Hi, belt info please? New ileo. THANKYOU.

Hi, I'm not a big girl.

Since 1 month in hospital and out Dec 23rd, I've put back on 20 pounds. I'm at my reg weight again. 115 lbs @ 5'6".

I have a temp loop ileo, but having problems due to bag filling a lot. I need a belt. I'm in Canada, the day nurse came by and suggested:>

a)reg small elastic belt to go thru hollister clasps to help with weight as it pulls

Question #1 **Haven't decided on Hollister bag as a regular yet, just what I was given.
Bag preferences?

AND

b) stealth belt for clothes and work outs?

Question#2 **How do you empty when sideways? I empty in toilet over paper towel so no splash back.

Question #3 **Belt recommendations? (Is stealth best as good as I've read? Plus the small elastic strand belt that can hold device in place seems rather, frail, thoughts?)

I am a small girl. I..............will copy and paste from my other post explaining my output. I'm having a hard time camouflaging my bag..................:(

Question #4 What to do about bulky bags? Thoughts please? I can't wear any of my tops or stylish clothes. :(

My copy and paste partial from other post. so you see what my dilema is:>

1)Even with paste my volume output is a lot. Not over a liter but enough to seem to always be changing as bag fills up quickly. I get it empty, but it starts to fill. My bag is never flat so what do I do with my hipster clothes? If I don't eat of course my bag is flat. But I am hungry and eat. So bag is always filling. :( At least 8 x's a day so far I empty.

-Day nurse who is impressed I can change things on my own, says it's hard to say, if this output and bag filling will be my new normal or decrease.

(*I've learned what turns it to water and can in fact control back to paste with healthy slow cooked protein and veg foods at only 2 weeks out of surgery. :) Slow cooked though. 8 hours so it's cooked.

But regardless of paste, it is still a bulky bag unless I dont' eat. I am not going to starve anymore so I eat.)

THANKYOU so much for coming by and helping me. I really appreciate it! xoxo :)

Post Edited (Vancouver-Girl) : 1/1/2016 6:05:09 PM (GMT-7)

Hey VanGirl, though you probably don't have a hernia, Nu-Hope can provide you with a perfect fitting belt once you decide on the appliance you'll wear. Call them at 1-800-899-5017 and they'll help you. Follow WGuK's advice first.
Keep us posted.
Michael A

WhitestGuyuKnow_ said...
Hi, I just came about this site and ended up making this to help you out. I just happened to be in another thread elsewhere about this and had responses to your belts questions already up.

Now, this is the elastic belt I used when I had my ileostomy. http://www.convatec.com/products/ostomy/ostomy-appliance-belt/-adjustable/p-a2b693e1-614a-4bad-83ca-4f9e7308f868/1_0026/ It's really great, and definitely gives you a sense of security. I completely get where you're coming from with the heavy bulky bags, and without the belt it's as if it'll peel right off. You've got to be sure that the bag you decide on has tabs on the sides as you snap the ends of the belt onto them. You can adjust it to be as tight as you like.


And about the stealth. I promise you, this site will make a world of a difference. https://www.ostomysecrets.com/ostomysecrets/women/c-26/c-310 I can't give opinions on the women's section, but, I'd swear by the men's underwear. I ordered from her several years back now when she was starting out, but now she's got a much wider selection, especially for women. They're extremely comfortable and very supportive. At times when I was irritated from the elastic belt, since I wore it pretty tight at the same weight then just 2" taller than you, and I could go without the belt completely and just be fine with the underwear. She's got a pocket on the inside of them that cradles/supports the bag. You can obviously manipulate it how you want, and if you want more support just bring it up a little higher. She's got belts available as well, even one for swimming. Trust me, they're seriously great.

Now.. I'm not exactly sure what you mean by "sideways" but I assume you mean you put on your bag horizontally? If that's the case then I highly suggest you get a 2 piece bag if you don't use them already. You have the bag and the wafer seperate and they snap into each other. You can either snap them together before you put them on, or make sure the wafer is connected well first then snap on the bag. And with this, if you like your bag horizontal then you can grab just the tabs that connect to the elastic belt on the side of the bag and without seperating it from the wafer, twist it so that it points downwards to dump easier, then twist it back.

Also, you may already be using them, but there's bags with charcoal filters on them to help filter and release any inflating going on. For me, a lot of the times it was it getting inflated that was a big problem. And at least in that scenario you get rid of it without a problem. But you'll have to comprimise and keep the bag at an angle cause otherwise it'll get really wet and won't work well. It's not exactly free flowing, so I always found it okay to gently/slowly press so it forces the filter to work and you're okay.


about bulkyness wise, if I had somewhere to be, I'd spread out what I'd eat. Like not eating so much within an hour and a half, or 2 hours. That way I could consistently dump it before it get's ridiculous. And really, that felt natural. It wasn't something I had to consciously force myself to do. Just eat some less than you normally do and then eat more 2 hours later. The bag will stay thin and you'll have plenty of time to make sure it stays that way before the next round of food starts making its way around.

Outside of that though I'm sorry, but I'm not really sure what to tell you. I get you wear tighter clothes than I do, but I guess you'll just have to work out compromises. If you're capable of keeping a decent time block inbetween when you're eating for 4 days or so you'll be completely used to it and it won't feel as if you're starving yourself. Maybe you can try out other foods that feel more filling? I know some people don't deal well with oats and grains, but for me I was perfectly fine as long as I didn't pig out, and I'd eat Cliff bars. They're extremely healthy and filling and there's no way you'll get a bulky bag from them. But I guess you'll have to go with trial and error though and find what works best for you.

But anyways, the site I sent is really quality stuff, extremely comfortable. Hopefully it's what you were looking for. The woman who makes it started making them herself because she was having the same issue and you and could only come up with uncomfortable or ugly options and just decided to start making her own.

Hi WhitestGuyUKnow,

Well, I went to ostomy secrets. Ready to order with their sale. I am in Canada. I have a US address too but I bill in Canada so they can't take my order. My billing address has to be US too. YOU are SO helpful though. I finally after so much research found a Canadian site and ordered panties, and a waist band. I'll try those 2 to see how they fit. Can't wait to have a place to put my pouch. My word. And have support on the bag good grief right?

From here I ordered today. The owner was pretty amazing. Very explanatory.

https://www.ostomycares.com/ostomy-care-catalog.html

In the meantime, my ostomy supply store is sending me 5 reg plain jane belts to see if they help until my underwear garments come in. Yes, similar to your band from convatec so I have the tabs you speak of so that should do to start.

What I meant by sideways was only in reference to the Stealthbelt. They're made so you wear your bag, horizontally. I have a 2 piece system and I wear it vertically like most, and have tons of samples coming in with 1 that clicks to turn horizontal or vertical. SO Stealthbelt apparantly is good for harder exercise and when worn, supposedly it is still easy to empty but fits a bit differently as it is horizontal not vertical bag fit. I'm going to order that after 4 weeks to compare with the others I just ordered. I'll report back. And again, thankyou so much for your help and kindness.

If the click bags work I could still "turn" it vertically to empty and "turn" it horizontally to wear it.

ALL OF THIS UNDERWEAR THOUGH, IS REALLY DEPENDING HOW MUCH I CHANGE WHICH IS OFTEN. I MEAN, IT FILLS FAST YOU KNOW? DRAG THAT WAY. It's great when the bag is flat but filling, you can see it get bigger, proper underwear or not, it's not great as it grows. I'm realizing ileo's are tricky and take some getting used to and trials and errors.

http://stealthbelt.com

I just tried a bag for the first time with charcoal vents but.......it still fills up with air. I will try the other companies vented bags next change. Thanks for the tip on configuration on that as well.

Yip, I definitely can't eat the way I'd like. I can't snack if I want to control output. You're right there. SO I diligently eat at 8:00 am, noon, and between 5-6 pm for dinner. I hope in a few weeks my output slows down. We'll see.......................................in the meantime very scheduled food times.

That's it.I really appreciate your suggestions and coming by. Kind of you, thankyou. xo

Post Edited (Vancouver-Girl) : 1/8/2016 9:00:46 PM (GMT-7)

Virdent said...
Hey VanGirl, loops are pain to deal with, though I can tell you aslong as you wear something a little baggy it's barely noticeable, I worked a year with my end/loop ileo and no one even knew, and I never used a stealth kind of device of any kind, oh also I was skinny as hell coming out of surgery, so I think you may be worrying a little more than you have to. :P just remember to empty the bag before you leave! Oh btw, who did your surgery, since I had mine in Vancouver @ ST Pauls so I'm curious.

Hi Virdent, so nice of you to come by as well. I'm sad about the clothes part I'll be honest with you. I'm a workout girl and always wore form fitting tops, lowriders as I trained and loved body sculpting. Which meant bikinni's and beaches were really my thing. That part is hard for me. I know for some it sounds vain, but it was a way of life for me for a long time. I can work out as I get healthier but it's looking like form fitting clothes and string bikinni's are a thing of the past. It's......................my sweaters, t-shirts, I mean, I can't wear my tops. :( I have to wear baggier things to cover the bag even if I wear my low riders. Unless it's first thing in the day, before I start eating, and before it becomes active and filling.

I was skinny too coming in and out of surgery holy smokes. You too huh? Emaciated. I've put on some weight where I look normal again, just from having surgery that let's me eat. Still svelte but not emaciated. We sure can feel and look bad from this stuff the way it takes us down can't we?

I really hope you are feeling better as well. I was at St. Paul's too. Dr. Ahmer Karimuddin. He's amazing. So intelligent, respectful and educated with gastro. Great team as well under him.

Thankyou again, for coming by and your kind words. xo

SuperBlanks said...
Hi VancouverGirl - I've skimmed the posts and can't offer much advice about a belt because I don't use one, but I wanted to tell you what I do so my bag isn't visible.
I'm a similar size to you (5'5" and 121 lbs). To keep my bag flat against me, I wear high waisted underwear - sometimes very fitted ones, but for everyday wear they're just normal highwaisted pants. Trouser-wise, I found jeggings to be great - I'm not sure if they're as popular as they are here (here you can get them in nearly any clothes shop), but they have some really good ones that look 100% like jeans, but just don't have the button & zip closure, they're just an elastic band. I find these to be much more comfortable, because of the elastic I don't have to worry about the waistband cutting into my stoma, and if my bag fills up the elastic keeps it flat against my stomach so it isn't noticeable. Then I wear any top I want, I wear very fitted tops sometimes and no one ever notices. Even people that know I have an ostomy comment at how they can't see a thing.

I see that you're only eating 3 times a day - if your having issues with gas, that could be the reason why. It's better to eat little & often (especially so soon post-op). I still find if I leave a long time before eating, when I do eat then, my stoma is very noisy!! And by eating little & often, you have a more steady stream coming out - if I eat a big dinner say, then it ALL comes out 4-5 hours later & my bag fills up quickly (depending on what I eat of course). Might be something else to consider!

Hi SuperBlanks!

Thankyou for coming by again. Interesting what you said about clothes and food so I'll explain. And yes, we are close in size as well.

I have HUE - brand name stretch leggings. In brown, taupe, black etc. They are high waisted. Mainly polyester then spandex and lycra.

These are high waisted, faux pockets and faux zipper, and I wore tops over them. I guess they are like your jeggings.

I am short waisted and suspect that is why I can still see my bag when things start to fill.

Are you long waisted?

I definitely can't wear tops form fitting. It's too obvious except in morning. And, it's not gas but bm. My top even form fitting, covers pant top, some of the form fitting tops go down right to pant crotch but if bag starts filling, it swells out at pouch in of right side of abdomen, not gas.
Noticeable.

However, maybe with my undergarments that are highwaisted under the stretch pant, it will hide it more? Distribute things more evenly in ostomy bag from the "girdle hold stance?" I hope so.

I have short waisted leggings that are in between pant and jeggings. Great stretch material of cotton, and some spandex. I love them. 6 different colors.They are lowriders, zippers, pockets and they are really cool. My bag sticks out at waist over top of them of course. I hope again, with new undergarments coming in that are high waisted, the new panties will girdle like "HOLD" in the bag to form closer and evenly to my body, as undergarment waist goes above the low pant waist. Undergarment waist covers my whole bag and is made with pouch to hold bag and material is stretch support.

My reg lowrider jeans, same dilema if I wear form fitting tops. I have to buy looser tops at waist and longer.

I think or rather hope, my new ostomy underwear make a difference as you can see, I have 1 similar style of pant like you, but I don't have the positive results you have. :(
(The luck of the Irish?)

I'll have to wear looser tops at waist area.

Now, food. Well. I really don't have a lot of gas. I think my transit is just faster than some. Drag.

In response to small meals, say 6 small a day instead of 3 that you mentioned:>

I had a total colectomy 9 mos ago so my small intestine has adapted like a large colon in the sense, it has no problem with 3 meals a day. And having less meals thankfully does not give me gas.

I find if I have more small meals, I'm a running bm faucet over the top.

Yesterday I had 3 meals, and I did great until after dinner.

I ate breakfast at 10:00 am emptied at 1:00 pm. Ate lunch at 1:30 pm, emptied at 4:30.

Still couldn't wear form fitting tops because even a little when it starts filling, it shows.

BUT, after dinner when I ate at 5:00, after that is when I go go go all night and morning.

Emptied bag at 5:15pm, at 7:30 pm, 10:00 pm, 12:00 am, 3:00 am, 5:30 am. Some bm's made the bag 1/3 full, some a half full or fuller. Keep in mind, I was sleeping so woke up to whatever amount I woke up to.

It's all paste which is good, not water.

I read you said if you have a big dinner it ALL comes out 4 or 5 hours later.

This is why I'm confused. Mine won't ALL come out at once. It comes out in reg size amounts,but a lot of increments and over time as you see above.

I'm starting to wonder, if this is just my cycle.

I had 2 bowel surgeries recently in hospital a month. Nov 27th to untwist small bowel and remove adhesions, and Dec 15 loop ileo finally as the Nov 27th still didn't correct the rectal intussesception and anismus I have. So I still could hardly get things out even with muscles working pretty well.

My surgeon suspected this twist and adhesions was started from 9 mos ago from first total colectomy surgery Feb 2015..

I am wondering if.............................. because of adhesions, though he got rid of them we don't know if more did or will not form again, perhaps my tube is narrower therefore won't release it all like yours, at once. Drag drag drag. After my total colectomy, I went in increments in evening as well, and couldn't eat but liquid soup plus a few crackers.

I didn't know I had a bowel twist and adhesions and there was pain and discomfort which is why I couldn't go, why I couldn't eat right and why I went to ER finally Nov 23rd / 2015 to my surgeon's hospital. I.....was hoping, the late night increment part would stop after loop ileo surgery. To have more coming out, so empty less. BUT lot's comes out, and I empty a lot. 8 times yesterday in total, 6 of them after dinner. It's like ALL my meals decide to really come out in the evening but over time.

Wondering if I have.....................fast transit. :( Oh well.

Maybe it will slow down in a month or a few months? The further I get out, away from the ileo surgery?

You are great, with the suggestions, comparisons all of it. It helps me immensley to see where others are at, in order to figure out my specific terrain in all of this.

Thankyou so very much SuperBlanks. xoxo

Post Edited (Vancouver-Girl) : 1/10/2016 11:09:21 AM (GMT-7)

Hi SuperBlanks,

Thanks for the encouragment and kind words. And breaking down the variables.

I think perhaps it's the bag size and other variables? I have this one in the link, though I'm trying samples of many as they come in. There is no way I could wear a midi with my out put right now................... :(

http://www.exmed.net/p-3009-hollister-new-image-colostomyileostomy-flexwear-kit.aspx

My lowriders are low, in jeans and stretch pants. Other than the ones I have like yours that are high waisted and I can wear a top over. BUT I still don't have even
distribution.

I get how you wear your bag. Mine has a tail I have to fold up, plus it's larger. :(

That may be why too.

My stoma, I just looked at it. The stoma is right of course but a few inches below
belly button to the side. The top of my bag, is aligned with my belly button. So it's lower, but not quite as low as yours.

I was told I couldn't go lower for reasons of bowel configuration I guess specific to my personal anatomy. As well, the area I thought would be easier to conceal was too low because when the nurse was marking me, she showed me how far down the bag would rest on my leg if my stoma was lower. And last, I brought my stretch and jean lowriders with me and tried them on for the markings with the nurse, and if it was a few inches lower than where I described it above, the stoma would be right at the waist of most of my pants. Too low, it would aggravate it. SO, I guess somewhat of different terrain.

(Thank goodness this site said to bring in some of your own clothes!)

I really couldn't wear a smaller bag. No at all realistic. :(

I still wonder why the loop has more output than the end ileo. Seems you
have less output?

1) Can I ask you how many times you empty a day?

2) How big is a midi bag?
- length and width?

3) How full does it get?

I hope you don't mind these questions.......

But like you said, maybe the underwear will make a difference. For distribution, support, and they'll go all the way over my bag in the pouch and easier to smooth things over? I still think I may have to change my tops though. Oh well.

Thanks as well re: don't think it will always be like this, I just had my surgery. I appreciate that. I've read today..........and some people had less output over time with loop, some didn't. We'll see where I land.

I....................yes, you're sure right about the bowel hates to be messed with.

I just read about people having a heavier lunch. You just said that too. I'm trying it tommorrow. Too late today. THANKYOU great idea.

We are going to "try" to reverse it in 6-12 mos though, it's really not a sure thing. So it may not work. I............with all the trouble I had before this, I am not banking on it working. Not being negative, I just know what my problema areas are and it's extreme.

It is kind of a crap shoot.

Hmmmmm, thanks you. I really appreciate your being so specific. Your details put the clothes in a more realistic light for me. Thanks so much you. xoxo

* This forum is incredibly helpful. You are all very supportive, and have great information.

Post Edited (Vancouver-Girl) : 1/11/2016 5:10:34 PM (GMT-7)

firestopper said...
First time posting on here. New ostomy guy. I use the hollister bag and have two of the elastic belts. They. . Like the bags... aren't pretty but they work. I had heavy flow following surgery but it has eased off. I recently came back from a trip to the ocean and wore the belt while playing in the waves. It certainly provides a feeling of security. The stealth bag does relatively the same thing while covering things. If you aren't worried about the looks. The hollister belt works great.

Hi firestopper,

Thankyou so much for coming by and weighing in. :)

I just got some hollister belts sent to me with my first order until my new ostomy undergarments come in.

I started wearing it yesterday. They do offer some support but not quite enough for me unfortunately. They don't allow the bag to pull as much which is great! But, I want my pouch off my skin, plus I need the whole thing covered to see if it smooths out under clothes more.

Question:

1)How long did it take for your flow to slow down?

-when was your surgery?

2) How slow is slow for you?

3) Do you have a colostomy or ileostomy?

Oh my gosh, you were at the ocean playing in the waves. How soothing.

Thankyou again. I hope you are doing okay, adjusting. And I hope all of my questions are okay for you as well. xox

Post Edited (Vancouver-Girl) : 1/11/2016 10:36:18 PM (GMT-7)

To answer your questions (and no, I don't mind at all - ask me anything!):
- the amount I empty a day depends on what I eat. Like if I eat a lot of fruit or veg, I seem to have more output. I'd say I empty 5-6 times a day (always once at night too). Sometimes though if I'm just sitting at home I get lazy and wouldn't empty, whereas if I were out somewhere I would as a "just-in-case".
- I use the Dansac Novalife midi bags. They're about 7 inches long (when closed) and 4/5 wide.
- As I said, when I'm home & not doing anything I get lazy & let the bag get very full. When I'm out or working, I would empty when it might only be half full. But I don't think I ever go to the toilet purely to empty my bag - I always go because I have to pee, and then decide to empty or not when I'm in there.

I am not having my ileostomy reversed (I'm actually thinking of making it 100% permanent by getting my rectum completely removed & sewn up, but that's another story!) I'm actually very happy with my stoma, especially with how sick I was. It doesn't hinder me at all. So make sure to think about that before potentially reversing. I know it's a long way off though, so not something you need to consider at the moment!

Butting in a bit on what firestopper said - I had my surgery just over a year ago, and in that year I had 4 (very different) holidays - I went on a sun holiday to Salou in Spain during the summer where it was extremely hot & I swam & sunbathed (in my bikini!) with no affects on my stoma! I went on a long weekend to London where we were out walking & sightseeing from morning til night. And I was in Disneyland Paris twice, where we were out from morning to night also, and on every ride & rollarcoaster in the place, with no objections from my stoma either! I don't know if it is a worry of yours about being able to do things like that, but it did play on my mind - very unnecessarily though!

SuperBlanks said...
To answer your questions (and no, I don't mind at all - ask me anything!):
- the amount I empty a day depends on what I eat. Like if I eat a lot of fruit or veg, I seem to have more output. I'd say I empty 5-6 times a day (always once at night too). Sometimes though if I'm just sitting at home I get lazy and wouldn't empty, whereas if I were out somewhere I would as a "just-in-case".
- I use the Dansac Novalife midi bags. They're about 7 inches long (when closed) and 4/5 wide.
- As I said, when I'm home & not doing anything I get lazy & let the bag get very full. When I'm out or working, I would empty when it might only be half full. But I don't think I ever go to the toilet purely to empty my bag - I always go because I have to pee, and then decide to empty or not when I'm in there.

I am not having my ileostomy reversed (I'm actually thinking of making it 100% permanent by getting my rectum completely removed & sewn up, but that's another story!) I'm actually very happy with my stoma, especially with how sick I was. It doesn't hinder me at all. So make sure to think about that before potentially reversing. I know it's a long way off though, so not something you need to consider at the moment!

Butting in a bit on what firestopper said - I had my surgery just over a year ago, and in that year I had 4 (very different) holidays - I went on a sun holiday to Salou in Spain during the summer where it was extremely hot & I swam & sunbathed (in my bikini!) with no affects on my stoma! I went on a long weekend to London where we were out walking & sightseeing from morning til night. And I was in Disneyland Paris twice, where we were out from morning to night also, and on every ride & rollarcoaster in the place, with no objections from my stoma either! I don't know if it is a worry of yours about being able to do things like that, but it did play on my mind - very unnecessarily though!

Hi SuperBlanks,

Thankyou for not minding my questions as well.

Okay you empty 5-6 times a day but less than I at night. But you have a smaller bag. Hmmm....

Thankyou for explaining your bag style as well.

Okay and you don't necessarily go to bathroom to empty bag. Okay, I don't fit there. I go a lot just to empty bag. Got it. I think I'm still early out then with more output etc and it being a loop ileo.

I'm glad you are "good" with your stoma comparatively in that it is much better than when you were sick. It's all subjective isn't it. Thanks for your kind words as well. If my reversal doesn't work my surgeon will put me back in ileo of course. I'm prepared for this aspect of things. The permanent aspect for you to have a potential rectum removal of course would take some thought as well. It's all quite serious stuff isn't it.

As for your holidays, Spain, London, Paris. Wow Girl! Been to London for work, but I would love to and need to go to Spain! :) And Paris! I hear the beaches in Spain are amazing. Good for you. I'm glad you could do all of that and it sounds like you really enjoyed as well!

Well, not being able to do things doesn't actually play on my mind or worry me as I'll get out and about. But thankyou. The covering the ostomy the way I personally like to wear my clothes, does play on my mind. I'm super picky. Picky or not, I think some things are going to change top wise though if this loop ileo remains as active as it is making my bag hard to cover due to bulky, even though I can paste my bms. That's really, all my concern is. One of my vices are clothes but I'll have to make my adjustments regardless of vice. It's all part of life. I have to go with it. It's all I can do. I'll make it! :)

It's nice to express oneself here regarding the changes in some areas we have to make though you know?!

Thankyou so much SuperBlanks. You've been an incredible help. I'm glad again, you are on your way with all of this as well. I really appreciate your detail and I think I know where I am in that, I've an ileo, I'm early out, but....ileo can have more output. I may have to change my tops accordingly. And then just see, how it goes throughout this next year.

Thankyou so much. You're the best! Great forum! xoxo

Post Edited (Vancouver-Girl) : 1/13/2016 7:41:20 AM (GMT-7)