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’s no secret that my battle with my health has been mostly an uphill one. Numerous surgeries have taken their toll on my body for the past ten years as I continue my fight. My Crohn’s disease has to be considered in every facet of my existence. My life, daily decisions, activity, diet, my body, and my future are ruled by this illness and how it will affect my daily living. After ten years, it is “Normal for Nadia” to be at the mercy of this condition. It just is that way. Like a habit, living with severe Crohn’s disease becomes part of my routine.
Doctor appointments, daily meds, regular testing, procedures, and so many details have worked their way into the fiber of my ordinary existence. Even getting married in March was overshadowed by the very real possibility that I may end up sick or in the hospital on our wedding day. It’s just the reality of living with chronic illness. Fortunately, adrenaline was my friend on March 17, 2018 and it helped carry my aching body through the day without incident! Our wedding was the most glorious day ever. Sure, I paid for it afterwards, but I would do all of that 1,000 times over just to relive that beautiful day!
Hardcore family planning
Nate and I always knew we wanted a family, we also knew that it would not be an easy path to having one. Several months after getting married, we sought help from my doctors to find out if I can safely support a pregnancy since I have such a challenging health history. I underwent a series of tests, some incredibly invasive (dignity be damned). A team of specialists were assembled to oversee my care if we were able to get pregnant. According to all these insane tests, there was no reason, despite my health battle, that I couldn’t get pregnant. We were so relieved! We were aware it would be very risky; the warnings from the medical staff came across loud and clear, but we have confidence in the high-risk team overseeing my care. They were very realistic but also reassuring. I was facing my 28th birthday, and although we weren’t aggressively trying, we weren’t being careful either. So, in early November–two days after my birthday–with symptoms that screamed that I might be pregnant, I went to the store and bought a half dozen pregnancy tests.
My internal dialogue was: “I just spent a small fortune on something I am going to pee on. Who cares!??? I need answers!”
It all comes down to a (+) sign
It was a Friday afternoon, November 9th. My friend Sarah was coming to town for a visit, and I was planning on picking her up at the bus station in a few minutes. I only had a small window to privately check out my pregnancy suspicions. So like millions of women before me, I peed on the stick and nervously waited through the minutes that could change everything. I was pacing, nervous and fidgety. How do you distract yourself for those moments without constantly checking if you have your answer? If “a watched pot never boils,” does frantically fanning a pee stick prolong the results?! Because that 5 minutes felt like a flippin’ lifetime!
The test read (+) and I freaked out! I called my mom on Skype immediately, and I was hyperventilating and crying and couldn’t get out what I needed to say. I completely freaked her out because she thought something tragic had happened. I couldn’t speak, and my dramatic reaction had her thinking the worst. I was able to show her the pregnancy test and get her expert opinion on what it was saying. (Like I didn’t already know, right?!) Were these tests saying what I thought they were saying? Of course they were, but I needed Dr. Mom!!! She talked me through it and asked me what Nate said about it…
Oh. My. Gosh. Nate!!! I had yet to tell Nate! How did I not think of that?
She suggested that maybe I should have called him first! Oh my goodness, absolutely! I was a bit of a frantic mess. Where’s my coat?! I’m wearing it. Where are my keys?! In my hand! I had only a few minutes because Sarah’s bus was about to arrive! I jumped in the car and decided to stop at his work! Woops! Was that a stop sign? Just kidding! I am grateful I didn’t receive a citation on the way to tell my husband!
We are having a baby… What do we do now?
Nate came out to the car and I had the test stick in a Ziploc bag. I told him I have to tell him something and without asking, he just said, “You’re pregnant.” I cried, I laughed, and I shoved the pee stick in the Ziploc at him and told him to look at it. We were so happy! He said he had a strong feeling. He knew. What emotions! So high, but then reality started to sink in like “What are we going to do now”? Even though we didn’t know what direction to take at that exact moment, we would figure it out together. We called my mom again from the car in the parking lot at Nate’s work. After talking to her, we knew I had to see my doctors first. We had to keep this quiet for a while. By all calculations, I was only about six to seven weeks along. Things were so precarious with my health and we wanted to make sure the pregnancy was viable and baby was healthy. We also needed to be sure I was fully healthy enough to actually support a pregnancy. On a scale from one to ten our emotions were off the chart. What ARE we going to do now?! GAHHH! WE ARE HAVING A BABYYYY!!
Game Face and A No Colon Surprise Party
Nate went back to work, and I had to pick up Sarah. How was I going to keep a straight face? How do I keep this from my best friend? Although I was busting to tell her to the point I was getting twitchy, I knew I couldn’t. I am the WORST at keeping a secret, God knows, and it was stressful to not blurt it out! I put on my best game face and decided to get it out of my mind (yeah, right!) and enjoy the weekend. Little did I know that the reason Sarah was really coming to visit was because my mom, Nate, Sarah and Nida were planning a surprise party to celebrate my birthday tied into a No Colon, Still Rollin’ – 10 years later party! WHAT IS HAPPENING!??? Saturday afternoon my entire family and all my friends surprised me and I couldn’t say a word to any of them! I ate three poop emoji cupcakes just from the stress of it all. Only Nate and my parents knew, and I couldn’t talk to them with everyone around! Again, ALL THE EMOTIONS!!!
Thank goodness for poop emoji cupcakes. That’s all I’m sayin’.
Well, it’s true! We’re pregnant.
I scheduled my first appointment and we had our first ultrasound. I knew going into this that it wouldn’t be easy. Nausea, heartburn, extreme fatigue, restless legs, extremely sensitive boobs that have grown 10 times their size, body pains off the charts, visits to the ER to check scary symptoms caused by adhesions from past surgical scar tissue, phantom sharp pains in my non-existent anus, my ostomy is shifting to the side as my tummy begins to grow, the scars on my tummy are being stretched, back pain, sciatic pain, vivid dreams and nightmares, itchiness, sleeplessness, aversion to certain foods, no appetite to ravishing hunger, even more profound vitamin deficiency (particularly folic acid and magnesium), chronic asthma symptoms to the point I need my rescue inhaler constantly and now a nebulizer, and more issues are plaguing me night and day, and I’m only past my first trimester!
But, it’s all worth it.
Especially at that very moment when we saw our baby on the ultrasound.
Suddenly, it all became real. We heard the heartbeat and we laughed and cried.
We called it our “little bean.”
We instantly fell in love.
Our baby is due in June 2019, and our hearts are so full.
What now, doc?
We had our first minor complication. There was a subchorionic hemorrhage (a blood clot) that was found on the ultrasound. The doctor said it happens in implantation, and unless I had excessive bleeding (I was only having some bleeding), not to worry too much about it, and it would be monitored. I also had to cease a bunch of my medications. In stopping the meds, I risk some complications, but I have been managing things pretty well. One medication I can’t stop is my biologic injection. I am so worried about taking it, but I can’t risk getting sick to the point it would put me and baby in danger. My team has warned me over and over not to stop it.
I have to be truthful, I was contemplating stopping my biologic injection. The grave warnings from all my doctors have me reconsidering as I face having to take it this week. There is no evident risk to baby, but to me, if I stop, it would be very grave. I could become too ill and not be well enough to sustain the pregnancy, putting both of us at risk. Every doctor concurs. I do have to stop taking it at thirty weeks into the pregnancy to best insure that baby comes into this world the strongest and healthiest it can be. I am concerned without the protection of any medication to control my disease, my body won’t cooperate. I am hopeful. I am optimistic. I am scared. I won’t lie, I know what I am facing, and I know it will be worth it, but I also know this isn’t going to be an easy journey. Nothing this wonderful ever is. I have learned this lesson over and over in my life; I am familiar with how this goes. I am familiar with the bargaining process.
Now we are three!
We are now in the planning stage. I am almost 14 weeks pregnant, and have been following all the doctors’ instruction and am closely monitored. I am also chronicling my pregnancy on The Bump Phone App! According to the app, today our baby is about the size of a lemon! I have regular doctor appointments both with my standard team as well as a high-risk OB-GYN in Rochester, Minnesota at the Mayo Clinic. I couldn’t ask for a better crew of docs overseeing our care! They are so thorough. My last appointment with the specialist was two hours! We are in great hands, and we’re hopeful that things will continue to go well. I just pray that I stay healthy and strong for our little sweet pea. My heart is so full and all I want is to provide the best for this tiny baby despite my challenges.
Merry Christmas to Us!
We told Nyle, Nabeel, Samantha and Des over Thanksgiving. We also went to visit Nate’s dad and gave him a special “Grandpa” shirt.
We also told Nate’s brothers that weekend, too. Other than immediate family and a couple close friends, we decided to wait and reveal our news to everyone else over Christmas! Our family and friends are elated, and some told me they “just had that feeling!”
Today, I wanted to share this with our YARNutopians now that our extended families and close friends received the news. Now, my crochet project list grows! Baby stuff galore! I already have some baby projects on our agenda! What an exciting year of crochet we have ahead of us! I hope to continue with our filming and projects as long as I can and will continue after baby’s arrival! We all have so much to look forward to in the New Year. Not only are we expecting a new addition, but my brother and his wife are also expecting a new baby in January! So many reasons to crochet! Haha! I am excited and filled with joy to share our news with all of you. Cheers to 2019! Thanks for being with us on this crazy and wonderful journey!
When I was diagnosed, it wasn’t clear right away whether I had ulcerative colitis or Crohn’s disease. My disease was so progressive, and I was so sick, that each treatment was like grabbing straws in the hopes that something worked. I prayed to avoid surgery, I prayed to survive.
On the cusp of colon cancer and failing treatment, there was no way to avoid the inevitable. Surgery was the only choice. Well, surgery or quite possibly death. But I was 17 years old and the idea of losing my colon was terrifying. I remember the team of doctors-specialists, surgeons, students, all filing into my hospital room to deliver the news.
I remember my surgeon drawing a picture with a black pen on white paper. “We will cut here, remove this, and make an opening there, create an ostomy out of that…” each scribble demonstrating what he planned to do to me. It was all so abstract and unreal. It was like I was that paper person and it was as simple as drawing a cut across my tummy and pulling my intestine through my abdomen. JUST. LIKE. THAT. But I am flesh and blood and not a series of sketches on paper.
All I knew is that my life would forever be changed. Illness changes everything, losing my colon was collateral damage that this disease was leaving in its path. It was killing me from the inside, and if my colon wasn’t removed, then there was not much hope for a future. I prayed to just survive.
Go ahead then, take it out.
Surgery was scheduled, my Living Will intentions were made, I signed the papers and cried when they wheeled me away from my parents, holding my mom’s hand until I couldn’t anymore. Until I had to let go… It’s so hard to describe that fear of the unknown. I was sick. Not just sick but deathly ill. If this was my chance at survival, would I really survive? I prayed to live through surgery. I prayed to survive.
I survived the surgery, but I was left with a body that was so unrecognizable to me. Cuts across my abdomen, part of my intestine on the outside, an abnormal anatomy that was hard to comprehend when I was just a teenager. Actually, no matter how old you are, this is something so incomprehensible. Who goes to the bathroom in a bag? Who lives this way? How do I live my life going forward? I am just a kid. Why me? The litany of unending questions each one more palpable than the last. I prayed to survive. Now how do I do that?
That was 10 years and more than a dozen surgeries ago. That was 10 years and more than 100 hospital stays ago. That was 10 years and 1,000 procedures ago. That was 10 years and a lifetime ago. I will never forget that scared young girl. Now, 10 years later, although I am still in a battle with this disease that has finally been diagnosed as Crohn’s disease, I am stronger and I am a survivor. Today, I live with a permanent ileostomy and a permanent positive attitude. I survived. 10 years. I survived.
This is the surgeon who performed my first surgery
Annually, the first Saturday in October marks a day of recognition for ostomates. Ostomy Awareness Day is a day to shed more light on this life saving surgery. I take this opportunity to try and educate others about this surgery which saved my life.
What is an ostomy?
An ostomy is a surgically created opening in the intestine. The intestine is then brought through the abdominal wall to form a stoma through which waste passes into an appliance on the outside of the abdomen.
No one really knows the exact number of ostomates worldwide – estimates range from 450,000-1 million people. Many, like myself are surviving and thriving because of this life saving surgery. We would not be here without this. Ostomy surgery is often the last resort after exhausting and failing every other treatment option.
Why do people get ostomy surgery?
Cancers, inflammatory bowel disease, spina bifida, perforations, trauma, accidents, gunshots, neurogenic issues, diverticulitis and several other reasons can lead to why a patient is LIVING with an ostomy. Some patients have temporary ostomies while others, like myself, live life with a permanent ileostomy.
What are some myths about ostomies?
Unless people are educated about this, the stigma exists for misconceptions and misunderstanding to form. Common myths about ostomates are:
We always have to wear baggy clothes to hide our appliance
We can’t participate in sports or be physically active
An ostomy is a death sentence
Only elderly people have ostomies
Speaking for myself, as someone who had her first ostomy surgery at 17 years old, I am LIVING proof that these are myths. My Crohn’s disease was so progressive as a teenager that I would not have survived without having my colon removed and been given an ileostomy. On the cusp of colon cancer, my alternative was to live with this surgery and try to get my life back from the grip of a horrible disease. Things are not always easy and my road to acceptance has been rough at times, but rest assured that I do not smell. I love fashion and wear a wide variety of clothing. I was never athletic, but that isn’t because I have an ostomy, it’s because I am a klutz. Ostomy surgery saved me from an absolute death sentence. ANYONE, no matter what age, can have ostomy surgery.
I hope this helps provide some information about something that I, and so many others, live with each and every day. Thank you for the opportunity to educate and advocate on this Ostomy Awareness Day 2016 and for taking the time to read this blog and help the awareness grow!!
Without this surgery I would not be here to share my love for crochet with the world.
Today, May 19th, is World IBD Day. More than 5 million people across the globe suffer – often in silence – from inflammatory bowel diseases including Crohn’s disease and ulcerative colitis. I, Nadia, am one of those 5 million people, and those that know me know I will not stay silent. As long as I have a voice or platform, I will use it to help build awareness and rally for so many who continue to suffer or are no longer with us because complications from these devastating diseases have claimed their lives. Some of my closest friends have lost their fight and yet there are still people who have never even heard of IBD! How is this even possible?!
Crohn’s disease is a VERY serious chronic auto-immune disease causing inflammation, bleeding, swelling, and ulcerations in the entire gastrointestinal tract. There is NO cure. I have undergone life altering surgeries to remove my entire large intestine, parts of my small intestine, my rectum, and now, I live with a permanent ileostomy as a result of the destruction this disease has wreaked on my body.
When most people look at me the most common response I get is, “but you don’t look sick.” I shouldn’t have to bear my scars to prove that I am. I have suffered through countless hospital stays, surgeries, complications, and infections. I have been the subject of multiple studies and treatments in a quest to get this illness into remission. Presently, I am taking a potent biologic drug recently approved for the treatment of Crohn’s disease, and it has shown great promise. For the first time in 8 years, I have been out of the hospital for over 140 consecutive days and am enjoying every ounce of my life that I can.
When one lives with chronic illness we become savvy at hiding our pain. Some suffer completely in silence behind a mask that hides how terribly ill they truly are. Today, on World IBD Day, and on every day we cry out for recognition – to stop patronizing attitudes of “but you don’t look sick.” Tell me, how is sick supposed to look? To stop having IBD labeled as a ‘bathroom disease.’ To end misconceptions like if you ‘change your diet or avoid stress, everything will be alright.’ To minimize the ridiculous ad campaigns that exist further stigmatizing this illness. Today, we continue to educate, support, and build awareness so that one day a cure will exist for Crohn’s disease and ulcerative colitis and no more lives are lost. One life gone is too many. This is just a small part of the truth behind IBD.
To EVERYONE reading my post, I implore you to educate yourself and make Crohn’s disease and ulcerative colitis a household name. Talk about IBD so you can educate others through this example. Surprisingly, once you open the door to conversation, you will find others who are also there fighting a battle of their own. Please spread the word.