Beyond the bag - living with stoma pride

in GEMS3 months ago

In life, there are tough decisions, especially when they affect how you feel about yourself. Many struggle with body acceptance, from weight to imperfections like wrinkles. Some turn to cosmetic surgery for help.
But what if you don't have the option of cosmetic corrections and are forced to live with something that will affect your self-image for the rest of your life?

You might not realize how many people live with a small bag under their shirt, still living fully. Some aren't aware or don't care, finding it gross. But for many sick people, a stoma is the only choice.
If this topic doesn't interest you, feel free to stop reading. But for those curious, I appreciate you reading on. Facing the truth, even the uncomfortable parts of life, is important. Life isn't always perfect.

We all poop, right? But, certain people in a slightly different way than we are used to.

Let me explain what a stoma is. A stoma is an opening in the abdominal wall that can be connected to our digestive or urinary system. This enables waste (urine or feces) to be removed from the body in case of illness, injury, or congenital defect. It looks like a small, pink bag sewn onto the body. It can lie fairly flat against the body or stick out. The stoma has no nerve endings, so it is insensitive. Through these surgically created openings, urine or feces are excreted from the body in an "unnatural" way. Since stomas have no muscles, urine and feces are released uncontrollably.

F3B6328C-C80C-42AA-A83B-B258428B6AE3.jpeg

5AFEF100-D03A-49D1-9020-F098E976EBB7.jpeg

We know several types of stomas, depending on their purpose of supporting our health - respiratory, nutritional and excretory.

Excretory stoma is necessary in severe chronic inflammatory bowel diseases, such as ulcerative colitis, Crohn's disease (which I have myself), polyps, cancerous diseases of the rectum, intestines, bladder, various injuries, congenital diseases, and so on.

My purpose is to present to you excretory stomas. These are special openings in the abdomen that help with excretion, or getting rid of waste from the body. Excretory stomas come in three types: colostomy, ileostomy, and urostomy.

Colostomy is when doctors create a new path for thick stool to leave the body by diverting the large intestine through an opening in the abdominal wall.

Ileostomy is similar, but it's for liquid stool. Doctors make a new path from the small intestine for the liquid stool to exit through the abdomen.

Urostomy is when urine needs a new way out because the bladder is removed. Doctors make a path for urine to leave through the ureters, often using a part of the intestine to replace the bladder.

In the beginning, it might feel overwhelming to figure out how to manage a stoma. Learning to change and empty the bag, and taking care of the skin around the stoma, is important.

You need to keep the skin around the stoma clean and dry, and make sure the bag fits well. The hole in the bag should be the right size. How often you change the bag depends on your habits and the type of bag you use. It's usually best to change it when it's about one third to half full, or if it starts to feel uncomfortable.

7A84C3FF-0C6B-4915-8B49-F658AC04279F.jpeg

5466B2F9-EE17-4C52-A125-1DC55110F4B8.jpeg

AECD9B6F-FA35-4AD1-82FD-704E43019C86.jpeg

When cleaning the skin near the stoma, lukewarm water and soft cloths work well. You can also shower and use mild soaps without the bag on, just be sure to rinse the soap off thoroughly.

When you're out and about, it's good to have everything you need to clean and change the bag in case of unexpected situations.

This is just a quick overview. I could go into more detail, but I wanted to give you a basic understanding. Sadly, talking about stoma is still a big taboo, and people often feel uncomfortable discussing it.

995E8815-E103-46F2-8986-8F70BCA61BAA.jpeg

D9A68288-7B1D-4203-8918-58179435AE55.jpeg

There is some reason behind this article. I already mentioned that my brother has a stoma and that I work with patients where I need to change stoma every day, so for me, this is normal.

But some time ago, I had unbearable pain again, and after an examination by a gastroenterologist, the doctor hinted that an operation to remove the inflamed part of the intestine would probably no longer be possible, because Crohn's has started to spread a lot and a large part of the intestine is already inflamed. If the drugs don't help and the side effects start to appear even worse than they already are, it might be wise for me to start thinking in the direction of getting a stoma.

I don't know how to even describe the feelings that began to surround me at that moment, the doctor's words echoed in my head, and for a moment I was in such a shock that I couldn't even answer.

Living with Crohn's disease can be a rollercoaster of uncertainty. Some days, it feels like I'm constantly battling my own body, unsure of what the next flare-up will bring. The thought of possibly needing a stoma in the future looms over me like a shadow, but I refuse to let it overshadow the beauty of life itself. I cling to positivity like a lifeline, reminding myself that life is still beautiful, that it still holds meaning beyond the pain and the fear. Each day, I find strength in small victories and moments of joy, knowing that even with big challenges, there is still so much to be grateful for. I hold onto hope, believing that whatever the future holds, I will face it with courage and resilience, because life is worth fighting for, even in the face of uncertainty.

So, I just want to remind you all that we're all beautiful, with flaws and all. It's important to accept everyone because we never know the battles they're fighting or the challenges they're overcoming. Together, with support from friends or even strangers, we can make a big difference in someone's life. Let's spread kindness and acceptance wherever we go.

FC17C2F8-63EC-4678-92C3-0BAB9E821A30.jpeg

“Sometimes you will be in control of your illness and other times you’ll sink into despair, and that’s OK! Freak out, forgive yourself, and try again tomorrow.” — Kelly Hemingway

With love, @tinabrezpike ❤️

Sort:  

❤️

Hi Tina
I just got back to Hive a few days ago after a while away. It's so good to see you are here and posting but I am sorry to read this post and what may lay ahead for you. Having been blessed to have known you for a few years now - One thing I do know about you is that if anyone can face a challenge with understanding and grace - it is YOU!
My beautiful peace warrior! I wish only the best for you - always. xxxx

Hey @sallybeth23, it's great to hear from you again. I've been away for a while too. It's been a tough year, but I'm back now, and it's lovely to see that you are too. Your kind words and positivity always brighten my day. You're awesome, and I appreciate it ❤️ Sending lots of kisses from rainy Austria ❤️I bet the weather is much nicer where you are ☺️