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,
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
Hello Nadia, The pain must be excrutiating. I think you have a very good thing working for you and that is your age. I survived an airplane crash and I had just turned 20 years old 2 weeks before it happened. I spent a year in the hospital. I found cards from people cheered me up. Sure would be nice if I could send you cards or anything to cheer you up. My 4th grade teacher was still teaching when this happened and I got a huge envelope from her children in the class and reading everything and seeing how their little minds worked was something to behold. You never know why people come into someone’s life but today my brother came over after his visit with the surgeon and a lot of what you went thru lies ahead for my brother. Nadia your father is terriffic with his camera work. I think you are the best. Your enunciation is perfect and you are truly a delight. I could go on with how your life has changed mine but we only get so much space and it is 4 am in the morning. I just finished square 31 and the one for today. I kept telling myself I wanted to start this idea of the blocks and I keep getting projects that interfere. Well I am going to try to do 2 a day till I catch up. I wish I had a smart phone so you could see some of my color combinations. I loved your minion tutorial and I made 21 of them, I wanted to do Elsa hat for my 3 granddaughters but thought it would be time consuming and hard. Well someone who bought the minion hat wants one for her daughter and another hat for her son in March. May this be a truly spiritual time and hope your doctors have found the right combination of medicines to keep you out of the hospital . My love and prayers to you.
Dear Nadia, your story touch me and I am so inspired by your courage and outlook with the hand you have been dealt in this life. Thank you so much for sharing with us and thank you for also sharing your talent of crocheting I am so happy that you have found away to help you cope through creating such beautiful work. Your videos are so well made and instruction could not be any better. I believe in the power of prayer and now that I have heard your story I will be praying for you sweetie and that soon there will be hope and a cure for this awful disease, take care!
Dear Nadia: I just read your story for the first time and I am so overwhelmed with what you have had to endure. I do agree what God takes you to he will see you through. You are such a brave example to all of us. Thank you so much for sharing your wonderful talent of crocheting with us. I am not talented enough to make designs myself but I copy well. I love your work and you are in my prayers. God has something special planned for you.
I hope you are healing well, resting and recovering. I’ll keep you in my prayers. I love your patterns/videos. I made your Cheshire cat hood for my neice, for Christmas. She looks so cute wearing it. Thanks for all of your great videos <3
I am currently working on your mermaid tail pattern😁. I pray you are feeling better than ever these days. I pray you will walk into 2016. Your patterns are are so lovingly composed and shared. Thank you for your generosity towards other💕 . God bless🙏🏼
Hello Nadia, I do hope you are doing ok. I will be praying for you. You have inspired me. I am almost 46 now and have been using a wheelchair since 2003 due to back, knee, feet, and leg issues. The pain I go thru is unbearable at times but gosh I can only imagine the pain you go thru. I am not the best crocheter but I do try. Your videos have helped me a lot thank you so much. You are truly Gods gift to us. God bless you my friend, Wilma
Hi my name is Mariam. I am trying to catch up with you crocheting the “365 days of granny squares”. I started late by 45 squares so my daily homework is crochet the current daily square and do one from previous youtube episodes. i also will be doing the granny square coat. You look great in it. I would like to thank your Dad for doing the videos. Are you knitting also?
You’re an incredible woman and a brave brave soldier. Hang in there! My thoughts and prayers are with you and your family.
Wow, you have endured a lot. My nephew has just been diagnosed, he is 19. I am making mermaid tails for my granddaughters, thank you so much for the FREE pattern, we will make a small donation to finding a cure. All those who criticise your patterns should read your blog!
Nadia I just read your story and am in awe at your strength and positivity. I wanted to find out how your surgery went on December 9. I imagine it went as well as can be expected since you’re able to give us the 365 days of granny squares. Either way you are my inspiration. I truly love your videos and the way you teach and wish that you get better soon.
I just found your crochet site…..you are such an inspiration. Keep fighting! You designs and videos are inspiring. Thank you for sharing your love for crochet with us. You will be in my prayers for continued healing and longevity. xMary
I hope you are well and have been recovering well too. Hearts around the world are here for you.
I almost lost my mother last year with all of her sudden problems that ended with the loss of her leg, and LG intestine. I stayed every day with her and your story brought all of it back and flooded me with all of the emotional memories. I’m very glad you found strength and purpose with crochet and you do very beautiful work, your love of love comes through in your videos as well. I’m thankful that you share them.
I got sick and couldn’t work outside the home 6 years ago (I was 27) and was a single mother of 2 at the time. I only knew how to work and provide for my family. Finding crochet helped be through the pain, the emotions, helped me in so many ways, felt like it gave me a new path. Now I get to Homeschool my kids so we don’t miss out on adventures together. My heart is with you on your journey, I hope we all keep each other strong.
Thank you for sharing all of you with us, I hope you get peace this year and for many to come
Nadia, I just came upon your site by accident … Your beautiful socks appeared on my newsfeed and curiosity led me to your blog. I have been browsing through it for the past hour truly amazed at all your gorgeous work. When I saw the 365 days of granny squares I was blown away with your talent and dedication. Then I came to your story, your life, your struggles, and what you have endured and continue to endure… I had to wipe away the tears. At that very moment I realized that my little aches and pains are nothing compared to what you have and still are experiencing in your young life. I am truly inspired how you can continue to share your talent with others during all of your suffering. I will be praying for you that this latest surgery will be your last and that you can live your life pain free, at least for awhile. Bless you. 💗
Nadia, I came upon your site through a link on knittingparadise.com for your knee socks. They are truly remarkable. I read your story and pray that God will bless you and heal you. You have a great talent and a wonderful spirit. I will pray for your quick recovery.
I accidently came across your tutorials looking for a heart pattern. I didn’t know anything about making them, as Ive only ever crocheted scarfs and such. I made my very first “entralac” crochet by Tunisian crochet afghan for my brother and it came out beautiful. So, I wanted to make a heart themed afghan for my oldest niece and I found this video on making one. It was yours. Didn’t know it at the time. I just wanted a quick fix I suppose, as I got more into making the hearts for the blanket, I came across this video for a heart on granny square….your #41 in the 365 a day….and fell in love with granny squares. ive changed my mind about the heart blanket and decided to go with a granny square “Hearts and Flowers” afghan, using all of the ones from your 365 tutorials. I finally found the original heart tutorial, and it was yours. How amazing was that! Thank you for inspiring me with your granny squares, your love of crochet and your amazing tutorials. You are a great teacher and I watch you every day to learn more. On a side note, I can appreciate your health issues, as I was diagnosed in 2004 with Celiac Disease and Microscopic (collagenous) Colitis. I can understand the “Looking normal, yet on the inside my body fighting against itself every day”. I had a friend who had Crohns. He had the ileostomy temporarily after having most of his bowels removed. To top it off, he has mild Cerebral Palsy ( was in a wheelchair as he couldn’t walk much). I hope you keep facing each day with your wonderful attitude. You go through so much more than I ever will, but my prayers are with you, and bless your family for their strength and understanding of your disease.
While your journey is incredibly challenging, I do hear hope, love of self and life! We are all the walking wounded. I feel your inner strength Nadia. We are blessed you are here!
I Love Your Work.You are a brave person and you are in my prayers.
Sending healing prayers and blessings in the name of Jesus. Praise be to God. You survived all those operations and went through all those struggles you are a very strong person. God is always with you. He brought you out from all because his not finished with you yet. You have lots more work to do for the Lord.
Good morning Nadia…
I just read your blog for the first time…what made me read it was tht I saw your utube post of the baby dress come up on my phn this morning so I looked at some of it…
But I was reading some of the other things that you have and saw that you have this blog…so I decided to read it…
First I want to say that you are truly blessed…I say that because I can read the strength in your words…and yes (God don’t put know more on us than we can bear)…
Before I started reading your blog…I prayed for you…I pray tht GOD will heal you and give you unmeasured strength to endure this (LAST SURGERY)…
ALSO…DON’T STOP DOING WHAT YOU LOVE…NO MATTER WHAT’S GOING ON…GOD STILL HAS EVERYTHING UNDER CONTROL…
MY PRAYERS WILL CONTINUE TO BE WITH YOU AND YOUR FAMILY…IN THE NAME OF JESUS…😇😇😇 Andrea
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Dear Nadia, today was the 1st day I heard your story of undeniable bravery, strength and faith. I found this article thru an old high school friend of mine who’s daughter is your sister in law. I remember when my friend began posting photos of their engagement and the blessing of their adorable new baby. I also remember photos of you and how beautiful I thought you were, then and still are. Whether you realize it or not, thru your journey, you have touched more ppl then you will ever know. You give strength to those who no longer have it. You give hope to those who can no longer believe in it. You give faith to those who have lost it. My hope for you is to finally be able to live a life outside of a hospital room, get married and raise children for many many years to come, until you are called home into the arms of our fathers….
I too suffer from ulcerative colitis/Chrons…mine is at times pretty painful but you for sure have had a far worse condition…you are in my prayers sweetie…Love your videos…you are a natural teacher on many levels…thank you for sharing your story and your talents. God bless you and warm hugs to you Nadia…
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God Bless you, Nadia. Thank you for sharing your personal feelings and talents. You are an amazingly strong woman. I have learned a lot from you and not just crocheting but how to look at life positively with faith and a strong will!
I will be praying for you!
Hi there, always i used to check blog posts here in the early hours in the
dawn, because i like to find out more and more.
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I’ve just arrived at this post because of your FB link today (November 2016)… I had no idea. Thank you for sharing all your skills and enthusiasm despite your health problems. x
Your yarn community loves you and I know you will make it through this terrible time! I am a stage 3 cancer survivor and although I have been so fortunate, it pales in comparison to what you are living with!
I will send out prayers for you, and expect that you will make a complete recovery ❤️
Best of luck to you and thank you for all you haves graced the yarnutopia community!
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I’ve just read your blog. Your strength and faith touched me and I am sure you’ve touched many others. I cannot say I know how you feel, however, I was married 21 years to someone that had the same diagnosis and surgeries as you. I am Praying that you continue your faith and knowledge of God’s many blessings and grace.
Thank you so much for the inspiration you offer AND for YARNutopia!
I loved the crocheted colon picture! Smiling in Atlanta, Ga.
Just remember that God makes no mistakes! There is a reason for your disease, we don’t know the reasons, but God truest has an awesome plan for your beautiful life! Look where He has brought you already, I will keep you in my continued prayers
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