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..
It has been 4 weeks since Nasir was born. He came into this world a true miracle and is perfect in every way. I am overjoyed that he is here, happy, healthy and growing like crazy. His due date was June 30th and throughout my high-risk pregnancy, it was understood that with so many health issues, surgeries, and not having a rectum or anus, the probability for me to deliver him in a traditional birth was going to be out of the question. I was told by not one, two, or three doctors but EVERY doctor on the team, that it would be the safest for me to have him via c-section and to do it a week before his due date. Although this didn’t coincide with my idea of the “ideal birth plan,” I ONLY cared about having a safe and healthy delivery for me and safe birth for him. It doesn’t matter how our babies enter the world, it only matters that they arrive safely in our arms!
High Risk Pregnancy
Throughout my pregnancy, many of you are aware that I had numerous issues not only with my Crohn’s disease but also that I had to cease all my medications that keep my disease in remission. I also had severe Symphysis Pubis Dysfunction, I had problems with tearing my adhesions and scar tissue from previous abdominal surgeries, I have a Septate Uterus, I had terrible sciatica, I had anemia, I lacked the nutritional support for myself and Nas because I don’t have my large intestine or parts of my small intestine, and I had a herniated ostomy that prolapsed. Because my anatomy isn’t like most, my intestine pooled to one side of my body and my baby was restricting the digestive flow. I also had the general issues of constant heartburn and swelling like a lot of moms-to-be deal with. I tried to be grateful, thankful, happy, joyful, and appreciative for this miracle; and I was. However, I won’t sugar-coat it, I was freaking miserable in my body. I hurt every single day and probably complained to Nate or my mom incessantly EVERY. SINGLE. DAY. all while keeping a smile on my face and forging ahead because I kept telling myself that if this is the sacrifice I have to make to have him here, then I can do this! It was only temporary. My “this too shall pass” mantra was on repeat every moment of every day. I was miserable. But, just to be clear, I would do it ALL over in a heartbeat for this outcome. Nasir is magical…
Things weren’t going well
Over a month before I was to deliver, I was rushed by ambulance from the hospital in La Crosse, Wisconsin up to Mayo Clinic Hospital in Rochester, Minnesota because I had a severe infection and could not keep anything in. I needed IV support and to be monitored because they thought our baby would make an appearance MUCH earlier than we thought. I was so scared. I was alone in the ambulance with the lights and sirens going as we rushed down the highway. I knew Nate was somewhere in a car behind me, my mom also, but being alone and not knowing what would happen was terrifying.
Thankfully, the doctors were able to hold off delivering Nas and just treat the infection. I was hospitalized for about a week before going home, but we were advised that due to the complicated nature of my pregnancy, I would be on “bed rest” (which couldn’t actually be bed rest because I have a history of forming blood clots), so I took it really easy. The doctors recommended I move to temporary housing in Rochester to be closer to the hospital, and I was there a few days before things began to decline again. Read more about our Temporary Transition here.
We couldn’t wait any longer
Although I was advised to hold off on delivering Nasir for as long as possible to give him the best chance for development, the doctors also understood the gravity of my health situation and knew it would be dangerous to wait too long. Not long after my hospitalization, I was still having problems and was not doing well. I woke up on the Wednesday before he was born feeling terrible. My entire body felt like I had one big bruise covering every inch of my skin. EVERYTHING hurt. The slightest touch hurt, and I was swelling up like a balloon. I called, and the doctors said to meet them up at the hospital. My mom took me in because Nate was at work. After a short examination, the doctors suspected that my infection set off a full body flare of my Crohn’s disease. They couldn’t wait any longer. If they didn’t deliver him soon, I might have gone into labor and could have potentially faced a threatening situation where it would be too late to assemble the ENTIRE team of doctors necessary to bring Nasir into this world and keep me safe in the process. Not only was my disease creating a serious health risk, the baby was breech. There was no time left. It would be way too perilous to wait and risk going into labor and a vaginal delivery. Delivery was scheduled immediately for next morning.
I crumbled under the weight of everything and started to cry.
I wanted more time for him to develop. I was scared for him, what if something went wrong, I was worried about the risks, and the surgery and, and, and….and then I took a deep breath.
I called Nate at work.
“You need to come to Rochester right now. They are going to deliver our baby tomorrow morning…”
“Are you serious? Is this for real?”
“Yes, just please come as soon as you can. I need you…”
I don’t know if Nate could even think after that phone call, if he could even concentrate enough to finish his work for the day, or if he was on autopilot all the way up to Rochester. He made it up there by 10 pm that night and we stayed up nearly all night talking. He kept reassuring me the entire time that everything will be OK.
An assembly of sixteen
When Nate and I arrived at the hospital the next day, along with my mom, dad, and my brother, I was ushered into a room immediately. I was a bundle of nervous energy but also ready to meet my baby!!
Shortly after arriving, I was given an IV and little by little the entire assembly of doctors and nurses ushered in team by team to see me. All in all there would be 16 medical staff in the room with us to deliver Nasir. HOLY MACARONI!! 16!!! I was only allowed one other person with me, and of course that was Nate. I was then taken into the OR alone while he was told to get garbed up.
While I was in the OR, it was freezing. More IVs were placed. There were so many lights, so many machines, so many instruments, and so many people. I started to shake uncontrollably. I was given an epidural and a spinal, but the placement was giving me issues. They kept telling me to sit still. I couldn’t stop shaking. I hugged a pillow tightly to my front while they put the needles in my spine. It took forever. At one point, I felt a severe pain in my hip. They hit a nerve and my leg involuntarily shot out and kicked without me doing it. Yeah, this wasn’t working. They moved it a little higher in my spine and it was better.
From there, things moved so fast.
I was put on a table with my arms spread out wide. I had all the IVs in me, they erected a curtain up in front of me. So many people ushered in and out. The anesthesiologists, the surgery team, the OB-GYN team, the colorectal team, the nurses..SO MANY people! That team of 16 was in full action!
I wanted Nate and asked them to check on him. They said he was outside pacing. I wanted him with me, and it wasn’t much longer and he was able to come back into the OR. As soon as he walked in, they started to open me up. The doctors were wonderful about talking me through every step. I had the best cheerleader by my side. Nate was incredible. The anesthesia team was also very supportive and kept encouraging me softly, cheering for me, kept me comfortable, and just made me feel safe. I get choked up just thinking of these moments–moments I wanted to be fully present to remember.
I started to feel a severe pain in my right shoulder and started to get afraid. I told the doctor and they said they had my uterus out. The uterus is connected to the nerves in the shoulder and the pain I was experiencing was called “referred pain.”
It was only moments later when we heard our baby’s tiny cries. Nate started sobbing, I started sobbing. They lifted him over the screen so we could see him. My first thought was how tiny he was. They quickly moved him to the warming table so Nate could trim the cord and the team moved fast to get all the baby stats. Within moments, they brought this tiny naked baby to me and laid him on my chest. I could barely see or breathe I was crying so hard. HE WAS BEAUTIFUL. So precious. My miracle.
It took some time for the surgeons to close me up because they had to clear out scar tissue from former surgeries. They excised my old scar from the time I had the wound vac, and cleaned all of that tissue to make my incision a cleaner closure. It took quite a while, but I wasn’t even paying a moment of attention to that. Instead I was counting toes and fingers, memorizing my little boys face, and through my tears and laughter, I was rejoicing in this miracle.
As I was wheeled into a recovery room, Nate went to tell my family that our baby arrived. We wanted a few minutes alone to relish our first moments as a family of three. We also had an overflow of emotion that was just indescribable and we wanted to bask in the intimacy of sharing these very personal feelings together.
I remember when they lifted our baby over the screen after we heard his cries. I recall looking at him and instantly knowing that his name in my heart would be Nasir, but I didn’t say anything. To be fair, I wanted to hear Nate’s thoughts about his name. As soon as I asked him what our baby’s name should be, he said Nasir! We both felt it. We both knew. His name is Nasir Nathan.
Nasir is a Pakistani/Arabic name that means “Victorious,” and there is no more appropriate name fitting to this little boy than that. After all I have been through, all the health struggles and trials, I look at him and I know it was all for this moment.
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!
I am typically pretty upbeat and positive by nature. I have had to overcome a lot in the past decade, and I have spent some of that time feeling situational depression due to battling illness, surgery, dealing with body issues from having so many scars and a permanent ileostomy. When I found out I was able to get pregnant, and subsequently carry this baby, I was over the moon! Depression wasn’t even on my radar at that time.
I Knew It Wasn’t Going To Be Easy
I am extremely high risk. I have a team of doctors and specialists across three hospitals that will be involved in bringing this baby into the world safely. Of course, I am a bit nervous, but I also have great faith and trust in this team to do everything to help bring this baby boy into the world, keeping us both healthy and happy.
Here’s where I struggle. I am supposed to be happy. I AM happy. Don’t get me wrong. I’m happy to feel baby move and happy to know I will hold him in just a few short months. However, what is happening to my body is bringing me so low. I am just not feeling overall happy, and I didn’t expect that.
A Complex Medical History
Without delving too deep into the graphic details, I’ve had 14 surgeries which have left my entire abdomen full of scars. I have numerous scars running up and down, diagonally, and across my torso. Drain scars, former ostomy scars- just scars, scars, scars! Following one surgery, I had a serious infection so my abdomen had to be re-opened, and I was put on a wound vac to help heal by secondary intention. That process left my tummy full of puckered and thick scar tissue. All this scar tissue causes adhesions. As my abdomen stretches, the scar tissue is stretching and tearing both on the surface and internally. It has been challenging to deal with. This, along with changes in my ostomy with my intestine prolapsing outside my body, has left me feeling depressed over all these reminders that my body isn’t quite the same as others.
This pre-partum situational depression has hit me hard. I am struggling with my body and disease and with my hormones running amok. I have found myself in tears quite a bit lately. I am not writing to complain, NO, but to confront what is happening to me and to share this with others who may struggle with these same feelings during pregnancy or at any time. I know that this is supposed to be the most blessed and happy time of my life, so why am I feeling so blue? I don’t have the answer.
Crochet IS Therapy
During this time, my comfort and refuge is found in my craft. I am so grateful for a loving and supportive husband and the support of a fantastic family, but when I am alone, I find solace in the stitches and the repetitive nature of crochet to help distract and focus my mind on something other than these feelings and the pain from my scars.
Lately, I have been working on so many crochet projects for not only my little guy, but also for my sister-in-law who had a baby girl in January. My niece is the perfect model! These projects, alongside my work here at YARNutopia, has given me a deepened purpose, and these goals have helped me focus on more than the issues I am dealing with.
I know I’m not alone. I know that this is only temporary. I know this is a very small price to pay for bringing my baby into the world. I know I have support and love of an amazing husband, family, and community. I know all these things. I also know it is ok to feel. It is ok to be sad. It is ok to hurt. It is ok to ask for help. It is ok.
After spending a little time yesterday on self-care – I bought myself some springtime flowers to brighten my home, I did some retail therapy and bought myself a few feel-good things, I had my nails done, I took a long walk in the sunshine, a short drive and played my favorite music, and I talked for hours with my mom-I am happy to say that I feel a little better. Today has started off on a good foot and writing this has helped. Also, it has helped to be working on some crochet projects, and I went to brunch with Nate. Each day may present a challenge, but I am thankful be able to face each one in strength and resolve and overcome those challenges!
Share with us:
Please share your stories of pre-partum or post-partum depression or your struggles with feeling out of control. Share your stories of how crochet has brought you comfort during a time of need.
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
WEGO Health is a mission-driven company connecting healthcare with the experience, skills and insights of Patient Leaders. They are the world’s largest network of over 100k Patient Leaders, working across virtually all health conditions and topics. Their network collaborates with pharmaceutical and life sciences companies, agencies, consultancies, startups and all types of organizations across healthcare.
The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire. I was nominated for Best in Show-for my blog YARNutopia.com.
Since being nominated for this award, I need to get endorsements to help boost my chances at winning. There is an amazing plethora of individuals who are all using their platform for building awareness and I am privileged to be among so many wonderful nominees.
If you could take a moment to read more about my story here on my home page and also the following blogs listed below:
My battle with Crohn’s disease is an ongoing journey. The latest news in my health update is that Nate and I started to discuss having a family, and we are on a new journey to someday maybe have a baby. It has been dramatic and a bit worrisome. I will be visiting a specialist who deals with very high-risk pregnancies and consulting about that. There have been many recent discoveries that will make things very complex moving forward, but we will get through this together.
Please consider endorsing me for this award, I would appreciate that gesture tremendously! It is wonderful to have recognition for crochet, but having a voice to spread awareness about debilitating diseases such as Crohn’s disease and ulcerative colitis may bring us one step closer to a cure and makes what I do so much more meaningful. Thank you.
The WEGO Health Awards program was created to recognize and honor those making a difference in the online health community. It provides the opportunity for community members to thank and support the Patient Leaders and patient-centric initiatives they admire. I was nominated for Best in Show-for my blog YARNutopia.com, and after the endorsement round was closed, the numbers were tallied, and I was notified that I am a FINALIST in this category!!! Thank you to everyone who has endorsed me to win this award!! It means so much to me to have the opportunity to use my platform and raise awareness and share the journey I have been through with Crohn’s disease. I know this isn’t a health blog, but it’s because of my health that crochet is such a huge part of my life.
What’s Next? WEGO Health will be announcing the winners live on Facebook during an online ceremony September 26-28th. Winners will then be invited to an in-person ceremony during the Connected Health Conference in October. Stay tuned!
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
Yesterday, I had a follow up physical and doctor appointment after having a bit of a health scare last week where I ended up in the ER. After going through a number of tests and scans, it was determined that we will postpone any surgery for now, and I will undergo additional testing and possibly a HIDA scan, for newly discovered issues that are affecting my gall bladder and other organs. Other than that, things were looking pretty “Normal for Nadia” as my doctors like to say! I’ll take that!
During this appointment, I was telling my doctor about my recent engagement and how Nate proposed on our trip to Europe. She was so genuinely excited for us. She hugged me three times and was overjoyed because she has seen me through so much. She also asked about how the transition will be as I prepare to transfer some of my medical care to a new city. Although it is far down the line, I will need to find a new physician and leave her behind. That’s a very difficult thing for me to do. It began to hit me how many changes are about to take place not only in my health journey, but life and business as well! Oh Boy!
Support goes a long way
My entire life has been spent with my parents; it is no secret that my Mom is my best friend. Although I did spend a short time away from home attending university, illness/surgeries impeded my ability to continue. After 6 separate attempts at going back to college, I decided to postpone it indefinitely. Illness won that battle. (I am still winning the war) I may consider going back one day, but for now, it was the best decision.
During those struggling years, my parents encouraged me to start a small Etsy shop and website to showcase my crocheted items. It was also during those times that, while in the hospital, so many nurses, nursing assistants, and doctors asked for help learning how to crochet. I began showing them basic techniques and taught while I was in the hospital. Teaching crochet in that setting helped me SO much. It also gave me a great idea!
Planting the seeds to grow a dream
I will always be grateful to my mom for her insight to give me yarn and a hook so long ago. She pushed me to do something constructive during those long months when I was in isolation or just spending a month hospitalized for whatever health problem I was having that kept me there.
When you are isolated and feel alone, having a skill or hobby to pass the time becomes invaluable. It becomes a lifeline that keeps your mind occupied and stops it from wandering straight into depressing thoughts. Thankfully, I was able to take that time to hone my skills in crochet and develop my craft into such a blooming network and community. It helped to open a platform that I could teach others my craft. My dad helped me start a YouTube channel, and I could reach others with my video tutorials. Having that connection to others quite literally SAVED me. There, an idea born out of a desperate situation, became the seed to grow this dream.
Looking forward to next year (2018), I am excited to be getting married and starting my life with Nate. Out of respect for my Pakistani culture and my personal beliefs, I will not live with Nate before we get married. What has me feeling a bit anxious is how my life will be structured to continue YARNutopia from a distance. I will not only have a new marriage, new doctors, a new home, and a business to balance, but an entire change from everything I know. Moving even a few hours away from home hits me at times that is both exciting and scary. This weekend, while celebrating Mother’s Day, we sat down to discuss this.
Structure and Discipline
Presently, we try to film 2-3 videos a week. Prior to filming, my mom and I design several items that I create off camera. I perfect and refine the pattern and then proceed to head into the studio for filming. It is in the filming process that we decide what videos to keep, what projects will be popular, or what ends up on the cutting room floor. Sometimes only one video will make it to our channel. This process is lengthy and tedious. It requires many hours invested and a lot of trial and error. Our days are planned, structured, scheduled. We each execute our particular tasks and responsibilities. My mom handles a majority as she also takes care of our home on top of everyone in our family as well as running and managing our business.
Having the structure and discipline of working with parents who have built a photography/videography business from the ground up so many years ago has been priceless. I just hope when I move away into my own home and start my life with Nate, the lessons they taught me will carry over into our life. I have never had the opportunity to work outside the home and this will be a big challenge to maintain this work ethic on my own, which incidentally, I never have had to be alone. Nate’s career has him working 8-12 hours a day. That is another idea that will take some getting used to.
Nothing Can Stop Us
Recently, Nate and I have begun to search for our “build a dream” home. We have been scouring the listings for a house that can accommodate our must have list. We sat down and made a checklist of things we want in a forever home.
My top priority is a place for a craft room/studio (and a dishwasher, but that’s another story!) We have gone through several places that have potential. Let’s see if we are able to find a place where we can create our life and provide me with the ultimate craft room! (That will be a future blog post of its own).
My dad will set us up with an in-home studio, and his plan will be to travel and film at our home. My mom and I plan to design, create, and work remotely via Skype. So many fun and exciting changes to come in the next 300 days as we plan out this move! As much as I look forward to all these changes, leaving my old life behind and starting over feels a bit daunting and overwhelming at times. I’m just eternally grateful for the support of a wonderful man, my parents, and all of YOU, who will continue to accommodate all these changes in order to see YARNutopia through this growth and transition.
Oh song lyrics, you give me the feels!
When I look back and reflect over the past nearly nine years of health challenges and life detours, I never pictured this being the way my life would turn out. I honestly wasn’t sure I would ever meet anyone willing to accept not only the voluminous health issues I came with, but also accept that I would need to manage a job that would fit my abilities and challenges. I could not ask for more in anyone and somehow through God, or destiny, it led me down this path. There is a song lyric that says, “This much I know is true, that God blessed the broken road, that led me straight to you.” No words could ever be truer to describe how I arrived to this place in my life. At times when I faced another health challenge, I always asked “Why!??” maybe this was always the answer.
“What is meant to be will always find a way” ~Trisha Yearwood
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