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VeganOstomy
(@veganostomy)
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February 3, 2015 10:00 am  
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Do you have any tips to share when navigating support groups and pages?

My written article about this topic can be found by clicking on the link below.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Eve Sullivan (Evemarys Targaryen)
 Eve Sullivan (Evemarys Targary...
(@Eve Sullivan (Evemarys Targaryen))
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February 3, 2015 3:20 pm  

The first UC forum I found was very positive; it let me know there were other people out there who were going through the same thing I was. A lot of them touted alternative medicine to maintain remission, which was kind of disheartening because various diets and supplements have yet to work for me.

My experiences with Facebook support groups have been overwhelmingly negative. I was part of a very large group where at least half the members thought IBS and IBD were the same thing. The mods didn't want people discussing surgery lest the newly diagnosed be frightened by the realities. One guy posted a photo of his ostomy and people freaked out and kind of shamed him for it. I left the group after that.

I have found Twitter and Google+ generally positive. It is really helpful to see other people having frank public discussions about their IBD symptoms and treatment.


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
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February 3, 2015 3:38 pm  

Thank you for sharing!

It is hit and miss, but we are very fortunate to have so many options available for support: social media, local groups, IBD/ostomy friends, email, online forums, Facebook groups, etc. If one doesn't work, try the next =)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Mark Young
 Mark Young
(@Mark Young)
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March 18, 2015 12:59 am  

Hello Eric, I am also a Vegan Colostomate. Great website and your are a videographer as well, good job clearing up the mysteries involving the due diligence of being informed. You do not seem to be harboring a hidden agenda, this helps build confidence and grants you the opportunity to give sound advice.
I need to get my invention reviewed. I have sold only 4 over the past year and this is because of some reason I am completely oblivious to. Like you, I only have an intention to help people like us.

Best Regards,
Mark Young


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Pat
 Pat
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August 23, 2017 1:08 am  

You have been a source of enormous help and support to me, mostly because you give information, not advice! You have LOTS of information, not just for getting started, but for living with ostomy. You have a positive outlook and you've ferreted out lots of tips and tricks that are so useful. Thanks very much!


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VeganOstomy
(@veganostomy)
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August 23, 2017 10:47 am  

You are quite welcome! Thank you :)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Fiona Padfield
 Fiona Padfield
(@Fiona Padfield)
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January 26, 2019 5:29 am  

Hi, Thank you for this site. I have an iliostomy and have just completed 8 weeks post op. Question:
Before my operation I was vegan. I want to reintroduce things like spinach, broccoli and cauliflower in to my diet. If you liquidise them does this mean they become digestible. What I mean is, is it just the bulk that causes a problem/blockage or even liquidised will they pose a problem? Same with mushrooms. Is it just because they are fleshy that they can block the stoma or is it something in their content that that causes difficulties? I'd love an answer because I'm so sick of eating white bread rubbish and crave to go back to my old diet. Thanks.


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VeganOstomy
(@veganostomy)
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Joined: 6 years ago
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January 28, 2019 3:12 pm  

Hi Fiona, that's a great question.

If you were to blend all of those foods (i.e. to make a soup), then the risk of a blockage would go down to almost zero. I say almost because blockages aren't always a function of food getting stuck - sometimes there's a kink in the bowel that causes it.

But blending is a great way to start, then you can moved to well cooked (to the point where food is mushy) until trying raw or lightly cooked veg.

Chew well, take it slow, and enjoy :)

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Karina Sengupta
 Karina Sengupta
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September 20, 2020 9:32 am  

My mom is an Ostomate (Feb 2020) due to 23 years of debilitating IBD. We live in India and the support groups seem sparse from our research, the condition less known and product selection skinnier. Your page has given me immense reassurance and relief.

This one is so particularly true. My Mum had diarrhea - I suspect due to coffee. Our friends and family blamed it on spicy food (which traditionally aggravated her IBD) and dismissed that coffee could have caused her diarrhea. Upon further research I discovered coffee could cause diarrhea. So this article about how to support is spot on. Thank you for your project of passion and wishing you all the best!


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john68
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September 20, 2020 4:04 pm  

Hi Karina and welcome, just as many food and drinks cause loose output starchy foods like potatoes etc are a great help to balance things out. Eric always suggests keeping a food diary. Best wishes 👍

ileostomy 31st August 1994 for Crohns


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VeganOstomy
(@veganostomy)
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September 23, 2020 1:27 pm  

Thank you for finding the website, Karina. Has it helped your mother to be off coffee? I know that sometimes coffee can have rather immediate and unwanted effects for some people, while it's completely benign to others. Same with the spicy food you mentioned! Ironically, when I was having a difficult time with IBD flares, spicy foods were better tolerated than bland food! Anyway, best of luck to you and your mother.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Dona
 Dona
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September 23, 2020 5:31 pm  

Hi Karina and welcome,

Its true lots of things will have an effect on output. Like john says, begin a food diary for you mom if its possible. Or at least make note of whats going on each day, sometime it just takes time to figure out what works best for each of us.

 

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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