiment with the item sizing directly from QVC (who will always take it back) until I got the sizing right - and then go to eBay (NWT = new with tags) and buy the same item for a quarter of the price. And some things, like Denim & Co. jeans, leggings, leather jackets, fit so well I'll even pay the retail price. But online shopping can be a chemo patient's best friend. I haven't done face-to-face gift shopping for years!

Hope this helps.
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4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
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Re: Ileostomy. What to wear?

Postby fritts44 » Thu Jan 13, 2011 1:19 pm

I have a colostomy, so my stoma is on my left side. I'm new to it also, as I'm only 4 weeks out from surgery.

I did buy this wrap from Ostomy Secrets (http://www.ostomyshop.com/proddetail.php?prod=VixenWrap&cat=9). I bought some of their underwear, too. They're expensive, but I've found that, with the wrap, I can wear my jeans or any other pants I had before the surgery. I also like how the wrap "snugs" my waist post-op -- I find that I don't hold my abs going up & down stairs, for example.

I'm getting ready to purchase more from them so I don't have to do laundry as often. If anyone knows of similar but cheaper items, I would love to know about them!

Lee F
Lee F
RC dx 12/16/10
resection & perm colo 12/17/10
8 rounds chemo, 28 rounds radiation
finished 8/26/2011
clean scope 9/20/2011
clean CT scan 12/26/2011
NED
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Re: Ileostomy. What to wear?

Postby nicola smith » Thu Jan 13, 2011 1:37 pm

My ileostomy is on the right side. The ostomy nurse and I picked out an ideal placement spot for the surgeon to aim for - one that does not interfere with where I like the waistband of my underwear or outerwear to be.

Bottom line is I did not change my wardrobe at all. It's professional as well as casual made up of sweaters/camis/jerseys/T's and trousers/jeans/pencil skirts with or without jackets. I also have a few dresses for both day and evening wear (nights out)

I did wear trousers/jeans unzipped until the surgical swelling went down, but covered this with a maternity belly band (google on Bellaband). Under a jersey or sweater, the belly band just looked like another layer. Belly bands are comfortable because they have lots of 'give'. They also help to hold the ileostomy pouch in place.

So I think your casual wardrobe should be just fine. If you have belly bands left over from your pregnancy, use the larger size post surgery and then work down to the smaller sizes as the swelling subsides...sort of the reverse of pregnancy! Eventually you might not need anything but your underwear to hold things in place.

For the men out there, my ostomy nurse recommends belly bands for you too...and they are much better looking than ostomy belts (and cheaper)!

P.S. For days at home, after chemo, with the infusion pump, I wore a big poncho that hid the d### thing.
Last edited by nicola smith on Thu Jan 13, 2011 1:51 pm, edited 2 times in total.
UC history
11/09: Dx
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
03/10,11,12&13; 06/14: CT NED
04/12: PET/CT NED
03/13: port out
CEA ~3 mnths: 2.9@dx,.9,1.7,1.5,1.1,1.3,.8,.9,.9,1,.9,.8,.8, 1.1,1,1.1,1.3,1.2
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Re: Ileostomy. What to wear?

Postby Surroundedbylove » Thu Jan 13, 2011 1:46 pm

I didn't change my wardrobe but I did find myself gravitating to specific things in my wardrobe. I particularly liked Nike running pants and yoga pants that weren't really low waisted. I found that the gently stretchy snugness made me feel like the pouch wasn't too floppy and that it was more secure. For that reason I also like higher waisted "granny panties." I didn't like to wear jeans because most of mine happened to have a waist band that hit right at the incision site/stoma site. I still don't like to wear those jeans even post-takedown. Other jeans with a slightly higher waistband were just fine.

I didn't like really loose dresses - mainly because some gentle snugness made everything feel secure - but the ostomy wraps mentioned above would probably change my feeling about dresses.

If you've got yoga pants you're in good shape for post-op and can fill in as you go along.
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Rectal Cancer @ 43, '08
Clinical: T3,N2a,MX (IIIB)
6 wks XELOX & radiation
LAR, colonic j-pouch, & temp ileo '09
Surgical: ypT3,ypN0,ypMX (0 of 20 nodes)
FOLFOX; XELOX
Ileo Takedown '09
SIL Dx 2014 - Rectal T3
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Re: Ileostomy. What to wear?

Postby nicola smith » Thu Jan 13, 2011 2:01 pm

Heh - I've just looked at pictures of ostomy wraps and bella bands - they look like the same thing though bella bands cost somewhat less.
UC history
11/09: Dx
02/10: colectomy, temp ileo; pT3N1Mx
10/10: 12 Folfox6
03/11: jpouch
03/10,11,12&13; 06/14: CT NED
04/12: PET/CT NED
03/13: port out
CEA ~3 mnths: 2.9@dx,.9,1.7,1.5,1.1,1.3,.8,.9,.9,1,.9,.8,.8, 1.1,1,1.1,1.3,1.2
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Re: Ileostomy. What to wear?

Postby tammylayne » Thu Jan 13, 2011 2:50 pm

I am 5 weeks post op with a temp ileo. I have lost 22 pounds, but I cannot comfortably fit into my jeans, and they were not skin tight. I find that my tummy area is still very achey and sore. I don't go out much yet, other than to the doctors and a couple of holiday functions. When I do leave the house, I find my elastic waist slacks work the best with a nice loose fitting top. (ie blouse, dressy shirt). When I am at home, I love those casual pj pants and wear a hoodie or tshirt, again fairly loose fitting. Yoga pants would also work.

I find my biggest problem is that my bag tends to get full of gas, so it balloons out. I have to empty it about every 2 hours, however my doc recently put me on immodium 4 times a day to slow down the output, so I am more like every 3 hours now. If I wasn't so gassy, I could probably wear tighter clothes, but I am not that confident - yet.

My first week home I was pretty much just in pjs, so make sure you have some comfy ones. I did buy some larger loose undies, that I liked the first couple of weeks as they were looser on my incision, although now at week 5, not needed - however, I do like them at night as they are looser feeling when I sleep - just personal choice, and possibly TMI....sorry :?

Hope that helps....good luck.

Tammylayne
51 F
'06 Stage 1 CC,
'10 Stage 3 Rectal

"You never know how strong you are until you have to become your own hero."
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Re: Ileostomy. What to wear?

Postby wifeandmom » Thu Jan 13, 2011 9:08 pm

I absolutely echo the recommendation for Ostomysecrets. The company was founded by a young mom who has an ileostomy. All of the employees have ostomies. In addition to their products, there are videos on the website re. how to dress with an ostomy. There are also some videos that I watched on Youtube (they also are on the UCVlog). Here are some of the links:

http://www.youtube.com/watch?v=ZHKA453jx4U
http://www.youtube.com/watch?v=DbPd0lyJUCU
http://www.youtube.com/watch?v=naeRdPsm4K4

I spent alot of time in Hanes sweatpants which I ordered online (I think they were $10 each). I wore lots of tunic tops, also bought online. Chadwick's was a good source (and I did get some from Hanes, also). In the summer, I lived in casual, non-clingy dresses.

Best wishes.
Dx 4/09
Rectal CA T3 N0 M0
Neo-adj. rad/Xelox
Surgery 8/25/09 LAR, temp ileo
Reversal 10/09
Fistula
Surgery 12/21/09 temp ileo
ICU 12/30/09
8 rounds Xelox
Surgery 9/9/10 fix fistula, redo anastomosis
Reversal surgery 12/23/10
Hernia surgery 5/19/11
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Re: Ileostomy. What to wear?

Postby TheBurn » Thu Jan 13, 2011 9:49 pm

nicola smith wrote:For the men out there, my ostomy nurse recommends belly bands for you too...and they are much better looking than ostomy belts (and cheaper)!


I use the BeBands, which are a lighter weight version of Bella Bands. You can get them at Target for $15. (X-Large are only available online).
Living Life Colon-Free
-----------------------------------------
50
RC 7/20/10
Proctocolectomy/ileo 10/22/10; Sx Path - T3N1M0
Folfox - 1/12/11; Xelox - 2/23/11
Xeloda - 3/16-6/21/11
Chemo-rad 6/29-8/8/11
NED 8/15/11
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Re: Ileostomy. What to wear?

Postby RayGirl » Fri Jan 14, 2011 10:48 am

If I could I'd live in yoga pants and longish t-shirts I would. I also like dresses with empire waist and leggings or tights to give me a more secure feeling. Also wear a lot of A-shaped skirts, tunic tops if I want to wear straight shape. I don't wear a lot of my slacks because mine are all hemmed for heals and heals while I have no feeling in my feet isn't going to happen (okay had to fall flat on my face to learn that lesson) Also my jeans all hit right at my stoma, so I've just borrowed my hubby's jeans that he doesn't fit in anymore (thank goodness for a trim hubby with short legs!), those waist are a bit higher.

I actually pulled out some of my early maternity pants for the first month post surgery. My guts decided to take a vacation the morning I was originally be discharged and I looked about six months pregnant by mid-day.

Tammy the ballooning gets better, I had the same problem for about 6-8 weeks and now I only have to empty my bag about 30 minutes after meals.
Stage III Rectal: T3, 3/21 Nodes
dxn:Feb-10
Radiation&Xeloda
7.5 hr surgery
12th FOLFOX Nov-10
Takedown:Jan-11
Clean scan:Nov-13
Port is out!

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Re: Ileostomy. What to wear?

Postby meladori » Fri Jan 14, 2011 12:28 pm

My mom has an ileostomy and wears normal clothes, but prefers pants with elastic waists and tunic tops. You can only see the bag if it is really full (with air or otherwise). Usually it gets emptied when it is 1/3 of the way full. She tucks the bag into her normal undies and you wouldn't be able to know that she even has an ileo unless she told you. Hope that helps!
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Re: Ileostomy. What to wear?

Postby staygreen » Sun Jan 16, 2011 12:07 pm

The literature I was given before surgery said most people can wear the same clothes after an ilieo...I guess I am not most people! My stoma is right where most of my waistbands hit. My friends (bless them) brought me maternity jeans which are ok but were too snug to wear more than a few hours. My stoma could not output easily under the maternity panel. I found pants with elastic and a drawstring works best for me so I can wear them above my stoma. Big sweaters go over the top because the bag is noticeable on me when it fills-i am short and small.
Basically, for comfort nothing tight from the stoma down to the end of the bag.
good Luck!
5/10 rectal cancer age 53
6/10 transanal excision
9/10 6wks rad/xeloda
12/10 LAR + temp ilieo
1/10 starting FOLFOX
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