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Hoping to find other people with Ostomies

Had mine since 19 (10 years now) doesn't appear to be very common in my age bracket. Older and younger people (whilst both having unique insights and experiences to offer); typically have pretty different lifestyles.

So anyone in their late 20s or early 30s have an Ostomy? #Ostomy #Colitis #CrohnsDisease #InflammatoryBowelDiseaseIBD #IrritableBowelSyndromeIBS

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Need advice

Hey everyone! Looking for advice as I prepare for ileostomy placement/surgery for the first time after being diagnosed with crohns 8 years ago. I’ve failed 3 biologics and surgery has become my only hope for some semblance of normalcy. Or should I say stability? I’m looking for advice or stories from everyone who’s had or has an ostomy. I’m worried about everything, particularly intimacy issues after, comfort, pain, self conscious thoughts and feelings

#CrohnsDisease #Ileostomy #Ostomy #InflammatoryBowelDiseaseIBD #Colitis #Humira

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Tips for cold and flu season?

I am getting over a cold this week and have found that being sick with my ostomy has meant that my #Ostomy output has gone up, and my baseline lethargy has increased significantly.

It seems like as I get older with IBD that it takes more for me to recover from these common viruses that we all experience from time to time. So, I spent the past week not doing much and just focusing on resting to get over the cold, but I wonder is there more I could be doing to help my body when I am sick? What tips and tricks do you all have when you have a cold?

#CrohnsDisease #InflammatoryBowelDiseaseIBD

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Happy World #Ostomy Day

Happy World Ostomy Day! If you had told me at 23 when I consented to a proctocolectomy that it was only the beginning of living a full life I may have laughed at you. I had surgery before we had communities like this-- when I had my colon, anus, and rectum removed we were right at the cusp of when these communities started. So, I had no idea that having an ostomy would allow me to travel, eat food I had only read about, and be present for life in a way I never was with active Crohn's Disease.

Since having surgery almost fifteen years ago-- I have passed law enforcement physical fitness testing, been present for holidays, taken road trips for hours without needing to stop for the bathroom, swum in the ocean for hours, gone on vacations, hiked mountains, gone backpacking, and in general, live a full life that is only possible because I have an ileostomy. Always grateful for my bag, and incredibly grateful for these online spaces where we find we are no longer alone!

#CrohnsDisease #InflammatoryBowelDiseaseIBD #WorldOstomyDay


Balancing responsibilities with #InflammatoryBowelDiseaseIBD

Balancing all of life's responsibilities with a chronic illness is so challenging! When I have more symptoms and IBD complications, I sometimes feel like I can't keep up with my daily life. The floor goes unvacuumed, dishes pile up in the sink, and I feel perpetually behind. I recently have been practicing self-compassion and letting go of self-judgment and self-criticism.

Allowing myself to let the dishes pile up a little bit when I am not feeling my best frees me up to lean into self-care. I also have outsourced or asked for help with things like hiring a laundry service to get my laundry done or asking a friend to help me with a grocery pick up.

What tips or tricks do you use when your fatigue or symptoms are impacting your ability to complete your daily responsibilities?

#CrohnsDisease #UlcerativeColitis #Ostomy #Selfcare

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My Kids Have Some Encouragement And Advice As You All Begin A New Week

A few things my children would like you to remember today:

1) Listen to your body and rest if you need to.

2) Ask for what you need (in Rose’s case - while standing on your hooman slave)

3) Take time for self soothing; you deserve to treat yourself well 🥰

Here’s to a new week...Have a great one everyone!

#TheMighty #Intestinal Dysmotility #AnorexiaNervosa #Ostomy #Epilepsy #TemporalLobeEpilepsy #Dysautonomia #Hypoglycemia


Calling all ppl. With GI conditions

Do you live in the United states and live with IBD/IBS/ostomy? Have you heard of ally's law or restroom access act?
Bathroom anxiety is a real issue especially when in a flare and when the closest restroom is an employee only restroom we run into a problem.
Fortunately there is a law that can back us up requiring all stores to open their employee restrooms to the people with GI conditions that require immediate access to a restroom.
Unfortunately this act is only passed in 17 states. I am currently starting the process in my home state of Florida but there is so much I could do alone.
I need as many people as possible to send stories so we could show this something our community needs.
#CrohnsDisease #allyslaw #IBDAwareness #Ostomy #IBS