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Zeninu
(@zeninu)
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Joined:7 months  ago
Posts: 3
December 12, 2017 10:10 am  

Hello. I am a new ostomate, as of almost three weeks. A not so great Thanksgiving day. It was an unexpected emergency surgery after a perforation during a pouchoscopy (JPouch) and now I have an ileostomy.  A lot to process! After 9 years of UC I had my colon remove and a JPouch created. Lots of issues with it, but they now think I have Crohn's. Ugh!

I am not considering just keeping the ileostomy.

I am so happy to have found the Vegan Ostomy, as the videos I have been watching are excellent and so helpful! There is a lot to learn and I only had an ileostomy for 6 weeks in 2009, so it is a steep learning curve.

My question is about ostomy product. I am trying to figure out what belts, wraps, stoma protective guards, hernia wraps, I need. I am concerned about getting a hernia, but do not have one. Is the wrap important to prevent one, especially soon after surgey?

I liked the Nu-comfort support belt that Eric reviewed, but it seems like I should be wearing a stoma guard to protect the stoma from being bumped. I bought a stoma shield, but it seems like a support belt also would be helpful to secure the flange and bag.

From the review, it seems wearing both together doesn't work. Things are still a bit sore from the surgery. Is one preferable to another? I feel like I need everything depending on the situation, but as you know these items are not inexpensive. Not sure what insurance will cover yet.

Does anyone have advice for what are the top few items that are best to start with? I am/was pretty active and am concerned about what will happen to the bag.

Thanks for any advice you have!!

Z

 

 


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VeganOstomy
(@veganostomy)
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Joined:4 years  ago
Posts: 1557
December 12, 2017 10:22 am  

Welcome to the forums, Zeninu. 

I'm sorry to hear of this unexpected change in your life, which I completely understand can be overwhelming.

My suggestion is to start with the absolute basics and then add on products or accessories to enhance your experience. 

Support belts, for example, may not even be required for most people. 

Hernia prevention products are best for people at higher risk of developing a hernia and new ostomates, but they aren't necessary for all ostomates. 

Same with stoma guards. Most people won't need to wear one. 

The most important products to focus on are your pouch and wafer (or just a pouch if you prefer one piece systems). If you have a need to expand from there, start looking at extras. 

I hope that helps 😀

 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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FelicityG
(@felicityg)
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Joined:11 months  ago
Posts: 256
December 12, 2017 10:38 am  

Hi, 3 months or so on from my Ilieostomy. 

At this time my can't do without items are my bag covers. Keeps the bag from against my skin, when I shower or bath it keeps wet bag off me, provides camouflage when the bag hangs out. I make these myself 

Eventually I plan to get a guard because I do some rigorous physical activity that involves things that could hit me.

Crohn's Colitis, Ilieostomy, Proctocolectomy November 2017


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john68
(@john68)
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Posts: 948
December 12, 2017 10:59 am  

Hi Zeninu, yep keep it simple, Lots of products and devices out their but as Eric says start with the basics. Find a pouching system that works for you and as for the other devices well they can be experimented with over time. don,t add too many items into your routine at a time cause if one item starts to cause a problem its harder to figure it out. and remember with the stoma powders pastes etc less is more. Good appliance + Good skin= Happy Ostomate. :-) 

ileostomy 31st August 1994 for Crohns


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Zvitusk
(@zvitusk)
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Joined:1 year  ago
Posts: 378
December 12, 2017 11:27 am  

Hey Zeninu,

Welcome! I'm glad to see that I am not the only "Z". Marcie take note. 

Regarding your dilemma. 

Everything after the basic pouching system is there to alleviate your concerns. If you're concerned about hernias,  there are hernia belts. If you are concerned about leakage, there are. ...

A year after,  I consulted with my WOCN.  She took one look at my belly and laughed. " What are you afraid of?" I said "this does this and that does that and I don't have to be worried that the wafer might fall off." She then showed me how to do it right. This cut my dressing time by half. ( and it never happened to fall off .)

Since then, I tried several different systems,  always with an eye for simplicity and ease.

P. S. The manufacturers make it right 99% of the time.  So if it should happen that it does fall off,  you are home free afterwards. 


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Marcie
(@shulmjs)
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Posts: 1359
December 12, 2017 12:06 pm  

Took the note Mr. my "Z"  SO, now Zen (may I call u this)  ?

First off-relax the bet u can!!! Please don't do the stress out thing! but u will anyways.. Doesn't help any--  YOUR still healing.. so do that first.  Follow your Dr. Directions and when your ready to advance in the food department? check us out-we slowly add foods (but don't eat the corn on the cob like Robert) :-) well not  yet anyways..  (nono)

Also while relaxing and healing, get the samples. Eric has a blog on the numbers etc... Always check in with Eric's writings..  These r the first steps for now and these r important steps. 

Also, check in ON us at the members.. Read about what we went through.. What and why we have a stoma.. Then u can message them or make any contact to them, and others will follow.. You will find yourself in many of us.. Trust me your questions will be answered in many forms.. And when your up to it, Join us at the lounge and join in.. we just get on our private jet and we are there!! :-) 

 

****Welcome to the family!!!!!! ***** Get well soon!!!!!!! AND get YOURSELF in order!! You come first right now... M.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Dona
 Dona
(@dona)
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Joined:1 year  ago
Posts: 477
December 12, 2017 12:20 pm  

Welcome Zeninu,

Alway great to have a voice added to our chorus.

You will adapt..and probably have a much better quality of life than before. But, it does take time and as other have said... keep it simple at first.

I also helps to keep a log, day by day, of whats going on and what products you have used. 

( At least it did for me.. I must be on auto-erase some of the time).

Be well.

Onset of severe Ulcerative Colitus Oct.2012. Subtotal colectomy with illiostomy July 2015; Peristomal hernia repair ( Sugarbaker, mesh, laparoscopic) May 2017.


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Robert
(@njewell1)
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Joined:10 months  ago
Posts: 630
December 12, 2017 1:18 pm  

Welcome Zeninu . You have come to a good place here with Eric and all our friends here . Sorry to hear things happened so suddenly for you . I have had my Norman about 15 months now take your time and research accessories I bought different things and then didn't use them much and like you said they are not cheap . I did buy an off the rack wrap that I have only had about a week and a half  and so far I do like it it helps support my bag and helps conceal things . I purchased it from Pouch ware @Ostomybagholder.com found it in some of Erics reviews . Anyway welcome to the group ......

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Marcie
(@shulmjs)
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Posts: 1359
December 12, 2017 1:43 pm  

Robert, doesn't the wrap get to tight for the out put? This is what I worry about, I don't want leaks... And I hate tight fitting clothes-which is not a problem for me now--

Any ladies out there wearing girdles, etc. how does this work? thanks.m.

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zvitusk
(@zvitusk)
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Posts: 378
December 12, 2017 1:56 pm  

I only use a wrap during intimate moments as my wife finds a flapping bag to be disconcerting.  :roll: 


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Marcie
(@shulmjs)
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Posts: 1359
December 12, 2017 4:29 pm  

O.K.  The mio pouching.. One piece... While I was ironing.. I though that the iron was leaking on me.. Nope! IT was me..... Showered etc.  And, Nellie got a new dress.  

I don't seem to be getting a full 3 days use from these....... Nellie hangs in or out there close to an inch.. I use a soft convetx.  WITH- Ekin seal round it for the extra pillow effect for Nellie--she likes that..

ANYONE have this time length with the mio? or other products?  and if so, what do u do about it besides sending the left overs to the needy? The other deeper convetx is too deep.. (mio) 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Robert
(@njewell1)
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Posts: 630
December 12, 2017 4:44 pm  

Marcie the wrap is snug but not really tight at the bottom of it is lose enough to go over my pants if I want it to . What I'm not sure of though is if I should still wear the 1" wide support belt since the wrap has a pocket for the bag . (Eric or anybody have any insight on wearing the belt and the wrap at the same time is it necessary for the belt ?) Sometimes depending on what I eat my output gets a little thick anyway and bunches up around Norman . But the wrap doesn't seem to restrict the flow unless like I said depends on what I eat . At night I don't wear the wrap or any kind of cover I just tuck the lock n roll part of the bag in the waistband of my underwear but then again depending on what I ate it can be liquid output or it can be thicker and still build up around Norman .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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VeganOstomy
(@veganostomy)
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Joined:4 years  ago
Posts: 1557
December 12, 2017 4:49 pm  

Robert, it would be redundant (and really unnecessary) to wear a wrap AND support belt. The wrap should be giving you enough support where the belt isn't needed. 

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Marcie
(@shulmjs)
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Joined:10 months  ago
Posts: 1359
December 12, 2017 4:59 pm  

Might be a stupid question Eric etc.  Why wear the belt?? Anything.?? and if so ?? WHY??

At night I don't wear anything-just a gown.. In fact, when I come home from infusions, I put on a summer dress or now-sweat pants and top and take the undies off. FREEDOM rings here.. am I wrong?  

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Robert
(@njewell1)
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Posts: 630
December 12, 2017 5:07 pm  

Thanks Eric . I was wondering about that . It will make it more comfortable for sure .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Robert
(@njewell1)
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Posts: 630
December 12, 2017 5:09 pm  

Marcie I am no pro but I would think you should have some kind of support .

Subtotal colectomy and Proctectomy , Ileostomy , Ulcerative Colitis


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Bubbles
(@bubbles)
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Joined:9 months  ago
Posts: 193
December 12, 2017 5:13 pm  
Posted by: Marcie

Might be a stupid question Eric etc.  Why wear the belt?? Anything.?? and if so ?? WHY??

At night I don't wear anything-just a gown.. In fact, when I come home from infusions, I put on a summer dress or now-sweat pants and top and take the undies off. FREEDOM rings here.. am I wrong?  

I wear the Ostomy secrect undies  so Bubbles is supported in the pantie  pouch . I do not like the feeling of the bag pulling down from the weight as it fills up . So uncomfortable. 


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Marcie
(@shulmjs)
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Posts: 1359
December 12, 2017 5:24 pm  

Bubbles, Where did u buy these?  I bought some, the panel for the pouch was side ways.. hated that.. thought it was stupid for me.. so, I gave them away- didn't wear them.  Cost 25 dollors!!!!!!  Rather steep ..

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Marcie
(@shulmjs)
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Posts: 1359
December 12, 2017 5:25 pm  

Robert, support for what? Nellie?? 

2014 - 3 strangulations of colon, Ulcerative colitis, removal of colon, illiostomcy named woooh Nellie..


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Zeninu
(@zeninu)
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Joined:7 months  ago
Posts: 3
December 12, 2017 7:57 pm  

Thank you so much for all of the support and advice. I agree I shouldn't buy everything at once. I realize that there is such individual variations and things may change as things settle down.

I think for now I feel I need some support to hold the flange, as the weight of the bag when it fills feels strange and scary, like it will fall off. I viewed your review of the Nu-comfort ostomy belt and it looks like it will help.

It is great to have such a community forum of people who are experiencing similar things. I have been binge watching all of your videos. Great information!! I feel very grateful.

Thanks again.

Z


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