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Crohn’s Disease and Ulcerative Colitis Awareness Week December 1-7

Crohn’s Disease and Ulcerative Colitis Awareness Week December 1-7

December 1-7 is one week out of the year that is designated to Crohn’s and Colitis Awareness. So, as a voice for building awareness and being an advocate for myself and patients battling this debilitating disease, I wanted to share with you a few facts about these diseases. I know this is not crochet related, but the reason I started crochet was to help cope with my illness and also help pass the time in the hospital when I would be in for months at a time.

Crohn’s disease is a form of inflammatory bowel disease (IBD). It affects the entire gastrointestinal tract and can affect anywhere from the mouth to the anus.

Ulcerative colitis affects the large intestine/colon, and rectum. Symptoms include Inflammation and ulcers, diarrhea, internal bleeding, fatigue, fevers, abdominal pain and cramping, reduced appetite leading to significant weight loss. Complications from this disease and sometimes treatments can be life threatening!

THERE IS NO CURE.

 

Oftentimes serious drugs like chemotherapies and biologics are needed and/or drastic surgeries are necessary to stave off the progression of the disease. Most people who suffer from these diseases can appear “normal” or “healthy” from their outward appearance, but are silently suffering from the inside. Many are among our friends, family, co-workers, community members – millions of people worldwide have some form of IBD!!!!

It is an invisible illness that oftentimes is not discussed in everyday company. Unless you know ME or someone who has Crohn’s disease or ulcerative colitis you may have never heard of these before.

 

Have questions? Want to learn more? Ask me anything-I am an open book when trying to educate about this topic. One thing over the years I have learned is there is no shame battling illness and the stigma surrounding it. I may not look it, but I am battling this disease Every. Single. Day. It affects nearly every aspect of my life. I am not alone. I have so many friends suffering!! I am devastated to say people were lost by complications of this disease.

If we can educate just one person through our journey, through disease, then our suffering is not in vain and there is some purpose in all we have gone through and continue to face. Please, Please take time to learn more this week (and beyond) and understand how devastating Crohn’s disease and ulcerative colitis really is.

Crohn’s disease has impacted every aspect of my life including School, Employment, Relationships (Romantic or Familial), Socially, Financially, and Emotionally.

You can find more information about these inflammatory bowel diseases at CCFA.org

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No Colon, Still Rollin’: World IBD Day

No Colon, Still Rollin’: World IBD Day

**Sensitive Content**

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If I could crochet a colon for myself and anyone else who has lost their intestines due to Crohn’s disease or ulcerative colitis, I would. If only it was that easy. I would stitch until my fingers fell off!! Unfortunately, I would have to crochet for millions of people who sadly have had total proctocolectomy surgery due to the devastation of inflammatory bowel disease. Today, May 19th, is World IBD Day. It is a day to recognize the millions of people worldwide who suffer from these debilitating diseases.

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I crocheted this colon (large intestine) as a symbol of loss. Crohn’s disease claimed my large intestine in 2008, only one week before my 18th birthday. On the very cusp of colon cancer, my disease was extremely progressive and surgery was my only option. The fight never ends because sadly, there is no cure. Ulcerative colitis and Crohn’s disease are the most common types of inflammatory bowel disease. Ulcerative colitis affects only the colon and rectum. Crohn’s disease can affect any part of the digestive tract from mouth to anus.
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This colon represents each major surgery; each stitch stands for each procedure, x-ray, scan, or test that I have undergone. This may seem like an unusual analogy to represent an organ or diseases that most people rarely, if ever, think about. To me, this disease changed my entire life and those changes led me here, crocheting my very own colon, and using my voice and skills to advocate for others who don’t have a platform to help spread awareness. Many of whom are no longer with us. Our diseases may appear invisible, but we are not!

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Silly, strange, serious, or an obnoxiously bold statement, however you view this piece I created, hopefully it will generate conversation for inflammatory bowel diseases. Not just on May 19th, World IBD Day, but every day of every year until we find a cure.

Please *share* this blog post and you may be surprised to find how many people YOU know are silently suffering. There is NO CURE. Help raise more awareness so that I never have to type those words again.

To learn more please visit ccfa.org

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Thank you!
~Nadia

If you are looking to purchase this colon pillow, please follow this link to get it on Etsy!!

(Some of the photos used in this blog post were found on Google.com Image Search)


Shop Red Heart, America's Favorite Yarn

Oh, my hands hurt!

If you crochet as much as I do, there are going to be days that you push those hand and wrist muscles to their limits! Combine that with the fact that I have auto-immune issues including swollen joints from arthritis, there will be days when I wake up and my hands hardly function.

Today is one of those days.

Even typing this blog has forced me to take breaks because the muscle in my hand going into my wrist is causing a lot of discomfort. That discomfort is impairing my ability to do what I love!

Have you experienced something similar? 

From time to time, I switch using a standard crochet hook to using an ergonomic handled hook to alleviate some of the tension and pressure in my wrist. There are points in time where even that doesn’t do enough to help my issue. After talking to my best friend, Nida, about my concerns, she sent me a pair of these fabulous gloves by Copper Joint.

Nida works in the medical field, so I trust her guidance and I decided to give these a try. I wasn’t disappointed. Although my pain can be far beyond the scope of what most things can help, these Copper Joint Gloves have been a crochet life-saver! Today I’ll be wearing them throughout the day as I work on my latest designs.

I know that I’m not alone in this experience, so I ask you, my YARNutopians to share with me your methods of finding relief for your tired and aching joints! Maybe your technique will help others who suffer the laborious tasks of chronic crochet syndrome! 😉


On a serious note, this truly is an issue that many can relate to. I’m looking forward to hearing your suggestions!

You can get the same gloves that Nida gave me by clicking here!

Ostomy Awareness Day 2016

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.

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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.

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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.

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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.

♥ Nadia

To read my personal health blogs follow these links:
Keep your Face to the Sunshine
A Promise of Hope

 

Health Update: A Promise of Hope

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.

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*

Flaws

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.

So many mini squares!

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)

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

Pinky Promise

So when you ask how I am feeling, the truth would be, I feel amazing.

Happy Birthday, Nathan Lyden.

Hand in Hand
“…It’s a blessed thing to love and feel loved in return.” ~E.A. Bucchianeri

~Nadia

Keep Your Face To The Sunshine

As I prepare for yet another surgery, I wanted to reach out to everyone with an update on my current health situation, as well as give a background on my journey through illness thus far. Repeatedly challenged by sickness, I am often left to navigate my way through life around numerous obstacles placed in my way due to complications from Crohn’s disease.

I ask you to read this blog and hopefully you will be able to get a clearer picture of how truly devastating inflammatory bowel diseases such as Crohn’s disease and ulcerative colitis can be. My hope is that once this ordeal is behind me, I can hit the ground running (or at least walking) into 2016. My goal is to get through an entire year without having major surgery or complications. My real hope is that we find the CURE.

Health Challenges Ahead

For the past eight years, I have been struggling with my health. Some of you who follow my page have known about a few of my struggles; others may be new to learning that I have a very severe and complex case of Crohn’s disease. Every doctor I have ever encountered has termed me everything from an “anomaly,” to “complicated,” to “a nightmare.” It has been extremely difficult to walk this journey and try to maintain some normalcy in my life when nothing is “normal” with my health.

When I was 17 years old, I was so sick, and on the cusp of colon cancer, when the doctors decided to remove my entire large intestine and rectum. I underwent a total-proctocolectomy and was given a temporary loop ileostomy and an internal ileo J-pouch.

An ileostomy is when the small intestine is brought through the abdominal wall and waste is diverted to the outside of the body. This continence diversion allows for a person to expel body waste into an ostomy appliance on the outside of the body.

A J-pouch is an internal pouch using a portion of the small intestine made to take the place of the rectum and can be used to expel waste similar to any other person (minus the correct anatomy). My J-pouch was connected to a small part of my anal cuff left behind during surgery and left to heal.

Hospital
Continued Obstacles

I lived with my ileostomy for four months then had it reversed. Physically, I looked “normal” from the outside, other than the abdominal scars I had from surgery. Doctors opened my bottom and the concept was that the J-pouch would emulate a “mock rectum” and function as an internal reservoir for waste out of which I would be able to go to the bathroom somewhat “normally.”  However, I wasn’t so lucky.

In the entire time I had my J-pouch, I went into what essentially would be considered “failure” and was terribly ill for the 20 month duration I had it. My surgeon was trying hard to save the reconstructed organ because he was trying to take my youth into consideration. He was working hard to avoid giving me a permanent ileostomy.

So, I underwent another surgery to go back to a temporary ileostomy in hopes of saving all the reconstructive internal surgery I had done and save my J-pouch. It was not successful.

After 10 months, I underwent testing to see if this extreme procedure would work, but the doctors determined that there was a lack of blood supply flowing to the J-pouch and my disease had attacked everything. There was really no chance to save the tissue and intestine.

The doctors then made the decision that my best case scenario would be to remove the diseased intestine, remove the J-pouch and give me a permanent ileostomy. I was 20 years old.

It Takes a Toll

It is difficult to describe to someone how it feels to constantly have your life interrupted by illness. Although I have incredible family support, it has been a difficult journey to take as I watched my brothers and my friends move on to college when my six attempts at college were detoured by illness, to the point where I just gave up trying. I watched them move out on their own, get married, work a job outside the home, and move forward in life.

For me, it seemed that for each step I took forward this illness tried it’s best to push me two steps backward. I fought back EVERY step of the way. I have tried a myriad of medications, holistic healing, naturopathy, homeopathic, and dietary measures to help myself. If you can think of it, I most likely have tried whatever method to stave off this disease. Up until recently, (as I now am preparing for another surgery and have been taken off of several of my meds in preparation) I was/am taking chemotherapy drugs, biologic drugs, probiotics by the bottle-full, vitamins, dietary supplements, and numerous other medications to sustain my life and existence as best as I can.

Even if from all outward appearance I look “normal,” the crazy thing about this disease is that it is invisible from the outside. I guarantee if you saw me from the inside, you would know how truly devastating this disease really is. I feel that over the years and after numerous surgeries, I have been pieced back together, that all my mismatched parts have been stitched back like an old rag-doll that has seen too many days of wear and tear.

Since my initial series of life changing surgeries, I’ve had to undergo many more as I sacrificed more and more of my intestine to this monster. Last summer, I had another 30 centimeters of intestine removed, and because of a prolapse to my ileostomy, I had my ileostomy moved from my right side to my left side.

Shortly after surgery, I began to experience incredible pain around my new ileostomy. After numerous tests, the doctors found a subcutaneous leak where feces were seeping into my abdomen. Upon further testing, they also found a large abscess at the surgical site in my abdomen. Another major surgery was performed to open me back up. It was so bad; they could not close my abdomen. They left the incision open and I underwent what is known as “healing by secondary intention.” I was put on a woundVAC machine, and my wounds were packed and treated until they healed. I spent more than a month hospitalized and another six weeks with home healthcare nurses taking care of me with the additional help of my parents.

The Journey Continues

Fast forward to this year, and I still have not had much luck conquering this disease. I have yet to get through a year without major surgery or to even have lengthy respite from being in the hospital. Even this year I have been hospitalized five times since January 2015.

Earlier this fall, I started to experience incredible pain in my lower abdomen. Several days had passed, and the pain increased. I had been home alone caring for my nephew when I knew there was a bigger issue than just typical Crohn’s pain. I called my parents, who were out in New York visiting my brother. My parents cut their trip short, left NY, and raced back home.

Upon arrival my mom rushed me to the ER. I was immediately admitted inpatient with an abscess. The problem was that the abscess had formed in my lower abdomen where my anal cuff had been left behind from my permanent ileostomy surgery, and they sewed up my bottom. The mucosa produced from the tissue, along with bacteria, had caused a critical situation, making conditions ready for this disaster to happen. The abscess was located in a very vascular area and was affecting other organs.

The decision was made to transport me to another hospital more equipped to handle the level of care I needed. I was taken by ambulance, and by the time I arrived at the other hospital I had gone septic. I ended up in the ICU for several days and had to undergo emergency surgery to place drainage pumps to get the infection from my abdomen out. It was a terrible ordeal, and it is remarkable that I even recovered from being that sick.

After a week in the hospital, I was discharged with the pump, drains, and tubes still inside of me. As long as my mom could care for my apparatus at home, I could continue treatment from home. So I went, happy as a clam to get out of the place I so ungraciously refer to as “The Joint.”

However, this doesn’t end here. This is the reason for the inspiration for this blog post. I had the drainage system in a little over two weeks until the doctors were able to remove them. Unfortunately, this could be a reoccurring problem, and they said I may not survive another episode if the abscesses come back. In order to prevent that from happening, I need to have the entire area removed. This will entail the complete removal of the anal area, the muscle surrounding it, the internal area where the disease is showing, and any of the area where abscesses may form.

At this time, there is no way to know how deep it will be or how much will need to be taken out. The best case scenario would be about a three inch diameter section of my bottom, but internally I am not sure. Needless to say, I am extraordinarily frightened.

Actually, that doesn’t even come close to explaining how I feel as this disease continues to ravage my 25-year-old body and continues to claim one piece at a time. From diseased intestines, surgeries, hospitalizations, blood clots, infusions, transfusions, PICC lines, infections, and a number of other challenges, this disease has truly tested every bit of physical and mental strength I possess and it continues to do so. Fear does not own me, but I can honestly say it is ever present through this journey.

I was told the recovery time is six to eight weeks for this type of surgery. Each one of these surgeries makes my situation even graver and more challenging for an already challenged body. There are moments when I feel like screaming out in rage and beg for an answer to the question “WHY?” Other times, I feel like I just want to embrace life and celebrate EVERY. SINGLE. MOMENT. that I can. I choose the latter most often.

Hospital

You Give Me Strength and Purpose

My surgery is scheduled for December 9th, 2015. I was able to obtain medical clearance from my doctors to travel to New York City for a few days before surgery to visit my brother, and I am really looking forward to that trip. I feel like having that to look forward will help keep my mind off the obvious event of surgery looming in front of me. Each moment to add good memories to my life canvas makes all the difference in the world! I am so eternally grateful for the many gifts in my life. I owe all to Allah, my family, Nate, my friends, my IBD family (Crohn’s and colitis patients and doctors), and you, my crochet family who keep me fighting when I feel weak.

I have shared with you before how much I value crochet. I have told you how crochet saved me, but you may not know what you have done for me every day that you showed up to watch my videos and work on my projects. You gave me purpose in an otherwise difficult time when I wasn’t sure of my value. You gave me reason to keep working, creating, and teaching. That is more valuable to me than all the medicine in the world. When I say, “I wish I could hug each and every one of you,” I truly mean it. Thank you so much for the contribution YOU have made to my life. Sometimes people say that I have impacted their life, well; it goes both ways. You have truly impacted so much of my life.

I will be taking time off from filming, but have managed to film a few nice videos ahead of time, to be released during my surgery and recovery. I hope to make a full recovery and get back to crochet and creating in no time! Please continue to share your work. I promise to keep checking back to see what progress everyone has made. As soon as I am able, I will be back, ready to hook my way into action!

Thank you for your patience and your continued support. There are no words that can express my honest gratitude.

“Keep your face to the sunshine and you will not see the shadows.” ~Helen Keller

Love and *Soft Yarn Hugs,*

Your crochet instructor,
Nadia Fuad

If you would like to learn more about Crohn’s disease and ulcerative colitis, please visit the Crohn’s and Colitis Foundation of America’s website at www.ccfa.org