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Early days with iliostomy, quick question  

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JTVT
 JTVT
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November 14, 2019 11:29 am  

Hi All,

Just joined and will post an intro and hopefully contribute more in the future but just got home from hospital after several weeks after unexpected colectomy. More to follow in intro when I have a bit more energy. 

My quick question is: what do you all recommend for a support belt for the early days? I’m a smaller female (5’ 6”, 120 lbs at normal wt) to begin with but currently down 25 or 30 lbs and will be for some time (thanks post-op ileus) so looking for something that won’t break the bank but allow some bag support for under clothes and starting to rehab with treadmill walking. So depressing as used to bike/hike for miles and miles :-(  

Once I back to my healthy weight I’ll likely invest in something custom but for now just need a little support. I should mention I have super thick, low volume output probably from low intake and difficulty with hydration for now.

thanks so much for any recommendations. I’ve already learned a ton from this site in the last 72 hours. JTVT

 


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VeganOstomy
(@veganostomy)
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November 14, 2019 12:11 pm  

Hey JTVT, welcome to the forums!

If at all possible, try not to wear any support belts or accessories until you are healed up but considering you've been in the hospital for several weeks, you may already be as a safe point. 

You will likely be able to find some ideas in the following articles:

Clothing Guide: WOMEN

Ostomy Accessories Guide: Support Garments

Ostomy Accessories Guide: Accessory Belts

Ostomy Accessories Guide: Stoma Guards

There is no "one-size-fits-all" solution, and your needs will likely change as you gain more weight and become more active (and don't worry, you'll be back to hiking and biking soon enough!). 

I've been a fan of wearing my appliance sideways for several reasons. One of those reasons is that I don't have to worry about tucking in my bag under my pant belt since it lays across my abdomen just over the beltline. 

I do like to wear wraps, which keeps my bag outside of my pants, but still supported and underneath fabric for cover and concealment. That might be a solution for you in the meantime.

Please, continue to post questions. I hope this information has been helpful. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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john68
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November 14, 2019 12:34 pm  

Hi JTvT, Welcome on board, Your in early recovery and don’t judge how things will be in this early stage. You will soon be back to normal life. The very best with your recovery 👍

ileostomy 31st August 1994 for Crohns


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LK
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November 14, 2019 2:30 pm  

JTVT...Welcome to the best site ever!  Eric is a genius! We are here for you. It can take time to get answer sometimes but they do come. I hope you are healing  well. This too takes time, listen to your body. weight gain will come back as you heal & can eat  better. Smaller meals several times a day is good all around. Try and stay hydrated. Lots of fluids all day & with meals. 

 I'm.  A 62 yr. old lady,  ileostomy 10 +yrs.  When I need a little support I wear one of my of elasticky spaghetti strap shirts from  summer, I cut the straps off and slip it down. It's something I wear under a looser shirt.  You can cut an X in the shirt to match where your pouch is and tuck pouch thru the that. You may want to hand stitch around the hole to prevent material running, where the X is once you decide how big you need for the hole.  As Eric said,  give yourself healing time first, then you should check with your GI.      At this stage, thicker output and a tighter garment, output  may get under the base plate & cause leaks. Tingly &  itchy can be a leak sign.  Don't be a stranger here! All the best. 

Linda 

Linda


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sjlovestosing
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November 14, 2019 2:45 pm  

Hi JTVT, (does the VT stand for Vermont, perchance?) 

Welcome! You will find so much useful information and support here. However, don't be overwhelmed by the info. You are just starting out, and there is much to learn, but take it one step at a time. We have, in one way or another, had similar experiences and will try to help you in anyway we can. Eric is a fountain of knowledge and supplies us with all sorts of encouragement and help.

God bless!

Stella

 


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Tony
 Tony
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November 14, 2019 6:02 pm  

Hi @jtvt,

 

Welcome to what I love to call a haven for ostomates. I can't weigh in on your question, but I did want to extend a greeting and to encourage you to keep the questions and interactions coming. Those of us who have gone before you in this community will enjoy helping make your journey less rocky. Life does get back to normal with some differences, and you'll be pleasantly surprised with how little things will have really changed once you get settled into your new normal. The greatest difference for me was not how problematic the ostomy could be but how much better I feel. I'm feeling better now in my 40s than I ever did in my 30s. I think you'll find this sentiment echoed in one way or another practically universally among fellow ostomates.

Tony
Crohn's diagnosed in 1995.
Spontaneous colon perforation and emergency end ileostomy surgery in 2018.
No colon - still rollin'!
No eyesight - life still bright!
Stomaversary - December 4th


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JTVT
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November 16, 2019 7:41 am  

@veganostomy

Thanks so much, Eric. I’m 3 weeks post-op already after over 2 weeks failed UC salvage therapy but had healing/ileus issues do to malnutrition, anemia, you name it. My incisions are doing better so hopefully can start some light activity. Need to get walking (inside, as it’s a sheet of ice where it live) as can barely climb stairs right now and return to  a demanding job in 6 weeks is the goal/necessity.  I will heed your advice and avoid anything too aggressive in terms of support belts, etc.  just can’t stand this Hollister bag with clip flapping around! Will eventually try different products but I’m at the stage of worrying about any deviation from what I just started to become “comfortable” with. May try just a close tank top as someone else suggested. Again, thanks for establishing this site. it is a comfort as all this sinks in. 


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Bill Bell
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November 16, 2019 7:51 am  

I use a Nu-Hope support belt.  I have never had a hernia (that's why I wear the belt).  It keeps the bag in place and keeps everything supported.  I do cardio exercise 3 times a week and walk and ride a bike every day for several miles.  The support belt allows me to wear the bag vertically or horizontally (I do this when playing water volleyball weekly).

Everyone to their own, but this is what works for me in over 3 years.

Bill
Ulcerative Colitis... Ileostomy June 2016


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JTVT
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November 16, 2019 7:51 am  

@dlkfiretruck

This is a great idea (and cost effective). Thanks!


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JTVT
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November 16, 2019 7:54 am  

@sjlovestosing

Yes! And we are really feeling that Arctic Blast. Stay warm. 


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LK
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November 16, 2019 7:16 pm  

JTVT...I have  tried the bag with the clip and am   still wondering why they make it to this day. When your feeling better, try and get samples your interested in  trying "ahead" of time so you have them when your ready. 

Tho the roll up is more tolerant then the clip,  It still  annoys me when I get poked by the corners. So, after doing laundry a few years back, I was sorting out our holey socks & I got the idea to cut the elastic part off and stitch across the bottom area that connected to the sock. It looked a bit like an envelope. I slipped the velcro closed part into the envelope and there you have it! The socks were kids socks so no need to hold it in place with anything &  it makes a well cushioned area that does not show extra bulk under my clothes. I'll send pictures to Liza,  (squeakyandliza) she can post it here for me when she has time, so you can see what I'm talking about. This is a heads up Liza!   It was so easy to do I should have done it years ago! Even if your not a sewer, it can be stitched by hand  or even hot glued closed for that matter. Turn inside out to toss in the washing machine if affected by a leak is all it takes! Feel well soon!

 

 

Linda


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john68
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November 16, 2019 7:36 pm  

Some body give that woman a medal, simple Linda but I like it 👍

ileostomy 31st August 1994 for Crohns


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SqueakyandLiza
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November 16, 2019 8:11 pm  
Posted by: @dlkfiretruck
I'll send pictures to Liza,  (squeakyandliza) she can post it here for me when she has time, so you can see what I'm talking about. This is a heads up Liza!

 

 

Hi JTVT,

Here is the first picture from Linda...

1573953082-658B064F-D85F-43DE-8B01-85F2EFBD35EE.jpeg

-Liza
“May your day be bright and your bag be light.”


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SqueakyandLiza
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November 16, 2019 8:12 pm  

And here is the second one...

Great idea Linda!!

1573953146-7C935285-9CBA-41F2-9B0D-CBAC98C986E6.jpeg

-Liza
“May your day be bright and your bag be light.”


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JTVT
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November 16, 2019 11:01 pm  

@dlkfiretruck

Thanks Linda! Yeah I have to ditch these clips soon. Always in fear they’ll pop open and uncomfortable. 


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LK
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November 17, 2019 5:24 am  

@jtvt...clip pop open and you'll get a flood if it were me!!! Lol! I could not figure out what made me try them in the first place. They're  bigger, harder and hurt more on the leg, one broke too easy too. 

John, thank you. But not worth a medal, I'm Cheap!  Plus I just can't afford one from the company.  I've never paid more then 5 bucks and I have  four of them LOL. I've never had a post op-hernia but the shirt sure supported my back extra when I was canning this summer. 

Liza, thank you so much for posting those pics for me. That sock top gave a whole new meaning to "put a sock in it" for me! lol.

I love it at  night, especially under my pj bottoms, no more leg jabbing for me! And, inexpensive to boot! If anyone tries this let me know what you think please.  I'll write  a book!!! NOT! But I do find it very helpful and comfortable.

Linda


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LK
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November 17, 2019 5:27 am  

A quick tip....sew the depth you want before you cut the elastic cuff off the sock. This prevents the double material from riding up and not being sewn together.

Linda


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VeganOstomy
(@veganostomy)
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November 18, 2019 10:42 am  
Posted by: @jtvt

 just can’t stand this Hollister bag with clip flapping around!

I'm not a fan of clips at all. Hollister makes a great "velcro" closure, so if you like the bags and wafers, see if you can get the version with the "Lock n' roll" system. 

@dlkfiretruck That sock idea is fantastic! I tend to wear pouch covers, which achieve a similar goal, but I love what you did there!  

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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JTVT
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November 18, 2019 11:01 am  

@veganostomy

Im going to be bold today and try my 1 Hollister lock and roll bag sample. I’ve been reinforcing the clips from the hospital with tape when I leave the house and at night!

I am wondering if it will be possible to keep the Velcro systems clean with the super thick output I have. With the clip and thin spout system I can create a deep cuff at the end and squeeze the bag like icing a cake (sorry for the food reference, haha, everything comes back to food with me right now.  So hungry.)  Everything stays clean. Wonder how to avoid getting thick output all over the end without a cuff? Already using lube/deo and occasional water.  JTVT

 


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VeganOstomy
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November 18, 2019 12:03 pm  
Posted by: @jtvt

I am wondering if it will be possible to keep the Velcro systems clean with the super thick output I have.

I've never had an issue keeping the outlet clean, and my output is quite thick for an ileostomy. 

The method I use to clean the outlet has remained the same for many years, and it's quite easy. Here's a video showing how (not graphic):

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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