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Early days with iliostomy, quick question  

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dogtalkerer
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November 18, 2019 1:10 pm  

the Coloplast sensura cleans up even easily.    I never need to clean out the inside of the tail piece thanks to the emptying design of the Coloplast sensura.  I do wipe the plastic fold overs  with windex wet paper towel.  I use paper towel over toilet paper, for me it cleans easier.

if my output is runny, then sometimes I will clean the inside.(colostomy)


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dogtalkerer
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November 18, 2019 2:44 pm  

you can see the velcro dot on the left, that keeps the tail piece tucked into the cloth cover(right), no sewing of old socks needed.  i have added a walmart velcro dot higher up in the bag to shorten the length even more.Image preview


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Tony
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November 18, 2019 3:04 pm  

I use the ColoPlast SenSura Mio Clik partly because of its spigot-style drain. It makes a handy little funnel. The narrow opening makes it a bit easier to aim. Can't see my hand in front of my face, so I need all the advantages I can get with regard to aiming and not making a mess. For cleaning I use a nonalcoholic baby wipe. Easy peasy lemon squeezy.


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JTVT
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November 18, 2019 4:43 pm  

@veganostomy

This is super helpful. Thanks. I’m going to need to get used to generating a lot more waste than I typically do.  Trying to save bags to reuse, use biodegradable, Dr. Bronner’s, yada yada but my water, hydrocarbon and general trash production is off the charts right now. Hopefully I’ll be able to reduce it eventually. 


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VeganOstomy
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November 18, 2019 5:34 pm  
Posted by: @jtvt

I’m going to need to get used to generating a lot more waste than I typically do.  Trying to save bags to reuse, use biodegradable, Dr. Bronner’s, yada yada but my water, hydrocarbon and general trash production is off the charts right now. Hopefully I’ll be able to reduce it eventually. 

I do appreciate your mindfulness around the environmental topic and can say that I have met people who rotate with several bags (wearing one while the other dries, etc.) and it will be interesting to hear about your experiences with minimizing ostomy supplies waste. 

Because most of these supplies are meant to be used only for a very short while, they aren't manufactured to be very durable, although it would be an interesting idea to have bags designed to be reused for months (assuming they stay odor-free, sanitary and all that). 


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dogtalkerer
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November 18, 2019 6:15 pm  

lots you can do besides wearing a bag til it stinks from 10ft away.   plastics tend to be not odor proof. .  I've tried to rinse a bag after every emptying, made little difference in stink free longevity. 

instead of worrying about the bag. 

compost all food wastes, consider composting your own waste. things you toss in garbage tend to go towards methane, much worst than backyard compost CO2.

try living without a frig for 10days. I've done it for 10yrs.   else fill frig/freeze with water bottles to take up empty space if you don't use it all.     , this will allow frig to run more efficient.   take sponge bathes.

use all rechargeable batteries..........

list can go on and on.  you shouldn't feel you have to compromise ostomy products, give yourself a break on that one.  do a carbon trade.

 


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JTVT
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November 18, 2019 6:59 pm  

@dogtalkerer

No frig for 10 years! That’s impressive. I do my best in the other aspects of life you mentioned and won’t be militant about the ostomy stuff. Will try to minimize ostomy associated waste the best I can once I figure out the basics. Medical waste by nature is challenging. I’ll share in the future if I discover anything that may help others similarly concerned. It’s going to be a looong journey. 


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pink alpaca
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November 21, 2019 5:44 am  

@jtvt

Hi

My advice would be to take things slowly,  I had an emergency ileostomy this February and like you had lost a lot of weight. It's really difficult when you've been active but take everything one step at a time,  it's very early days.  You will regain your energy and find your "new normal." Just go slowly.

RE: Support garments,  do you have a Stoma Nurse, if you have, she should be able to offer advice.  Not sure where in the world you are, I'm based in the UK and use Vanilla Blush for preventive hernia support, they have some lovely vests and light support briefs.  I didn't start wearing these until June and then on the advice on my stoma nurse,  Suportix is another great company (UK) they come and measure you so you get exactly the fit product and will measure you for a belt or pants. 

This is a great website, as I'm sure you've already discovered, everyone is very supportive, a great community of helpfulness.

Hope you are feeling better with each new day.

Caroline


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JTVT
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November 21, 2019 6:38 am  

@pink-alpaca

Thanks Caroline for sharing and support. I’d love to buy some support wear but I’m realizing it’s too early. Seeing stoma RN now for what is likely an area of mucocutaneous separation around stoma. Nothing major but geez I would have loved at least SOMETHING to go without a complication.
I agree, feel like having unplanned surgery when sick and possibly on potent immunosuppressives (for me IV steroids and cyclosporin) has made for a long journey back. Trying to cut myself some slack.
It’s the weirdest thing. I still can’t climb stairs etc without a lot of difficulty even after 1.5 weeks post discharge , particularly on my left side. It’s like the muscles are 50% weaker throughout my left leg. I am right-hand and leg dominant so guess it makes sense. Did you notice anything similar? Guess you never notice these imbalances in yourself when active. Maybe I’ll come back a more balanced athlete in the end! 

Wish you the best in your own journey. JTVT


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Tony
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November 21, 2019 6:48 am  

@jtvt

The leg weakness sounds like what happened to me postop as well. I sustained some perioperative nerve damage manifested postoperatively by some tingling in the left thigh and slight loss of sensation in the skin of the lower abdomen. My legs were suddenly incapable of holding me up at all in the immediate postoperative period, with very gradual increase in strength starting with the right leg. Nerve function also affects strength. My strength in the left leg returned to normal after a few months, but do make an effort to exercise your legs. I found that the awkwardness of bending with the way I was accustomed to doing preoperatively forced me to learn to lift with my legs a lot more, so that helped me get my strength back, again starting on the right with the left to follow closely thereafter. I had other complications that kept me from getting up and about as soon as would have been ideal, so the muscle tone and strength may return more quickly for you.


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sjlovestosing
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November 21, 2019 7:27 am  

Hi JTVT,

Take things slowly. You don't have to start up like gangbusters. Doing leg lifts in a chair maybe a good start - just remember to tighten those abs while doing them so you won't put a strain on the stoma area and end up with a hernia. Most importantly, before doing any exercise, ask the advice of your surgeon or stoma nurse. Good luck!

Stella


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Tony
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November 21, 2019 7:31 am  

@sjlovestosing

Thank you, Stella, for tempering my reply with some healthy caution.


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SqueakyandLiza
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November 21, 2019 7:46 am  

JTVT,

I too had something like Tony is describing, only mostly in my right leg. It is a weird sensation, like sort of numb, yet hypersensitive to any touch. 

My legs were so weak after my time in the hospital that I had to use a walker, for about a month at home, and another month or two when leaving the house for doctor appts. I also had a physical therapist coming to my house a couple times a week. I think part of the cause was because I was very septic at the time of my surgery. 

The good news is things do get better. I have the full strength back in my legs - I even walked a 5k last month. It just takes a little time. Have you had blood work done?  I know as my white blood count went down and my protein went up, things got better. I was also very anemic, and had a series of iron infusions, which also helped. 

Hang in there!!


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JTVT
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November 21, 2019 1:39 pm  

Damn, I’m still so confused about support belts. Should I have been wearing one of those narrow belts that attaches to the appliance flange to support the bag from day 1? I’m not talking about a wrap or anything more aggressive but those narrow belts they carry in my Ostomy supply catalog? No one provided one or mentioned it. I use those little belt tabs for burping and peeking at my stoma but not for a belt! Ugh. Now wonder if I screwed up my healing and hence the mucocutaneous separation I’m now seeing.  I’ve just let the bag hang for the the past 3+ weeks as I generally get a good skin seal and still have other incisions healing. Sucks to think I could/should have prevented this. 


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john68
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November 21, 2019 1:50 pm  

Hi JTVT, Nope you ain’t done any thing wrong at all, Yes the belts and other devices help with the weight but they are personal choice, It’s easy to look at what others do and yes it’s a great guide. But it’s not to say that you will need all or any of these accessories. I have never worn a belt of any kind. 


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JTVT
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November 21, 2019 2:01 pm  

@john68


Thank you for the reassurance. I didn’t even think to use those tabs to relieve weight. Just tucked the bag into my pants and went home...finally! The ostomy RN will hopefully tell me tomorrow what I need to do to heal that hole at the suture line.  And maybe to “wear a belt!” Who knows, too many ostomy supply permutations for me to wrap my head around. 


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john68
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November 21, 2019 2:06 pm  

Don’t over think 🤔 It’s product over load. Eric has done a video about it. Definitely worth taking a look at👍


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Tony
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November 21, 2019 4:23 pm  

@jtvt

It's such an anxious and unpleasant period of time, those few weeks after surgery, so overwhelming. We all understand that getting to the point of needing an ostomy is a special kind of low for a person, and we are here for you.

 

It can be so very difficult to foresee the individual needs of a new ostomate. The abdomen is quite tender in the beginning, so it's hard to say the effect that wearing a support belt would have had. I was told by a nurse that that's why medical personnel don't usually recommend one right away.

 

Trying to wrap my head around all the available options with regard to supplies was like pouring over legalese. It was a huge relief to find VO where so many who had gone before me kindly helped to demystify things a bit, making it easier to figure out what I didn't need and narrow down the possibilities of what to try. Be gentle and patient with yourself.


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VeganOstomy
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November 21, 2019 4:45 pm  

@jtvt

My advice when it comes to both supplies and accessories is to be minimal. If you don't need or see a need for a belt, band, ring, cover, guard, etc., don't worry about it! 

I went through so many different types of products simply because I wanted to report my findings with others. But in my daily life, I tend to only use a pouch, wafer, and pouch cover most days. If the need arises for something else, then I will use that too, but often only temporarily. 

There are certainly enough products out there to cause you to go mad, so pace yourself. 

Here is the article/video that @john68 mentioned: https://www.veganostomy.ca/ostomy-product-overload/  


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