It’s been quite a while since I have last written an update both regarding my health and also Nasir’s diagnosis of autism. As far as my health goes, I feel I’m in the best place I have been in years. I have occasional setbacks, but over-all I have been feeling very good. I’ve been following up with doctors, continuing my biologic medication, and trying to practice a healthier lifestyle. I have been going to the fitness center several days a week. The gym is two-fold. One, for my physical and mental health, and secondly for Nasir. He is socializing with his peers more and more, and the gym’s childcare services provide an opportunity for him to do just that.
Where we started
Since I last blogged about this, we were in the middle of a whirlwind of overwhelming hits coming at us from every direction. Nas wasn’t meeting his appropriate age mile markers. I was battling my own health issues with my Crohn’s disease and mental health, the most difficult being post-partum depression and anxiety. You can read more here.
Soon after the doctors told us Nasir was on the Autism Spectrum, we were thrust into a new normal of therapies of all kinds. Speech, behavioral, occupational, and more. Nasir was nearly two years old and other than making some babble sounds, he didn’t say actual words, mimic our sounds, answer or respond to his name, he wouldn’t make eye contact often, he played independently from other children (other kids didn’t interest him much), he obsessively watched or paid attention to only certain things like specific TV shows that he watched over and over. We would discount or rationalize them, or chalk it up to other things – “maybe it’s his hearing” or “he was born a little early, he’s just a little delayed.”
What came next
Getting the diagnosis of ASD was bittersweet for our family. It’s one of the most overwhelming things to process, but we also have a solid reason for the why’s we were experiencing. We could finally move forward with all the wonderful resources our community has to offer.
Where we are now
Nasir is in therapy nearly every day. He is now talking non-stop. He has lots to talk about and share. He has big opinions and now that he has discovered his voice, he is eager to discover new words, things and experiences. He loves adventure, to play, and to build. He swims and loves the park. He has friends and learns a lot from parallel play. He recently started dancing and his love of music has always been strong. Magna-tiles have opened up his imagination, and he is a master at building castles. He sings, counts, says the alphabet, and identifies so many objects we see throughout the day. He loves his family. Mama and Daddy are his favorite people followed by his grandparents, all his aunties, uncles, cousins and his amazing therapists. He loves reading books, and presently, The Mickey Mouse Clubhouse is his favorite TV show. (We shout “OH TOODLES” a dozen times a day!)
We have come SO FAR in a just under a year. The therapies have provided Nate and I small windows in our day to have a break. Despite Nasir’s achievements, he is still demonstrating behavior that do not allow us many moments for breaks. He’s still a wild toddler, of course, but he also never sits still, his attention span is very short. We are having less meltdowns, but they still occur daily. My entire life is devoted to this sweet boy and facing all the challenges that come our way.
When I do get a chance, I’m trying to get back into my crochet. I feel that spark coming back. I feel several sparks returning. I’m beginning to feel more like myself. Therapy has helped – my own therapy. It’s been life-changing. Little by little, I have been able to piece myself back together. I’m stronger than I have been in a long time. I can do hard things, and I’m doing them every day. If Nas is doing hard things, then I need to continue to set an example and do the same. We continue to take baby steps toward doing more crochet projects and hopefully soon, things will be back into full-swing.
I am currently working on one crochet project per month, and I have a goal of doing 3 to 4 projects per month like I used to do. At the time of creating this blog post, I am anticipating planning out our Halloween costumes for the family this year. You know we have to go all out like every year! Can’t wait to share what we have up our sleeve in 2022!
In observance of Crohn’s and Colitis Awareness Week (December 1-7), I wanted to share a little bit about my story to help anyone who is unsure how devastating these diseases can be, and to help everyone learn more so they might better understand their impact on a person who lives with this every. single. day.
I have had more than a dozen major surgeries and thousands of medical procedures that require me to be biopsied, explored, cut, stitched, stapled, and pieced back together. This disease has affected every part of my body. I have spent years of my life hospitalized trying to fight this disease. I have lost my large intestine, parts of my small intestine, my rectum, my anus, and a few other parts of my anatomy, forcing me to live with a permanent ileostomy. What is an ostomy you might ask? An ostomy is when part of the intestine is pulled through the abdomen wall allowing waste to empy into an ostomy appliance or bag on the outside of the body.
Although my ostomy saved my life, it also destroyed parts of my self esteem, it caused an enormous amount of anxiety, and oftentimes, depression. As much as I’d rather focus on the positives, one bad day, week, or month can pull you right back into the abyss of some pretty heavy feelings. Thankfully, there are now more good days than bad and without my ostomy, I would not be here as a daughter, a sister, a wife, a mother, a niece, a cousin, an auntie, a crochet teacher, a friend and an advocate.
I remember the days when I wanted to just give up. When I sobbed and hurt; when I begged for Allah to have mercy on me and let me just find relief. I remember the days after surgery when I had to relearn to sit-up, to walk, go to the bathroom in a new way, to take care of all my wounds, to treat all the infections, to fight my way through sepsis, infusions, experimental treatments, failed medications, hearing the good news and the bad, the numerous doctors and labs, the constant feelings of being scared, the bag leaks and the humiliation of being covered in poop in
a public place, and ALL. THAT. PAIN.
This disease has not been kind to me, nor has it been kind to the 5 million people around the world who suffer every day from Crohn’s disease or ulcerative colitis. Every year, I pray and fight and campaign and rally for a cure. Each year passes and although it feels closer, it still feels so far away.
This illness is just part of my story. Even if it has dominated my life for more than ten years, it isn’t all of it. There is so much more to my life than this miserable sickness, and thankfully I am still here to live the best parts of my story.
Every step this crooked, crazy journey has taken me on, landed me right where I am today. I would have never had the opportunity to know this kind of joy or feel this kind of love, if this disease had defeated me.
There are millions of people at the mercy of these illnesses. Although my fight continues, I consider myself lucky. Many are not as lucky as me. I am lucky not because of the treacherous medical path this has taken me on, but lucky because it has brought me here.
Please take a moment to share my story. To spread the word about these life altering diseases. Crohn’s disease and ulcerative colitis are debilitating to many who live with these diseases. This deserves more than a week of awareness. We deserve to find a permanent cure. Please help us find one. I have so much to live for. I want to always be here to watch this little boy grow..
As some of you may have noticed, I have been somewhat MIA on my social media and on my blog for a little bit. I have been posting and have been a little active, just not as much as I usually am. There’s a reason for that.
Last week, I ended up in the hospital. I was having a lot of issues with my body and baby, so I went into the Emergency Room. The doctors here in La Crosse, WI did not feel confident, and the scope of my issues were outside of the range they felt comfortable dealing with. They felt things were emergent to either med-flight or rush me to Mayo Hospital in Rochester, Minnesota.
It was decided that was going to be rushed by ambulance, but Nate could not accompany me on the ride. He came behind and my mom met us up at Mayo Hospital. I was in the hospital for nearly a week with several complications making it impossible for me to manage at home.
It was decided that upon release from the hospital, I could return home short term while a social worker from the hospital would work on a short term relocation plan for me. For these last few weeks before delivery, I will be staying in Rochester near the hospital in an extended stay apartment. This way, I will be close by the hospital in case anything emergent happens again.
What is going on?
In the recent blog where I shared my pregnancy photos, I mentioned that the doctors have taken me off of all my medications that help to keep my Crohn’s disease under control while I work towards remission. Now, off of the medication, my body has started to get weaker. I ended up with an infection and the infection put my body into a full-on flare.
Since I don’t have a large intestine, my small intestine has to learn the job of what its old companion had done. I have to draw my nourishment, vitamins, minerals, fluids, and much more from my small intestine similarly to what the body does with the large intestine. Not only do I rely on that intake, that same intake is what is helping to keep baby healthy. When I got sick last week, the function of the small intestine failed me, and my body was having a difficult time absorbing ANYTHING. This made it difficult to keep food down, my body was severely dehydrated, and some of my blood test numbers were dropping making it difficult to keep my nourishment markers where they needed to be.
Because I am pregnant, normal options for treatment aren’t always viable because they can affect the baby. There were so many limitations that the doctors could treat me with. It took some time and patience, but we were able to find a way for me to gain some control over my body without causing more stress to me or baby. At least, for now, it was enough to go home and prepare for this upcoming relocation.
What will this mean for YARNutopia?
I am home for a few days. Soon, I will transition to an apartment closer to the hospital in Minnesota. I will stay there temporarily until our baby is born. Nate will be with me on the weekends, and my mom will be coming to stay with me during the weekdays, as I can’t be alone. All my care will continue through Mayo Clinic in Rochester.
(Pictured above is a photo of my mom and me in the hospital last week)
(Pictured above is me, feeling better)
Because of this transition, I won’t be able to be as active or as present on my social media sites. I won’t be checking out completely though! No way! I love my social media! I will, however, be taking a small step back to get things under control with my health and prepare for delivery. There are LOTS of appointments, checkups, and tests to be done in these last few weeks! But don’t worry! I will do what I can, when I can! So, please keep checking the Facebook page, click on the links I share, share photos of your work. I’ll be crocheting to pass some time, and I hope to keep on keeping on. I will be sure to check in as often as I can!!
I will also try to update you as much as possible. Until baby arrives, the most I will be doing is trying to keep as healthy as I can so he can be inside growing and developing. We need him to be the strongest he can be! We are almost to his due date, so we are hoping for a not so bumpy ride to get there! Haha!
In the next few weeks, I am still hopeful to post some new blogs, a few new posts, and whatever I can do, but in the meantime, I will pull from the archives some great classic patterns, some oldies but goodies, and I will share work from my fellow designers! And once baby is here and I am recovered, I will be back better and stronger than ever!
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
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.
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.
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!
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.
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!
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