Annually, the first Saturday in October marks a day of recognition for ostomates. Ostomy Awareness Day is a day to shed more light on this life saving surgery. I take this opportunity to try and educate others about this surgery which saved my life.
What is an ostomy?
An ostomy is a surgically created opening in the intestine. The intestine is then brought through the abdominal wall to form a stoma through which waste passes into an appliance on the outside of the abdomen.
No one really knows the exact number of ostomates worldwide – estimates range from 450,000-1 million people. Many, like myself are surviving and thriving because of this life saving surgery. We would not be here without this. Ostomy surgery is often the last resort after exhausting and failing every other treatment option.
Why do people get ostomy surgery?
Cancers, inflammatory bowel disease, spina bifida, perforations, trauma, accidents, gunshots, neurogenic issues, diverticulitis and several other reasons can lead to why a patient is LIVING with an ostomy. Some patients have temporary ostomies while others, like myself, live life with a permanent ileostomy.
What are some myths about ostomies?
Unless people are educated about this, the stigma exists for misconceptions and misunderstanding to form. Common myths about ostomates are:
We smell
We always have to wear baggy clothes to hide our appliance
We can’t participate in sports or be physically active
An ostomy is a death sentence
Only elderly people have ostomies
Speaking for myself, as someone who had her first ostomy surgery at 17 years old, I am LIVING proof that these are myths. My Crohn’s disease was so progressive as a teenager that I would not have survived without having my colon removed and been given an ileostomy. On the cusp of colon cancer, my alternative was to live with this surgery and try to get my life back from the grip of a horrible disease. Things are not always easy and my road to acceptance has been rough at times, but rest assured that I do not smell. I love fashion and wear a wide variety of clothing. I was never athletic, but that isn’t because I have an ostomy, it’s because I am a klutz. Ostomy surgery saved me from an absolute death sentence. ANYONE, no matter what age, can have ostomy surgery.
I hope this helps provide some information about something that I, and so many others, live with each and every day. Thank you for the opportunity to educate and advocate on this Ostomy Awareness Day 2016 and for taking the time to read this blog and help the awareness grow!!
Without this surgery I would not be here to share my love for crochet with the world.
Today, May 19th, is World IBD Day. More than 5 million people across the globe suffer – often in silence – from inflammatory bowel diseases including Crohn’s disease and ulcerative colitis. I, Nadia, am one of those 5 million people, and those that know me know I will not stay silent. As long as I have a voice or platform, I will use it to help build awareness and rally for so many who continue to suffer or are no longer with us because complications from these devastating diseases have claimed their lives. Some of my closest friends have lost their fight and yet there are still people who have never even heard of IBD! How is this even possible?!
I have VERY progressive Crohn’s disease. I was wrongly diagnosed at the age of 16 which sent my life on a hellish journey against this overwhelming monster.
Crohn’s disease is a VERY serious chronic auto-immune disease causing inflammation, bleeding, swelling, and ulcerations in the entire gastrointestinal tract. There is NO cure. I have undergone life altering surgeries to remove my entire large intestine, parts of my small intestine, my rectum, and now, I live with a permanent ileostomy as a result of the destruction this disease has wreaked on my body.
When most people look at me the most common response I get is, “but you don’t look sick.” I shouldn’t have to bear my scars to prove that I am. I have suffered through countless hospital stays, surgeries, complications, and infections. I have been the subject of multiple studies and treatments in a quest to get this illness into remission. Presently, I am taking a potent biologic drug recently approved for the treatment of Crohn’s disease, and it has shown great promise. For the first time in 8 years, I have been out of the hospital for over 140 consecutive days and am enjoying every ounce of my life that I can.
When one lives with chronic illness we become savvy at hiding our pain. Some suffer completely in silence behind a mask that hides how terribly ill they truly are. Today, on World IBD Day, and on every day we cry out for recognition – to stop patronizing attitudes of “but you don’t look sick.” Tell me, how is sick supposed to look? To stop having IBD labeled as a ‘bathroom disease.’ To end misconceptions like if you ‘change your diet or avoid stress, everything will be alright.’ To minimize the ridiculous ad campaigns that exist further stigmatizing this illness. Today, we continue to educate, support, and build awareness so that one day a cure will exist for Crohn’s disease and ulcerative colitis and no more lives are lost. One life gone is too many. This is just a small part of the truth behind IBD.
To EVERYONE reading my post, I implore you to educate yourself and make Crohn’s disease and ulcerative colitis a household name. Talk about IBD so you can educate others through this example. Surprisingly, once you open the door to conversation, you will find others who are also there fighting a battle of their own. Please spread the word.
This blog is the first part of my birthday gift to you, Nate.
As I start this blog I have to admit that, surprisingly, it is one of the hardest pieces I am writing for a couple of reasons. I have backspaced and deleted enough to the point where, if I were writing in the 1970s, my trashcan would be over flowing with crumpled paper that I keep pulling out of my ancient typewriter. Good thing it is 2016, and several trees are being saved from my inability to focus on how I want to put these thoughts into words.
Gravity
Part of the reason I am having trouble with this blog is because it was the object behind a bit of a disagreement between Nate and me. It was nothing major, just a misunderstanding. I can be feisty and stubborn, but being ill has taught me enough about what is important and what matters, so arguments and fights with anyone are few and far between. So, no worries please.
Secondly, I am hesitant on writing this because, usually, when things go up, they must come down, and that has been my typical health pattern for nearly nine years. I have learned that a lot of things are temporary. As I continue to write about some of the positive things that have been happening with my health, in the back of my mind there is a whisper reminding me of Newton’s Universal Law of Gravity. That pesky law keeps me from getting too comfortable with the status quo. But tonight I am going to ignore that stinking voice so I can write in peace.
Barbie Butt
I had surgery on December 9th, 2015 following a very scary episode of sepsis which landed me in the critical care unit for nearly a week. You can read my last health update here. The surgery was scheduled in hopes to offer me a better chance at not repeating history of sepsis in that area as the risk was so high. All of my physicians concurred that I may not be so lucky ‘next time,’ so I had a removal of my rectal/anal cuff and the surgeons closed my bottom. Essentially I was given what they call a ‘Barbie Butt.’ You can laugh. It’s OK. It’s the truth, and God help us all, we NEED humor. I am 25-years-old and have managed to survive some of the most painfully undignified, frightening, and major health hurdles to end up with this Barbie Butt. Believe me, laughter has helped me so much it’s not even funny…or it is…but it’s not. (You know what I mean!) Without humor I wouldn’t have survived; I promise you that. Having this surgery is better than the alternative. So, I laugh in the face of this *bleep* disease that keeps coming at me. “Go ahead Crohn’s disease, Take my a-hole. I didn’t need it anyway!”
Following surgery, I ended up back in the hospital with another abscess and sepsis scare, but it was minor and with a strong dose of antibiotics, I recovered and was home in time for the holidays. That was crucial because I was about to launch the 365 Days of Granny Squares blog in the New Year. Here I was, sitting in the hospital, trying to figure out if I could orchestrate this project from my hospital bed so it would be ready to go by January 1st. I got lucky. I got to come home. 365 Days of Granny Squares went off without a hitch. Today, it has officially been an entire three months that I have not been hospitalized, and to be honest, that is a near record. The granny squares are helping me keep count! Haha!
The struggle is real
Although it hasn’t been easy, and finding an effective treatment plan for my Crohn’s disease has been like playing roulette, things are beginning to look up.
I struggled for the entire month of January trying to recover my strength. By February, I felt stronger but didn’t feel fully better. I started a new drug treatment six weeks ago that offers a lot of promise. Other than being bothered by a few side effects and minor setbacks, I am hopeful as I have seen some mild improvements *knock on wood*. I have tried so many new drugs and treatments, diets and health regimens, that I started to lose hope after failing so many times, but this time I have to hold on to hope. This time is different. It’s different because there is someone else in my picture besides myself, my friends, and my family. It’s Nate.
He’s my person
Remember that argument I mentioned we had earlier? Yeah, well, it was because I put him on the spot barraging him with questions about all this health stuff the other night with that not-so-pleasant side of my personality that demands answers about handling life with a sick person. I was probably having a tiny pity-party. There were tears, but I’m over it. Sometimes, in those fleeting, not-so-pretty moments, I feel unlovable, ugly, and scarred from a dozen surgeries and having an ostomy, all THIS worry comes out and gets overwhelming. It is overwhelming living with a terrible disease, so walking into this life by choice and choosing to love someone with these circumstances on their plate is HUGE. It’s a risk, and he did it. He did it for me. He told me I am worth the risk. Me! *insert a million feels here*
Presently, I am surrounded by several skeins of yarn and 600 tiny square crocheted pixels for a project I am making for Nate’s birthday gift.
I’m not thinking about the ugly side of this disease but about how lucky I am to have that love. For the first time in three months since surgery, I don’t just feel good, but I feel amazing! It has nothing to do with medication, doctors, good lab results, or clinic visits. It has to do with someone who Googled Crohn’s disease so many months ago and spent time reading all about it trying to learn what he could, so he could better understand this disease and what he would be facing with me. I feel amazing because Nate says I “fight like a champ” and I am the strongest person he knows, and guess what? I believe him. I feel amazing because, when he looks at me, he doesn’t see all those scars or my ostomy, and that I feel “broken.” He just sees me. Nadia. The girl I always wanted to be before my body was attacked by this disease.
Fighting like a champ (Surgery 2015)
The future’s so bright, I gotta wear shades
There are a lot of things in life that aren’t fair. Nothing is remotely pretty when fighting against sickness. Chronic illness has taught me how unpredictable life can be. I wish I had that magic crystal ball to see the future, so I could know what is coming, but I don’t. I can recite to you my dream of what I would want to see, if the universe lined up just right to grant me that future. It’s a beautiful private dream. But it is exactly that – just a dream.
One thing I have learned is that I can’t control any of this disease, and the universe has a plan of its own. However, despite all these trials, I have been given this perfectly imperfect life that looks nothing like a perfect dream, and that is OK. Illness was the reason I started to crochet. That led me to create YARNutopia and introduced me to this wonderful crochet community. It has brought me lifelong friendships. It taught me the value of what is truly important, and finally, it navigated my life to cross paths with an extraordinary man who is willing to face that frightening, unknown future by my side. He gave me a pinky promise. That is a promise of HOPE. There are no words that exist to thank someone for a gift that extraordinary. Maybe these undeleted, uncrumpled words can help.
Pinky Promise
So when you ask how I am feeling, the truth would be, I feel amazing.
Happy Birthday, Nathan Lyden.
“…It’s a blessed thing to love and feel loved in return.” ~E.A. Bucchianeri
