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Community Voices

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

1 person is talking about this

Coping With a Colostomy for Colorectal Cancer -- It's Going to Be OK

by Jo Phillips What does it mean to have a stoma? You might get a hundred different answers to that question. What it means to me is being part of something bigger and more important. Why you might ask? Because being diagnosed with rectal cancer at age 38 is a bit of a mind-bender. The first equation I had to figure out was: Mental health + cancer = ? As if that wasn’t hard enough to reconcile in my mind, the news that I would need a colostomy bag was unthinkable! At first, it was a coin flip as to whether it would be temporary or permanent. But after intense radiation had failed to shrink the tumor, I was told there was no chance of having reversal surgery if I wanted the best chances of survival. There are so many emotions in the run-up to ostomy surgery. The main one being Terror, with a capital T. My mum actually said she’d get a colostomy with me. Suffice it to say that has yet to happen! My fiancé Jay told me he’d be right there with me every step of the way and that we were gonna make it through this, together. However, the most memorable moment was when my sister-in-law Lesley told me that I’d “own it” and I would face it head-on as I did with every other challenge in my life. She said I was going to be more than OK. How did she know that? Through the tears, I nodded in agreement and murmured she was probably right (I was a really good liar it seemed). Inside I laughed and thought no way was that going to happen. It was me facing life-changing surgery, not her. I seriously considered not having the surgery. Sure, I’d take my chances with cancer — anything was better than getting a colostomy! Yet that was the stark reality. The fact was, part of my intestine was going to poke out of me (what?!) and I was going to poo into a bag from a hole in my belly (WHAT?!). This was not going to go well, no way, nuh-uh… So here I am nine months later. A pro at my own stoma care and loving the sense of community and camaraderie I get from being an ostomate. Yes, I bloomin’ love it! I also love little ButtFace (what I unaffectionately nicknamed my stoma). That name was meant as an insult, but now it’s a term of endearment and a seemingly infinite source of giggling-pleasure for me and my family. Lesley was spot-on once again (ain’t those kind of people annoying?) I do own it! Lately, I’ve found myself feeling more and more grateful for my new little extra appendage, for without it, I wouldn’t be writing this. And I think I may have reconciled that original equation. Yes, there’s an incurable cancer diagnosis, but with a new sense of purpose having a stoma (and a loud voice), I think I’m going to cope OK. If I have helped even one person on their ostomy journey, I’m satisfied. I’ve made something of my life and at last, there’s meaning.

Community Voices

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

1 person is talking about this
Community Voices

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

3 people are talking about this
Community Voices

Happy World #Ostomy Day

<p>Happy World <a class="tm-topic-link ugc-topic" title="ostomy" href="/topic/ostomy/" data-id="5b23cea600553f33fe9996d7" data-name="ostomy" aria-label="hashtag ostomy">#Ostomy</a>  Day</p>
Community Voices

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

2 people are talking about this
Community Voices

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

<p>My Kids Have Some Encouragement And Advice As You All Begin A New Week</p>
6 people are talking about this
Maggie Goodman

6 Famous People Who Have Ostomies

Having an ostomy isn’t the end of the world as some may think. In fact, it’s a new beginning. You can still do the same things you’ve done before, the only difference is that your “plumbing is rearranged.” There are famous people who lived or still live with an ileostomy or colostomy due to Crohn’s, ulcerative colitis, birth defect, an injury, colon cancer or other reasons. It can be permanent, when an organ has to be removed, or temporary, when the organ needs to heal. Here are some famous people you may not know about who didn’t let a stoma get in the way of accomplishing their goals: 1. Marvin Bush The youngest son of former U.S. president George H. W. Bush. He was diagnosed with UC when he was 28 years old and was worsening, even taking medication. In 1987 he had his entire colon removed due to losing weight and bleeding internally. 2.  Napoleon Bonaparte A military general who became the first emperor of France. He was also a military commander fighting in Italy. There was a rumor that the reason he had his hand in his coat was that he was holding a goat’s bladder as a rudimentary colostomy bag. The autopsy showed that he died from stomach cancer. 3. Barbara Barrie An American actress of film, stage, and TV as well as an accomplished author. In 1994, she underwent a colostomy after receiving a diagnosis of colorectal cancer. She also wrote a memoir, “Second Act: Life After Colostomy and Other Adventures,” about her experience. 4. Rolf Benirschke A former American football player in the National Football League. At the age of 24, he was diagnosed with UC and required to have life-saving ileostomy surgery. He was able to return to playing football for seven more seasons.  He is the national spokesman for the CCFA. 5. Fred Astaire An American singer, dancer, and actor who worked in music, vaudeville, TV, radio, comedy, and Hollywood musicals.  He received the Life Achievement Award from the American Film Institute in 1981 and awarded an honorary Academy Award for his contributions to film in 1950. He was a famous ostomate. 6. Al Geiberger An American former professional golfer who won more than 10 times on the PGA Tour, including a major championship.  In 1980, he had surgery to remove his colon due to IBD and has an ileostomy. “Anything worth achieving will always have obstacles in the way and you’ve got to have that drive and determination to overcome those obstacles en route to whatever it is that you want to accomplish.” –Chuck Norris

Community Voices

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

8 people are talking about this
Community Voices

Never give up

<p>Never give up</p>
5 people are talking about this