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..
Disclaimer: This blog contains sensitive pregnancy photos. I ask everyone to be respectful and any negative comments will be deleted. It took a lot for me to be vulnerable to share these images. With my health history, I wanted to be as transparent and open as possible with this miraculous pregnancy.
Many of you already have been following my journey and know that my health history has been plagued with illness, numerous surgeries, and plenty of setbacks. I had my colon removed in 2008 because my Crohn’s disease was so progressive. Doctors, worried about the dangerous potential of colon cancer and with fast deterioration of my colon, removed it to save my life. That journey was wrought with so many setbacks and ongoing severe illness. Chemotherapy, biologic treatments, thousands of procedures, multiple ostomies, hospitalizations, and repeated surgery had severely impacted the quality of life I was living in my late teens into my 20s. Most of my dreams were put on hold just to survive.
The one dream I held onto and hoped for was to one day be a mother. Doctors could never give a definitive answer as to whether or not pregnancy could even be possible. It was always a “wait and see” possibility. Without my large intestine or parts of my small intestine, even carrying a baby to term was a huge risk. And, it has been. This miraculous pregnancy has been filled with many issues, illness related problems, and so much worry. Yet, this sweet little boy growing inside me is a fighter. Just like me.
That is why, as we came closer to my due date, I dreamed of having pregnancy photos taken to mark this extraordinary time in our lives.
My colo-rectal surgeon told me last week, despite all the complications, try to enjoy this. “Enjoy being pregnant, Nadia.” She said, “Time goes so fast, we forget these moments. Try to remember how exciting it is to feel him moving…” And it is! This is so true! I have to appreciate everything I am going through to bring him here, and I love him so much that I don’t care how much I have to endure. This is temporary and so worth it.
Next week, I stop the last of my medications needed to keep my disease in remission, so our baby has the best chance and can be his strongest at birth. That part is very unsettling because I don’t know what my body will do without those medications. I am hoping that the last dose will sustain me through the final weeks until delivery and beyond. With that in mind, I decided now was the best time to do these photos. While I felt as good as I can expect to feel, I wanted to capture the power of this moment and the profound feelings of this health and pregnancy journey. I channeled my inner “life-giving goddess” for these powerful images!
I want to thank my mom and dad for their help in bringing my vision to life through these photos, and a huge thank you to Nate for being the most amazing husband and best friend on this journey. I couldn’t have done this without him..obviously..haha!!
“Life reveals her beauty one precious miracle at a time.” ~Flavia
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!
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
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.
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.
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