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.
Continued Obstacles
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
All the best through your surgery, keeping you in my prayers!!!
Nadia i feel i know you. I am so new to crochet your video’s have inspired me so much to get better at this craft so many love. I talk to you when i follow your video’s. My husband just laughs…I am like WAIT!! WHAT !! Nadia that’s to fast…OH I see now !!!…OK girl lets back up and do that again i didn’t get it…hahaha…I will keep you in my prayers…God has brought you so far…I know he is not done with you …And what you have accomplished with your video’s and blog, helping so many learn to crochet Not to mention your strength, you are an inspiration to everyone to never give up You have touched so many lives…Mine included I have to thank you. ..
Nadia, you are an inspiration. After reading this, I know God, by whichever name one calls Him, must really have a plan for you. In spite of these ordeals, you are a blessed person. On December 9th I will be praying that this new battle will, once again, be won.
I look forward to your return. Prayers for your healing and that there is a guiding presence for the doctors as they do your surgery and for the nurses and family as they continue your care.
You are a very brave, young woman.
I wish you well.
Stay strong Nadia. Praying for you …
Oh my goodness Nadia, what an awful time you’ve had of things! You are such a courageous young woman, and I really admire your strength and determination as you travel this path in life towards better health. Please know that I will be thinking of you and praying for you to make a speedy recovery!
I KNOW OF JUST A SMALL PART OF WHAT YOU ARE GOING THRU..MY SON AND GRANDSON BOTH HAVE CROHN’S…YOU WILL BE IN MY THOUGHTS AND PRAYERS LUV…THAT ALL GOES AS IT SHOULD FOR YOU THIS TIME,,,<3
you are a very brave girl will keep you in my prayers. Thank you for your wonderful videos!!!
Best of luck for your surgery. I know you will have the best medical team working for you and your family will be by your side for support and giving you lots and lots of love. I will be sending healing vibes your way from the 9th until I see you are well and back creating amazing crochet projects again.
You are a blessed lady who is being looked after by angels and your God. you will come thru this with flying colours and soon be your happy healthy self again. Hugs and much love.
Jocelyn
Dear Nadia, my thoughts and prayers are with you as you face this terrible situation. I taught myself to crochet watching YouTube videos less than a year ago and was so pleased when I found your tutorials. You make everything seem effortless and easy to follow even for a beginner like myself. You have inspired me to take on bigger challenges. Thank you so very much for sharing your talent and your charm with me. I will keep you in my prayers and have added you to my church’s prayer chain. Please keep us updated and know you have many, many people who care about you:)
Nadia may God continue to bless you. You are one young amazing beautiful strong awesome lady ♡. I pray for a quick healing recovery I also pray that our Lord has his heavenly arm around you as well as the surgeon doctors nurses nd your family. Thank you for sharing your journey with us. I can’t imagine what you go through all day every day. You are a Hero in my book. I know about the osomy my husband has one it’s been almost 2 yrs coming up in January. You are amazing 1 for going through what you have gone through nd you keep pushing nd teaching us they awesome telnet. I will keep praying for you. I tell my family oh look what my friend did today. They say mom who’s that you don’t have friends I said I know but I do now . Thanks you for being you. I know you are very special I didn’t know why nd now I know. Thank you for ur awesome telnet nd beautiful person you are. God bless you my friend.
You are truly a warrior ..and a big inspiration!! Good luck on your upcoming surgery..Wishing you a speedy recover and thoughts and prayers will be with you through your surgery and recovery!
You are incredibly amazing and strong willed……in our thoughts and prayers!!
Wow! That’s all I can say. You have been through so much and you keep on going. You are a true inspiration to all of us. This made my eyes well up with tears, you have had such a struggle and you just keep on fighting. I am so glad that you have so many people around you for support. I say this for myself and others…. please take care and rest, you will be in all our thoughts and prayers and we look forward to your return and learning from you some more.
Xoxo
Keeping you in prayer~may He give you strength and comfort in the coming months and blesses you with improved health in the new year.
Nadia, I have a nursing background and am amazed at the fight you have had to keep ahead of Crohns and its insidious grip it has on you! To say you are strong in temprement and life is an understatement!
You have only recently become my teacher, I love the granny square shrug and many others.
You have my prayers and many gentle hugs to carry you forward, be ever strong and come back to all of us who love and learn from you.
The trials of this life prepare us for the next. May Allah guide your surgeons hands and grant you ease in your recovery. As I sit and recover from a hysterectomy I know crochet has kept me sane. May you get back to what makes you happy. Keep your face to the sun.
May God be with you. I am so glad I found your youtube channel. You are a talented beautiful young woman whom I admire much. You and your famiky ard in my prayers. Hope you rock New York!
Nadia i am so sorry for all you Illness ,prayer sent to you that all goes well . Watching your videos has helped me so much and i can once again make thing for my grandchildren ,I use to make thing for my children but didn’t have enough time as life changes and i had to work . To make this short i forgot most of what i knew and found it hard to read some of the books but your videos did the trick .I’m retired now and on a fixed income so crocheting thing for my grandchildren and grown kids has helped me so much so thank you thank thank you .Please stay a positive as you are ,you are a very strong lady and hope all the best for you . your fan Maryanne
Praying for you🙏🏻🙏🏻🙏🏻
Nadia, I wish I could hug you and be there when you wake up from surgery. You will be in my prayers and in my heart. You are such a talented young lady and always sounds so happy in what you teach on video. I hope and pray everything will go well and you can continue to enjoy life. Yarn hugs , Melissa Crowley from San Antonio, Texas 😊
Nadia, you’re the best 5th sisty we could ask for….after your surgery we may have to have an official induction ceremony. 😀 Love you!!
I know so very little about this disease, but it looks like you are a very stong woman who went through so many things in life. As a 25 years old myself, I could not imagine having to deal with this. You are strong. You are beautiful. And, for what it means, I’ll keep you in my mind.
Big hug from Canada.
Nadia, you lovely-lady, life has dealt you some very hard cards indeed. I’m so happy to know you have an awesome ‘poker face’ through it all. I have no doubt you will preserver through this next challenge. Please know that you are an inspiration, to me personally, as well as others who may not comment; I will send all good thoughts & energies your way on the 9th and continuing after… I can’t wait to hear an update from you after you have your stint at “the Joint” .
Much love!!!
Nadia, I’m sitting here in tears. I wish I could give you a big bear hug right now. I had no idea you were being challenged with all that. I will be thinking about you and praying for you to stay strong…..as I know you will. I just recently “found” you, and your videos have quickly become some of my very favorites. I LOVE your kind and gentle way, your choice of projects, and your clear teaching, and watching a video by you is just a pleasure. Take care sweetheart!!
Nadia, you are an inspiration to many of us who loves to crochet. I now understand your health condition, I just followed and watched you videos recently and always wonder about your health issues. Thank you for sharing. You are one brave young lady. Continue fighting and praying that you will surpass everything. Get well soon, the world need someone like you. Be blessed!
You are truly an inspiration. My thoughts and prayers are with you as you continue this journey called life. Enjoy your visit with your brother and know that there are people the world over who are praying for you.
Thank you for sharing your testimony. You are in my prayers for complete healing. You have inspired many.
Bless you Nadia! I am one of your crochet fans, and now one of your health care champions too. You’ve been through so much but still manage a cheerful attitude…how you do it all I don’t know.
I love your videos and pray that you get well.
Your crochet (& now healthcare) fan,
Mary Martin Doukakis aka yayamama
Jesus Christ is the Master Physician. I hope you know Him as you Lord and Savior. I pray his blessings on you and your team of health care workers. John 3:16
Prayers for you to keep your spirit bright and your body to have strength. I to have this disease and underwent 7 surgeries in a3 year period. I was left to heal from inside out. You ARE so strong and successful. Positive thoughts!
Diana
Nadia, you are a strong, brave young woman to have endured all of this so far and to keep trudging forward. We are all here for you and pray that all goes well with your upcoming surgery and recovery.
Nadia,
You are such a strong, brave, beautiful, creative young woman. My heart goes out to you and your family. You are in our thoughts and prayers as you fight this horrible disease. Thank you for sharing your story. You are right. Not all issues and battles we fight can been seen from the outside. Wishing you the best. Safe travels to NY. xoxo
I’m sure you have a guardian angel watching over you…keep strong…you can do it! Lots of huggs..Phaedra
I read this with tears streaming down my face. No one should have to go through this. It’s devastating. You are a brave hero and such a strong woman. You have forever changed me by educating me about your health issues. In turn, I have also passed that knowledge along to others. You’re lucky to have such a wonderful family and don’t have to go through it alone, and they’re so very lucky to have you. Imagine how much you will be able to accomplish in your life having been repeatedly tested by grave situations. After this, everything is easy. It’s just a matter of doing it. And you KNOW you can! It may seem like you’re being held back, but there’s so much education and life experience in this as well. You’ll still get to do all those things and have a full life, perhaps even fuller than you ever would have without this experience. You’re a hero for sharing this with us, for going through it and for fighting like hell. You are beautiful. Show this disease who’s boss. It’s a worthy opponent, but you’re stronger than that. And when you feel as if you’re not, think of all the people you still need to teach to crochet😜. I’ll be thinking of you often during this time, wishing there was some little thing that the crochet family could do to help you come out smiling.
What if we all made a few little granny squares, sent them to you and you sew them all together once you’re up to it? Then you could wrap it around yourself and feel like we’re all hugging you at once!
Best of luck, be strong, stay strong, kick butt!
You are such a blessed soul and an asset to the crochet community. You’ll be in my prayers.
Please stay brave and strong…I know I have no right to say that to you as I have not suffered your pain.
I truly believe that keeping a positive attitude can be as powerful as any medicine. I will be thinking of you and praying for a for a fast and setback free recovery.
Wow, I just started watching your videos. I am so sorry to hear that you’re so sick. I pray your surgery goes through without a hitch and your recovery goes well. Stay rested and good luck.
As the mum of a son who was diagnosed with this horrible illness at the age of 12 (12 years ago) I have full admiration for you. He is very much like you with the attitude of life is for living in the best way you can. More needs to be done to highlight the crippling nature of this disease and it’s complications….you are doing a wonderful job of this! Keep up the positivity and let’s see if we can get rid of the taboo this illness seems to have with it. My thoughts and best wishes are with you and your family.
Nadia I found you through your cocoon sweater video. I love your work and you have inspired me so much. I just started crocheting a year ago when I was going through a dark time in my life working with yarn and making projects helped bring light back into my life. Your cocoon sweater is the first wearable item I have made. I have acutally made two and plan on making your other granny hexagon sweater next. I did not know your situation you have such a great personality I had no idea how involved your health issues are. I will be on my way thru Texas on the 9th my thoughts and prayers will be with you. Again I love your videos they are the best!!!!!! As are you!!!!!!!!!
Nadia, you are the reason why I started to love crocheting. May God touch you with His healing hands and give you a speedy recovery.
I just read your blog. I am bawling like a baby. I feel like I have known you for years, even though we’ve never met. I play your videos to hear your voice at times, even though I am working on a project already from you. We all connect somehow for different reasons. I am so blessed to have found you. Sending love , light and strength to you, when you feel you have none left. You are such a beautiful gift to us all. You’re loved and admired by many. Thank you from the bottom of my heart for all you’ve done, through crochet and chrons awareness.
Deborah
I really feel for you. I too have abdominal issues, but none as severe as you. I wish you a better road ahead and a better 2016. I admire your positive outlook as I battle depression. I too endured many surgeries and now endure other surgical issues in my later years. I beg you not to give up, but to know that you give many of us joy and pleasure with your blog and your creations. They are as beautiful as are you. I enjoy seeing you model your own creations instead of having someone else do it for you. You have an incredible talent and beauty. Good luck and better health to you.
What a journey! I’m believing with you for a full recovery and a cure for chrons and UC (I have UC and have been winning the war against it for the last 7yrs w/minimal flare ups). My family has enjoyed the many projects you have taught me to make and are SO thankful for you and your life. We are praying from Oregon!
I found your site only a few months ago and have enjoyed it very much. i was unaware of your health struggles and all I can say is YOU ARE AMAZING. The strength you possess is beyond the scope of us mere mortals. To me you portray a Super Hero of the Nth magnatude. My prayers are with you for this upcoming surgery. I pray for a complete recovery and nothing more to happen to you. I use crocheting to help overcome my ailments (which are nothing compared to yours). Without crocheting I would be sitting and wasting away. You are an inspiration to all. I’ll Smile and Lift my face to the Sun and count you as a blessing in my life. God Bless You
You will be in mine and my husband duaa!! Keep fighting and win.
Thank you so much for your inspiration! Even my son loves your videos and is learning to crochet and he is 4!
I’m not sure how I ended up on a crochet blog (I don’t crochet, or sew, or knit (trust me it’s best for everyone that I don’t) but somehow I came across this posting as im sitting in my doctors waiting room reading everyword in complete and utter shock. Erase your name and pencil in mine and you basically have my story. Right down to “at age 17”
I’m 37 now and the surgery that you are heading for I have already had. It was hard and long to recover from and I’m not going to pretend it was easy but it SAVED MY LIFE. Like you my life was slowly circling down the drain because the doctors wanted to try everything they could to avoid permanent Ostomy and by doing so (which I appreciated) just gave my body on hell of a beating.
But trust me things are going to get better. After a decade of tubes, fistulas, surgeries, year long hospital stays (at a time), and even some trial meds nothing worked until I recovered from this surgery.
Now I’m 37, no steroids, minimal immune suppressants and something I never thought would happen, I even found love. Someone that didn’t find my scars and ostomy gross or look at me with pity. He looks at me says I’m beautiful every single day.
I pray we really are living parallel because Hun… It only goes waaaay up from here!
There Is 1 strange thing I will warn you about. I have phantom rectum syndrome. Ya you read that right. My bum is silly and thinks I can still poop from it. It’s a bizarre feeling but it doesn’t hurt, it happens a handful of times a hear and really sitting on the toilet makes me remenece about the good old days when I didn’t poop standing up.
If you ever have any questions or just want to vent. You have my email.
2016 is going to be a good one 🙂
Nadia, my heart hurts for you reading your story. My own daughter is 24 and I thank God every day for her and her good health. I can not imagine all you have had to deal with in your 25 years….I know the pain of IBS….it is an unseen illness so many people can not understand. Since it can not be seen, no one believes anything is wrong…I pray for you daily and will be adding prayers for you on Dec. 9th…You have no idea how much you have helped me. For that I say thank you so much… Be well sweet heart and come back to us…
Stay strong Nadia. You are in my prayers during this very difficult time. You are truly an inspiration. Nobody should have to go through a tenth of what you’ve gone through. Your words hit me very hard (I’m crying while trying to write this.) and I look forward to the day when you are well enough to come back and share your success story. The post from Marisa Tavares above should give you a glimmer of hope. Enjoy your visit to NY with your family. Best of luck to you with your upcoming surgery and I will certainly be looking for your videos to show up on my YouTube notifications.
Lots of Love and Well Wishes from Windsor, Ontario, Canada. <3
All the best Nadia. Many prayers.