When I was diagnosed, it wasn’t clear right away whether I had ulcerative colitis or Crohn’s disease. My disease was so progressive, and I was so sick, that each treatment was like grabbing straws in the hopes that something worked. I prayed to avoid surgery, I prayed to survive.
On the cusp of colon cancer and failing treatment, there was no way to avoid the inevitable. Surgery was the only choice. Well, surgery or quite possibly death. But I was 17 years old and the idea of losing my colon was terrifying. I remember the team of doctors-specialists, surgeons, students, all filing into my hospital room to deliver the news.
I remember my surgeon drawing a picture with a black pen on white paper. “We will cut here, remove this, and make an opening there, create an ostomy out of that…” each scribble demonstrating what he planned to do to me. It was all so abstract and unreal. It was like I was that paper person and it was as simple as drawing a cut across my tummy and pulling my intestine through my abdomen. JUST. LIKE. THAT. But I am flesh and blood and not a series of sketches on paper.
All I knew is that my life would forever be changed. Illness changes everything, losing my colon was collateral damage that this disease was leaving in its path. It was killing me from the inside, and if my colon wasn’t removed, then there was not much hope for a future. I prayed to just survive.
Go ahead then, take it out.
Surgery was scheduled, my Living Will intentions were made, I signed the papers and cried when they wheeled me away from my parents, holding my mom’s hand until I couldn’t anymore. Until I had to let go… It’s so hard to describe that fear of the unknown. I was sick. Not just sick but deathly ill. If this was my chance at survival, would I really survive? I prayed to live through surgery. I prayed to survive.
I survived the surgery, but I was left with a body that was so unrecognizable to me. Cuts across my abdomen, part of my intestine on the outside, an abnormal anatomy that was hard to comprehend when I was just a teenager. Actually, no matter how old you are, this is something so incomprehensible. Who goes to the bathroom in a bag? Who lives this way? How do I live my life going forward? I am just a kid. Why me? The litany of unending questions each one more palpable than the last. I prayed to survive. Now how do I do that?
That was 10 years and more than a dozen surgeries ago. That was 10 years and more than 100 hospital stays ago. That was 10 years and 1,000 procedures ago. That was 10 years and a lifetime ago. I will never forget that scared young girl. Now, 10 years later, although I am still in a battle with this disease that has finally been diagnosed as Crohn’s disease, I am stronger and I am a survivor. Today, I live with a permanent ileostomy and a permanent positive attitude. I survived. 10 years. I survived.
This is the surgeon who performed my first surgery
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 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?!
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.
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.
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.
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
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.
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.
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