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Inflammatory Bowel Disease and ostomies cause crippling isolation. Whether you live in a rural community or a large city, it can be hard to find someone who understands much less relates to your challenges.

If you’re like me, you joined Girls With Guts because you found a safe place to ask questions, discuss very private matters, and build relationships. And as we each grow in our advocacy for our own health, we realize empowerment begins with awareness.

Every year, December 1-7 is observed as Crohn’s and Colitis Awareness Week. These days are meant for educating people about IBD along with addressing the concerns of this invisible illness. Much of that comes from what YOU have to say! Throughout the week we asked our Girls With Guts about living with IBD and received so many great answers! You can still join these conversations on our Facebook Page.

“For me, because of IBD, I have missed out on important events BUT I have gained over 20K new

sisters (all of you!)”

“I’m a chronic bada$$; sometimes because my a$$ is full of burn, pain, never ending

diarrhea. Other times because I am a strong woman cruising on motorcycle like a bada$$!”

“My UC has given light to who my true friends are. I have also have met some great friends

who understand along the way.”

“Ostomy supplies are expensive, and sometimes I have to argue with insurance about what

they’re willing to cover. My ostomy has given me my life back though.”

Despite having IBD, I have been able to _______________.

“Work as a nurse. Which gives me great insight on both sides. On bad days I come home to

happy dogos who are ready to cuddle and drink tea.”

“Survive, watch my child grow, marry the girl of my dreams. “

“Many things… but having 2 healthy babies is what comes to mind first and what I’m most

thankful to have been able to do despite having Crohn’s!”

“Graduate high school, graduate from a 4 year university, begin my career as an

elementary school teacher, carry my child to full term, have a successful c-section, and raise my child

(trust me though, there are many trials and tribulations within those successes).”

“Have fun with my kids and work full time. I haven’t always been able to, but I’m thankful

that I can right now.”

“Graduate from college, graduate the police academy; fulfill my dream to become a police officer.”

“While I still had my colon, people I worked with thought I had an eating disorder because I ate small meals or snacks every 2-3 hours. I was even asked several times for what my weight loss secret. When I told them I was extremely sick, people were so embarrassed. Now with my ostomy most people I encounter have no clue what it is. But while pregnant with my first child, she pushed my innards toward my stoma so people thought her head was off to the side.”

“That it’s ‘just diarrhea’; and I was being overly dramatic by having all those doctors appointments and medications.

My Ex became convinced I would ‘mess the bed’, even though it had never happened (and still hasn’t happened 13yrs later). He used my illness to strengthen his ‘right;’ to withhold affection and cheat on me.

That I was ‘being selfish and wanted to be sick’; for not conforming to their suggested fad diet they were convinced would cure me.”

What do you do to make it through the rough days in dealing with IBD and/or an ostomy? Offer up

your advice!

“Watch a movie, read, or write. Or all three at the same time 🙂 With some levsin, tylenol, and a heating pad :D”

“Curl up with a soft blanket and doggos”

“Chill in bed, play my favorite video games or knit and crochet. I try to take my mind somewhere else when the sads come.”

“Hot tea or just plain hot water, warm bath or shower and heat pad.”

“I take a deep breath and calm myself down. I usually talk to my mom or my S.O. about it. And if I’m able to, I’ll take it easy for the rest of the day. Listen to calming music or watch a favorite TV show to make me laugh.”

“Drink warm cup of chamomile tea, put on comfy clothes and my fuzzy bathrobe. Snuggle on coach with heating pad and don’t forget to breathe.”

“ Take a warm epsom bubble bath, pile on the blankets, sip some soup, binge watch/rewatch my favorite shows and not worry about anything that’s not important. It’s hard to put myself first, but some days I have to do it. ;)”

“Having IBD and an ostomy has taught me more than I could ever type into this little box. But I think the most it’s taught me is that I am strong. Stronger than I ever believed I could be. The strength doesn’t also look like what an able bodied person would think, but it’s still strength.”

“Having IBD and an ostomy has taught me so much. The main thing is that I am stronger than I think I am and shouldn’t let anyone tell me any different.”

“Having an ostomy taught me the difference between fear & adventure. It gave me my life back in a time when it wasn’t mine. It taught me that my body can & will handle everything; you just gotta have faith.”

“Having an ostomy has taught me my body can adjust to anything my mind allows it to.”

“That I am a priority!”

“It’s shown my resilience. As the saying goes, you never know how strong you are until you don’t have the choice. “

“Having IBD and an ostomy has taught me that even though I poop in a bag, I’m still a sexy beast ❤️❤️❤️”

“Having IBD has taught me that it’s okay to say no. It’s okay to be tired. It’s okay to say tomorrow.”

If you could tell someone one positive thing about their new diagnosis of IBD, what would it be?

“You get to know yourself and all of the great things you CAN do!”

“Read as much as you can about IBD because not all of the advice you’ll get whether solicited or not will be right for you. And you are your best health advocate! Don’t be afraid of standing up for yourself!”

“I would have to say; ‘You have an answer! This thing you’ve been struggling with has a name. It’s gonna be a continued long road ahead but you will find support!’”

“To hang on and be patient. It eventually gets better and more manageable – the first few years can be challenging to say the least.”

“You’ll find strength you never knew was in you and your challenges will make you more compassionate towards others with illnesses.”

“The people I’ve met and the community I’ve gained because of having IBD. ❤️ So many amazing people!”

“You will be surprised by how resilient you are! Learning to adapt to life with IBD comes with challenges, but you will learn so much about yourself in the process and find that this disease doesn’t define you.”

“For me, it would be, you get to experience life in a different way that makes you appreciate the little things that everyone else takes for granted. Support is everywhere and you realize you’re never alone!”

“You will learn to cherish the good days and appreciate the little things in life.”

“You will never take feeling good and health for granted!”

“I have become more aware that many other people have invisible issues they are working through. It has helped me to be more caring to others that I meet no matter what type of face they are showing to the world.”

“There will be days when it will seem unbearable but you will push through and find within yourself strength and perseverance and resiliency and so many other things you would never have known was in you otherwise! And there will be many, many, many more good days that totally outweigh the bad!”

“Stressful, persistent, annoying”

“Colon’s pissed off…”

“Painful, annoying, misunderstood”

“Debilitating. Scary. Chronic.”

“My angry colon”

“Embarrassing, isolating and unpredictable”

“Sleepy, diarrhea, painful”

“Exhausting, nauseating, painful”

“Never not sick”

“Pain, nausea, bloating”

“Fatigue, pain, anxiety”

“Perseverance, exhaustion, loneliness”

“Not your choice”

“Life altering, warrior”

“It never ends…”

“ Ahhhhhhh always pooping”

“Never give up!”

“Unpredictable, exhausting, expensive.”

“Frustrating, scary, and humbling”

“Tiring, hidden disability.”

Thank you for helping us observe this year’s Crohn’s and Colitis Awareness Week! How should we commemorate it next year? What questions would you ask?

As the sun sets on 2019… My Silent Struggle

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