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The Stuff You Don't Hear About IBD  

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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2176
December 1, 2014 9:30 am  

Let's talk about all those "hidden" symptoms of IBD!

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 “V” Sullivan
 Eve “V” Sullivan
(@Eve “V” Sullivan)
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December 1, 2014 4:28 pm  

Thank you so much for telling it like it is! <3


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Anne
 Anne
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December 2, 2014 12:22 am  

Thank you for sharing it like it is. No fluff. Many people including myself have experience these things.


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Cherie
 Cherie
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April 6, 2015 9:34 pm  

Great to hear the direct honesty and no holding back on issues all us IBD people face, it is often a hard subject to talk about and I myself face right now with the worst abcesses and fistulas leading me down the path of an ostomy right now. 7th week in the worst pain I've ever experienced ever, 24/7 no relief no pain medication can even touch and worse than before I had my bowl resection in 2004.


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
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April 6, 2015 9:37 pm  

Abscesses and fistulas are among the most painful symptoms to have, but I found tremendous relief with my ostomy. If you end up going down that path, I have no doubt that'll help you too. Good luck!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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AB
 AB
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April 7, 2015 1:09 pm  

More than anything else on your list for me (and this contributed to the long time it took to diagnose me with Crohn's) is crippling, debilitating abdominal pain. Thanks for sharing your story!


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AB
 AB
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April 7, 2015 1:11 pm  

That tweet was included unintentionally, can't delete/edit...


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2176
April 7, 2015 1:13 pm  

Just did :) Thanks for reading!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Katt
 Katt
(@Katt)
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Joined: 4 years ago
Posts: 1
October 27, 2015 12:38 pm  

....thank you..... I was able to laugh a little at this horrible disease...I may steal some of this article when 'splainin' what the hell is wrong with me :)


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VeganOstomy
 VeganOstomy
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October 27, 2015 12:46 pm  

Be sure to include the photos for any doubters! LOL Take care!


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Jayne Olson
 Jayne Olson
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Joined: 2 years ago
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June 21, 2017 6:09 pm  

Hey there, yup Crohn's is nasty. I recently had a total proctocolectomy with end ileostomy because of lovely fistulas.


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VeganOstomy
 VeganOstomy
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June 21, 2017 6:36 pm  

I hope you're feeling better after your surgery.


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betty
 betty
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May 28, 2018 3:09 am  

Bonjour Eric,
j'ai vraiment l'impression que c'est mon histoire ! j'ai été diagnostiqué crohn j'avais 21 ans, j'ai subi trois lourdes opérations ( occlusions, sténoses, fistules, colon cicatriciel). les séquelles d'opérations importantes et notamment une incontinence anale à 30 ans. En octobre de l'année dernière : occlusion, sténose et opération. je suis à présent iléostomisée et j'ai 48 ans. Je me demande pourquoi ils ont attendu aussi longtemps pour me sauver la vie ! pourquoi nous laisser subir toutes ces souffrances. Je sais que je ne guérirai jamais de la maladie de crohn mais je sais qu'a présent je vie mieux et j'espère que cela ira encore mieux à l'avenir ! voila voila ! je tenais à vous remercier du fond du cœur pour tout ce que vous faites pour nous aider. Vous êtes ma référence et grâce à vos conseils j'ai un appareillage parfait ! Belle journée.


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
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May 28, 2018 3:28 pm  

Merci, Betty!

Je ne parle pas français (je suis un mauvais Canadien!), Mais Google Traduction fonctionne très bien!

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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Sabraiya
 Sabraiya
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October 24, 2018 9:28 pm  

Talk about blood clots next.


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Cindy
 Cindy
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December 6, 2018 4:33 pm  

I was not offended in the least by your potty mouth, or the graphical nature of the article. Sadly, I've suffered from all of these things but mouth sores (thank God for small mercies!). I'm just thankful tgat my Crohn's is under control with Remicade and my stoma. Getting this info out there will hopefully help someone who may not have considered that a weird symptom is related to IBD. Great read!


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Klancee Call
 Klancee Call
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December 6, 2018 4:58 pm  

Thank you for the extensive report. It was very informative. Yes it had some graphic pictures in it but they were needed to help me see exactly what I was reading. And not only that I didn't have to open them up to see them That was very impressive how you put a byline of what it was and an arrow to open it up. Thank you for this very informative article. I learned a lot. I was diagnosed in the late 70's with IBD, and never had anything done, the doctor had no information for me except to change my diet.. It seemed to take care of it self and I would be OK of and on for long periods of time. Then bam for no describable reason I could see I would have trouble again for longer periods of time. I ended up not being able to hold down jobs, it was very scary to me, I would get hired and then fired, or quit. My dr helped me get on disability so I would have some kind of income to help. Bowel blockages became my main trouble. I finally had a colostomy in 2017, so for over 35 to 40 years I dealt with it. I cannot understand how I dealt with it for that long without having more input from my doctors. When I would ask questions, Their answers were always you are eating wrong you are drinking to much, you aren't doing enough exercise, etc. What ever and I would just quit going to them, and end up in the hospital again. Looking back I now see that I also played a part in not getting better medical care, I was never given the right information to make me understand what it was. OK I have gone on long enough, but thank you again.
Klancee


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Hilary
 Hilary
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December 6, 2018 5:05 pm  

Eric, Hilary here (you taught me everything I knew about ostomies); a couple of my sister-in-law’s siblings suffer from this and I knew it was pretty severe but I never knew the whole body aspects of the illness! Another really well written (immune to profanity here) article which really tells it like it is. All the best and happy holidays!


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Joannie
 Joannie
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December 6, 2018 7:18 pm  

Loved how you laid it all out in plain English. I’ve lived with my nasty Crohns since 1985 and have gone through most of what you mentioned. I really enjoy reading your honest articles.


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VeganOstomy
(@veganostomy)
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Joined: 5 years ago
Posts: 2176
December 11, 2018 11:31 am  

Thanks for reading, Joannie. I hope that things have been better for you.

Just your friendly neighborhood ostomate.

~ Crohn's Disease ¦ Ileostomy ~


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