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The invisible red thread

February 1, 2012

There is an ancient Chinese belief that an invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but it will never break. That being said, I believe that everything happens for a reason and I am exactly where I am supposed to be in my life at this moment.

Setting the course

When I moved to Texas, following my permanent ileostomy surgery back in September, I ended back in the hospital within four days of my arrival. I was so sick at the time and did not even have the chance to find new doctors yet. I was overwhelmed with the Texas system along with having to relay all my advanced and extensive medical history to doctors I just met. Having to arrange for medical records from Wisconsin to be faxed here, and make dozens of phone calls with my surgeon in Wisconsin, only to find out there are doctors here unwilling to treat you because you were not in their insurance network. This all made for a very stressful and anxiety ridden 10 day hospital stay. Looking back, it was a strange blessing in disguise because I was forced to expedite everything in such a hurry that in a very short time upon arriving, everything was transferred here.

During the stay at the hospital, I was under the care of a GI doctor by the name of Dr. Rassa Shahidzadeh whom I immediately liked and trusted. During the 10 days, I spent long hours going over my health history and all the background of my illness with him, and and felt very comfortable with how he handled my treatment. When I was discharged from the hospital, I was told to follow-up with Dr. S, but unfortunately he was out of my insurance network and I was told to find another GI. I cannot describe the bitter disappointment. It was so frustrating to find a new doctor, go through all the background on my disease with him only to find that I could not see him post-hospital stay. It was a big letdown to say the least. So the search began to find a new doctor in my network.

When one door closes, another opens

It took some digging but I did find a doctor by the name of Dr. Balachandar. I set up an appointment to meet. Our meeting was very successful and I walked out of her office almost high with excitement and relief. She was wonderful to me; an excellent fit. And suddenly all the worry, all the anxiety and all the frustration led to this one moment and all I felt was an incredible weight lifted off my shoulders. Her demeanor and willingness to want to learn about my condition and history was inviting and open. Her gentle nature was very fitting with my personality, and she is good at explaining things. I ask a lot of questions, and I am grateful that she not only answers them all, but she gives thorough explanations and more than what I even asked for. She didn’t hurry me through the appointment like I have experienced in the past. Since I had to leave such great doctors behind in Wisconsin, it was a big relief to finally call Dr. Balachandar mine.

A lot has happened since I moved to Texas–some good and some not so good. But for the most part my health has improved considerably, and I am grateful that my better days are numbering more and more. Recently I had a small setback and ended up in the ER for a brief stay. My illness flared, and not only did it affect my tummy, it went into my joints. I had a follow-up with Dr. B this past Monday, and when I left her office it occurred to me while walking out to my car, that I had such a peaceful feeling. I always get so worked up about everything and somehow, someway this doctor calmed my fears. I was actually relaxed. Her interesting mix of modern medicine and Ayurveda healing practices are a welcome change to what I was used to before.

This is how it was it was meant to be

It is very difficult to leave trusted physicians who have walked along your path through so many trials of a chronic illness. It is harder yet to find another doctor willing to take on where those doctors left off, someone open to face the challenge of a complicated patient. I am grateful to have found such a doctor. It’s strange how things happen and when you step back you realize that maybe THIS ALL IS EXACTLY the way it was supposed to be, that every step on my path led me to this place, at this time of my life. These are the people I was supposed to meet. These are the people I am supposed to be with. I had to let go of some, but I gained others. It is kind of profound to think about how life leads you to people and places that are meant to come your way and you don’t even know it yet. It’s as if that invisible red thread has already sewn together the people you are meant to meet on this hidden life line, those who pass through your life temporarily and those who stay.

“An invisible red thread connects those who are destined to meet, regardless of time, place, or circumstance. The thread may stretch or tangle, but will never break.” ~An ancient Chinese belief

~Nadia

Question: Have you established a good relationship with your doctor? Have you had to change doctors?

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What a difference a day can make

December 11, 2011

There is a quote: “it doesn’t matter how slowly you go as long as you do not stop”…sage words from my daddy on the day I ran my first 5K. Not just any 5K, but a 5K with a 14 obstacle course and a mud pit to run through. Yes, a grueling sequence of obstacles set along a 5K path that I decided to challenge myself to do, while I was in recovery from my ostomy surgery back in September.

When I had surgery back in September, I decided at that time, that I needed to set goals to try to get my life back on track. I was a wreck. Emotional and physical mess. I had to try to find ways to restore myself back to “me,” so to speak. The old “me” never really ran a 5K, but whatever…ha! I wanted to try, and I think it helps too, toward building my self-esteem which was damaged quite a bit. My confidence needed some repair as well. Setting goals and achieving them seemed like the best plan to accomplish this.

The best laid plans

It starts out small, setting goals to walk 10 steps from the hospital bed to the door. Then down the hospital corridor or around the nurses’ station until I was finally able to walk out the door of the hospital to the car to go home. Small victories. When I felt that my recovery was on par, I decided that I would start setting goals further out, ones to work toward. The idea of a 5K run came to mind. Upon researching, I found the Survival Race in Texas being held in December – exactly 3 months post-surgery. My first thought, “where do I sign up?” I figured 3 months would be an acceptable amount of time for recovery.

I bought a pedometer shortly after and started tracking how much walking distance I could put on in a day. Later on, I started shopping for an elliptical machine. Then, I began stretching and trying to condition myself to some level of fitness in order to get through this. I had a few setbacks along the way that started to concern me. I kept getting ill with so many infections, flu, colds, I had an abdominal abscess, and I kept having setbacks. I was worried that I would not be well enough to achieve this goal. But harder yet, only a few short weeks before the challenge, I was injured in a car accident. I was about to give up on the idea of doing this 5K. My body hurt so much, and I couldn’t imagine trying to go through this and make it to the finish line. I began to think that this was too soon after surgery, then having so many setbacks; I should probably bail out and quit.

But slowly, I began to improve. I started walking a course outside my house and kept going until I reached the 5K mark. I would jam to my tunes, and the time flew by. Then, I started to jog and my endurance built up and I felt confident that I could do this. I was just going into it thinking all I have to do is make it to the finish line. Don’t worry about the time, just finish. JUST CROSS THAT FINISH LINE!!

Race Day

The night before the race I was so nervous; I didn’t sleep well. I kept thinking about the day ahead and worrying about the obstacles; I researched all 14 and pinpointed the ones that I knew I could easily do and the ones that would be a bigger challenge for me. I kept thinking all along the way how this race is a metaphor for my life. There are all these obstacles, all these challenges, and I have to figure out how to navigate through them. I am not fortunate enough in life however, to know in advance what obstacles are ahead, but I think you get what I mean.

In this particular event there were tires to run through, a mucky river knee deep, muddy hills to climb, walls to leap, crawling under barbed wire through a pond, crawling through wet and muddy tunnels, climbing over wooden and metal structures, a rope wall I had to get over, a pit of paint balls I had to go through on my tummy, barrels to jump over, and a fire pit to jump across. Many times along the way I thought I wasn’t going to make it. I hurt myself, got afraid that I couldn’t do something, or that I would fall from the top of the rope wall—I sat at the top of the wall contemplating my descent. I got tired, cold, my asthma was making it a challenge to breathe, but at each challenge, I faced it, did it, and overcame it until finally, I came to the mud pit–the most difficult challenge of the entire course. It was a lake bed of pure mud that was waist deep. It felt and smelled like poo-(haha one must admit this really was the perfect metaphor for IBD!)

The mud pit was the hardest to overcome. Here, I struggled the most, I didn’t think I could get through, I lost my shoes and went through it with nothing to protect me, I got stuck and could not move, it was the part that slowed me down the most, and for a split second I stopped, looked up, and thought to myself, “I’m done-I can’t do this anymore.” This was the perfect analogy for fighting IBD. Still, I kept on going, and once I was able to make it out, I was still carrying the weight of 20lbs of mud on me through the rest of the course. Kind of like, how making it past the biggest hurdles, one still carries along residual weight of this illness. It doesn’t completely go away–sad but true. I have an ostomy appliance attached to my abdomen as proof and scars that will never heal.

Champion for a day

Finally after a little over an hour, covered in mud, blood running down my hand, and bruises on my body, I crossed the Finish line. I was never as physically thrilled to finish something in my life as I was to finish this. I.DID.IT…ME! It was my glorious, feel good, moment. I sank to my knees to thank God for carrying me to the finish line.

This race was tough, but then again, life is tough. Some of us learn this the hard way, but this challenge taught me something about life and about myself. I believe that no matter how hard something is, you eventually get through it. Unlike this race that ended in an hour, so many challenges in the path we walk through IBD take years to overcome if at all, but we celebrate small victories, good days, and overcoming the challenges. Sometimes we get to the end of a struggle and feel victorious. I also learned that even if I am afraid of the unknown or afraid of the challenge of what I am facing, if I have enough faith in myself to believe I can make it, I can, and most of all, I learned to not give up. I never gave up-I never quit. Even if it was only for a moment or a day that I could feel high on life for crossing that finish-line, to me, that moment was priceless. It took a long time to capture that feeling-I got to have it, and I earned it.

“Satisfaction lies in the effort, not in the attainment. Full effort is full victory.” ~Mahatma Gandhi

~Nadia

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Words of thanks

November 24, 2011

It generally is my practice to give thanks each day for all my blessings in life. Thanksgiving is a day of reflection on those blessings and a day set aside for recognition. There are days of celebration and recognition all over the world that deserve mention, and I try not to highlight just U.S. holidays or my personal days of celebration. But, today please let me make an exception. This week has been a very dark and sad week. It seems that when one thing goes up something must come down. I have learned my life is a strange wheel turning good and bad at regular intervals and have decided that this is something that I must learn to accept. Good or bad, it is life.

This has been a difficult week for personal reasons. A couple days ago as my parents and I were travelling out of town, we were on the interstate when a utility truck struck a car and smashed into us. I was in the back seat and was thrust into the back of the driver seat. My injuries required me to be rushed to the hospital by ambulance. It was a very frightening and horrifying experience. I suffered a sprained knee, whiplash, an injured shoulder, abdominal trauma and contusions, but I am alive and I am here to write this, here to give thanks.

But more heartbreaking, a good friend was killed in front of campus just crossing the road. She nearly made it to the other-side when she was struck by a car. The driver of the vehicle left the scene and is still at large. My friend was alive but in grave condition and died shortly after. I spent the past couple days in deep reflection over the friendship I shared with her and feel eternally blessed to have known her and shared time with her. I will always remember her non-stop happy personality and her ability to see the good in all. People pass in and out of our lives, and for every person that I met and has touched my life in some way, I will always cherish the moments we shared.

So, I write today to express gratitude toward so much. Always remember: Cherish your family and friends, life is made of years that mean nothing and moments that mean everything. Listen to songs that take you back to a special moment. Sing out loud even if you are off tune. Remember that every new day is another day to change your life for the better. Know that the times in life that seem like the worst, teach us and can give us lessons that can, if we chose, make us stronger and live better. Remember to take chances. Say you are sorry. It’s okay to cry; I do it all the time, both happy and sad tears. Say I love you. Laugh at lame jokes, and laugh until your ribs hurt. Sometimes we can’t solve our problems, that’s reality and sometimes reality is the hardest thing to understand. Make great memories. Take thousands of photos. Make time to do random acts of kindness. Make it come from your heart. Don’t look back and wonder what would have or could have been. Sometimes the smallest gestures change the life of one person and to them it means the world. PRAY-it doesn’t matter what you say or how you say it, just pray. No matter how far you go down the wrong road, know that you can always turn back. There are so many blessings…open your heart.

And it is with deep gratitude that I thank you for all your support.

Love, Nadia

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Nadia in the concrete jungle

November 19, 2011

Looking back over the past 12 months I can honestly say that it has been one of the hardest parts of my journey thus far. It has definitely been a year of loss and tears–feelings of hopelessness came with a resounding blow. I could lament and list all the blows I have taken, but I will spare you and myself from having to go over them again because the place I am heading toward is acceptance, and THAT is not such a bad place to be hiking towards.

September 2nd, 2011, marked a pinnacle point in my journey. It is the day I underwent surgery to receive a permanent ileostomy. Unless one goes through a surgery that physically changes their appearance and anatomy, it is quite difficult to explain the psychological and emotional feelings of what that entails. For someone like me, who has gone through three ostomies: 2 temporary and 1 permanent, it wasn’t something that with which I was unfamiliar with, but it was a trial in letting go of hope; hope for a turn-around in this disease, and a hope that my body will appear as ‘normal’ on the outside. It was a challenge to understand that this will improve my life.

September 2011-Hospital

September 2011-Hospital

The first two weeks following surgery went great, but then complications set in, and once again, I was hospitalized for nine days with a serious infection and abscess from surgery. For some reason, this was a moment of incredible defeat for me. I had undergone this drastic surgery to improve life only to end back in the hospital with more complications. I kept thinking that my whole life will be spent paying a price for everything that happens to me, and no matter what route I take it is still wrought with obstacles. Honestly, it was almost more than I could take. It was then, in the hospital, my mom said there was too much I haven’t done in life, and I have to fight a little harder to get well. She told me that if I could set a goal to work toward getting healthier for my 21st birthday, we would do something exciting.

Setting a Goal to Recover

Two months later, on my 21st birthday I felt well enough. So, we travelled to New York City-even though it was a short trip-it was incredible. For my first time in years, I was able to leave home and travel for vacation purpose and not health or medical related. That is a huge deal. HUGE! I am not sure if many people can understand fully what it means to travel for the sheer enjoyment of it!! For the past 5 years, 98% of the travel has been to visit doctors, hospitals, specialists, to have surgery, special testing, second, third or fourth opinions, but never for the pure sake of enjoyment. Over the years, I watched as both my brothers traveled all the time! Both of them left home to study abroad-one to Spain, and one to Switzerland, while I was too sick to even attend school. But this was my time. New York City, HERE I COME!

New York is Where I’d Rather Be

We arrived early on our first day and had time to see some sights. My adrenaline was pumping off the charts. Fatigue? Forget about it! Low energy? Wha!? That little pain? What pain? My mind was working overtime to tell myself that NOTHING better go wrong. My Health would not ruin this moment for me!

We headed out from the airport to our hotel in a New York taxi to begin my first adventure. Picture me in the back seat of the taxi, beaming from ear to ear, with a camera in hand, shooting a hundred pictures of the sights, from the window, OOOH-ing and AAAHH-ing at everything exciting. I was the epitome of your typical tourist. I was shameless about it! I did not care; nothing and no one would let the wind out of my sails! I was going to soak up every moment: feel, taste, see, hear– to bring to life all my senses to experience all this excitement! It felt so good. NO, not just good, this was amazing! Even when our taxi driver cut someone off in traffic, and we got cursed at, was awesome! We just got yelled at in a taxi driving around in New York City!

Happy New York Birthday

Once we arrived to our hotel, there were more surprises! A birthday cake and candles were in the room waiting for us! Sneaky planning ahead! With a view of the Empire State Building right outside our window, we enjoyed cake and juice, and we started our plans for the five days that we were going to stay there! First on the agenda was to pick up our all-access New York City passes. We headed to Time Square and the Planet Hollywood to do that. Oh my gosh—Time Square! I still can’t believe I stood there in the midst of all the New York chaos! It was almost too overwhelming and over-stimulating to this small town girl that lives on a ranch in Texas!

Birthday Cake

Birthday Cake

We picked up our passes and had a soda at the Planet Hollywood where the staff sang Happy Birthday to me! I was flying high, and then, it hit me for the first time of many during the week—I am on vacation. I am here for fun. No doctors or hospitals. This was just for me. The sting of tears came and went, but for a moment I had to say a prayer of thanks. So this is what it feels like, huh? This is what everyone talks about.

During the entire trip I was Face-booking every moment to share with my daddy, who stayed behind in Texas. I posted tons of photos! (I took over a thousand) I wanted to, not only have a timeline to share with Daddy, but also to have the memories to look back on when this was over!

Our first night was spent in Time Square, seeing the sights and soaking it all up, but we had a long day and ended it early as we were in bed by 11. Before falling asleep, so much was going through my head, but one thing I kept thinking was that travelling to New York with an ostomy was not difficult at all. Although finding a public bathroom was a little bit of an issue, nothing about my ostomy posed a problem. I kept thinking, however, that a few years ago this would have been completely impossible. For another time on this journey toward acceptance I had to say thanks for having the freedom my ostomy has given me to enjoy this moment. I closed my eyes, and I am sure I slept with a smile on my face.

Times Square

Times Square

Where Dreams are Made of

The next several days were a whirlwind of activities. We saw so many exciting places in New York it is hard to believe we did as much as we did. We went to the top of the Empire State building where I promised to call my brothers. Nyle and Nabeel shared my excitement so much! We walked through Manhattan, learned to ride the subway, walk through “Occupy Wall Street,” and then to the 9/11 Memorial at the site of the World Trade Center.

I have to say the 9/11 Memorial was the most heartbreaking, humbling moment of the week. I stood at the memorial site and walked through this serene place and could not help the tears that I shed as I read the names of each victim. I was standing at the fountain watching a gentleman touching a name, I walked a few feet away to give him privacy and felt him staring at me. I looked at him and asked if he knew someone whose name was on here. He pointed to the name of his best friend. I was so deeply moved and so sorry for his loss that I broke down in tears. I could not help myself. Maybe that is normal, maybe not. But suddenly it made so much sense that we are ALL on a journey. We all have obstacles and trials and pain. We all lose. We all suffer blows. Some are so much more devastating than others. Mine pale so very much in comparison. I have so much to be thankful for! (I don’t know who you are; stranger at the WTC site, but you impacted my life in that moment in a very profound way.)

9/11 Memorial--World Trade Center Site

9/11 Memorial--World Trade Center Site

Throughout the week, the list of activities grew: a water taxi down the Hudson River to see the Statue of Liberty and Manhattan from the water, Little Italy, Chinatown, more subway rides, Battery Park, Central Park, The Metropolitan Museum of Art to see Rediscovering Islam through the Arab World (which was amazing and profound), making my 11-11-11 at 11:11 wish in New York was exciting and kind of epic, Museum Of Worship, New York City Library to see the Malcolm X exhibit, Magnolia Bakery for red velvet cupcakes, and Grand Central Station! Through most of it I felt pretty good. I did get seasick on the water taxi and had to take it a little slow. It is like I lived a lifetime in those few days. Toward the end of the trip, we took in a Broadway show. We saw the Lion King in the front row of the balcony, and I was mesmerized. It was an amazing, out of this world experience! This entire trip was off-the-charts special. I was so happy to have friends and family encouraging and joining me on this journey even from a distance. It made sharing it so much more thrilling! I saw so many places just from the suggestions of others that I would not have gone to without their advice!

Statue of Liberty

Statue of Liberty

Be It Ever So Humble, There’s No Place Like Home

Late Saturday night, we arrived back home to Texas. I was ready to come home. I was ready for the trip to be over. Although exciting and adventurous, I am definitely a homebody. After all that adventure and excitement it did take a toll on my body. I used up the last reserves of adrenaline and energy I had to get through it all and it came crashing down as I hit my bed at home. I slept for 14 hours. It took a few days to get back to “normal” after all that experience, but if you ask me if it was worth it, I would give you a loud and resounding–YES!!!

Grand Central Station. I *heart* NY

Grand Central Station. I *heart* NY

“Though we travel the world over to find the beautiful, we must carry it with us or we find it not.” ~Ralph Waldo Emerson

~Nadia

Have you been able to travel? Share with us.

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Life interrupted: Ankit’s story

November 16, 2011

Here is another entry in my series on extraordinary living through IBD.

When I first heard Ankit’s story, he told me there wasn’t much about it that was remarkable. But this 22-year-old graduate student underestimates how much his journey could actually impact so many others. Those that live in an area where Crohn’s disease is virtually unheard of, where most patients are misdiagnosed with abdominal tuberculosis and struggle to find answers and solutions–his story brings us to New Delhi, India.

A Rude Awakening

After beginning flight school in the United Kingdom, Ankit was living high on life. Overcoming his parents’ reluctance to allow him to leave India, as well as a new start after a falling out with a very close friend he began his path toward his life-long dream of becoming a pilot. However, four and a half months into his training and days after receiving his private pilot’s license he began to experience abdominal cramping and serious symptoms that became worse over time. His symptoms included night sweats, vomiting, high fevers, and cramping. He lost an extreme amount of weight in a short period of time. He received antibiotics, fiber supplements, and laxatives for his first course of treatment, but it was unsuccessful. With no insurance and continued problems, Ankit resigned to the fact that he would have to leave flight school and return home to India for treatment.

Initially, upon his return, tests revealed severe inflammation in his intestines. Ankit was diagnosed with abdominal tuberculosis, and the course of treatment for that had begun. His journey through this disease began different than some as he had more issues with constipation. A week would pass with only a single bowel movement. The pain became unbearable for him. After a series of hospitalizations, the doctors then steered their diagnosis toward an intestinal blockage. Surgery was the recommended course of treatment, but thinking ahead, Ankit knew that according to Indian aviation rules, once he got major surgery, he would no longer have the option to become a professional pilot in India. His dream would die, and with that, a part of him as well, so he refused the surgery.

The Harm of Misdiagnosis

He began a liquid diet of Ensure because he could not eat regular food in the hope that the inflammation would reduce. He had low motility in his colon. He could drink as many Ensure as he wanted, but no solid food. Although still very ill, the liquid diet made him feel better, and he decided to re-enroll in college in India and work toward his bachelor’s degree. As he continued the liquid diet for a year, and worked through college, his illness impeded his everyday life. He struggled to pay attention in class because he became so uncomfortable, and because of the weight loss, he was often bullied by other students who had no understanding of what he was going through. He continued to fight strong. Although symptoms continued, not as severe, at this point he was diagnosed with IBS-C (irritable bowel syndrome with predominant constipation). Laxatives stopped working, and he began using suppositories regularly to relieve the pain.

After additional treatment failed, Ankit finally found a doctor that diagnosed him with Crohn’s disease. He was angry that for so long he was misdiagnosed and treated for something other than Crohn’s disease. His fear and frustration hit an all-time high. His research online revealed so many horror stories, telling him life was over because of Crohn’s. He stumbled across websites talking about overcoming Crohn’s disease with no drugs and alternative treatment through diet. He was deeply inspired by Jay from Crohnsboy.com who advocates the Specific Carbohydrate Diet (SCD) as a treatment for ulcerative colitis and Crohn’s disease.

Ankit then took treatment into his own hands, and although not recommended for everyone, he committed himself to a strict dietary regimen after reading the book “Breaking the Vicious Cycle.” Along with some dietary supplements, his journey with SCD began. His progress was slow, and he made many mistakes, but over time he began to see improvement. He learned how to take his physical and emotional pain and channel it into focusing on this new treatment. He focused on making himself well. His determination to heal was so strong. His strength and commitment to this diet began to take shape.

Along with diet, he continued to receive treatment for Crohn’s from his GI doctor. The diet, along with the medication, LDN (Low Dose Naltrexone), provided him very good results. No more pain, bloating, spasms, less constipation, and cramping. He combined the SCD diet with the Paleo diet and was able to come off of all laxatives and Crohn’s medication that he was taking. (Yay for Ankit!)

Taking Back Life

Now he lives his life in India on his own terms. He took his life into his own hands. He went off the beaten path and decided to heal himself because of the lack of understanding about this disease in his country. I quote Ankit: “MY GUT tells me I am doing the right thing and to hell with what others think or believe.”

He has now completed a year on the SCD diet with just a bit of cheating. This illness has made him a more compassionate and a stronger person. He values everything in his life much more. He is feeling “normal” now, and has decided to go back and complete his flight training after completing his master’s degree in software engineering. Even though he is in remission, he recently started being more proactive, and is taking homeopathic medicine to prevent future flares and to stay away as much as he can from conventional drug treatment.

Although we at UCVlog do not advocate for or dismiss any form of treatment, we do understand there are times that we, as the patient, have to take control of our journey. Doctors are human, they make mistakes, and we have to be our own advocate for our healthcare and do what’s best for us. I wish to extend a great cheer to Ankit for overcoming such a debilitating situation through sheer determination to get well on his own. For somebody that did not think he was that remarkable, I believe he should think again. Although life for Ankit was interrupted by Crohn’s disease, he was able to get back on his path to live his life the way he wants. Great job! Here’s to continued good health and happiness. Good luck in flight school, Ankit!

“Courage is not the absence of fear, but rather the judgement that something else is more important than fear.” ~Ambrose Redmoon

~Nadia

Ankit at Maharishi Dayanand University

Ankit at Maharishi Dayanand University

Ankit at Maharishi Dayanand University

Ankit at Maharishi Dayanand University

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Inspired by others—Kate from Australia

November 5, 2011

Since my recent permanent ostomy surgery, I have been thinking a lot about living the rest of my life as a permanent ostomate and how that will impact all the things that I want to do. Honestly, the way I have been doing for these past 2 months since surgery has made me feel that nothing can hold me back now. I believe that having this ostomy gives me the freedom to do so much more than I thought that I ever could, and it poses no interference to all that I can see myself doing. I am very sensitive and tuned in to so many other people that are on a similar journey and have watched as they, too, have made similar improvements with their health since their ostomy surgery or going through the challenges of this disease. Putting myself out there and sharing my story has given me the rare opportunity to meet others and hear their stories as well.

Many people share their history through their illness, accomplishments, challenges, photos, videos, and through all I am inspired by their tenacity and strength as they persevere. Often, I receive something that inspires me to share with others. There are many such stories that need to be told and this is a great arena to share…this is one such story.

Recently, I met Kate (from Australia) through the United Colon Vlog. Kate does not have inflammatory bowel disease, but she has been challenged for more than a decade with a prolapsed bowel or full thickness rectal prolapse at the age of 18. Although not the same, her symptoms very much mirrored that of a person suffering from IBD. After 5 major surgeries, she now has a temporary ileostomy. She told me recently that she will probably face permanent ileostomy surgery in a couple of years, as there is no quick fix, and her surgeons believe that a reversal will probably be unsuccessful.

Kate has not allowed this to hold her back. Not that long ago, she traveled to Canada from Australia with her husband. During her trip, her husband photographed her in various places showing her ostomy. She sent me a message in my inbox with the photo gallery attached, and with every photo, I just kept getting the goosebumps as I saw her accomplishments in every portrait. My heart connected with her immediately and I kept saying to myself “Oh my gosh, Kate, look at you!!” I actually felt the stinging of tears as I was so proud to see this because for some time now, I have been communicating with her, and I know parts of her journey and how hard this has been for her. To see these photos is so incredibly liberating. As much as she says that I inspire her, she inspires me–so much that I wish to share some of her photos and will be displaying additional photos on the United Colon Vlog fan page on Facebook. Her husband did an amazing photographic depiction to give the feel of strength and remarkable accomplishment for someone who has been through so much.

Kudos to you, Kate! May you continue to inspire. Thank you for having the courage to share these photos and your story and allowing me to show them. And thank you for being my friend. I know this may have been difficult, but your willingness to open yourself up to others will touch the hearts and lives of so many people across the world. It did for me! You rock, Kate!!

Instead of saying, “I am woman hear me roar” we can restate it to say “I am ostomate, watch me soar.”

Much love,
Nadia

Kate at the top of Mt Edith Cavell after hiking for almost 3hrs. Her greatest accomplishment so far.

Kate at the top of Mt Edith Cavell after hiking for almost 3hrs. Her greatest accomplishment so far.

If you have photos to share, proud moments of you overcoming the challenge of your disease, a huge accomplishment, please email me (Nadia@UCVlog.com) or message me on Facebook so that I can share your story with others. We can all inspire one another. Let me tell your story.

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But still, like air, I’ll rise

October 18, 2011

When this journey began almost five years ago, there was no plan on how this was all going to play out. The doctor did not hand me a life manual and say, “Here kid, this is the book you are going to need to get through the rest of your life. It is the instruction manual on living with IBD. It’s going to tell you everything that will happen to you and how to survive it.” Ha! I wish!!

Like most people, when dealt a blow hearing the news that they now have an incurable lifetime disease, you are not thinking straight. You sit down and slowly digest only the words because you have the worst time trying to digest anything else. No pun intended. I didn’t ask for this. I didn’t stand in line all night waiting for tickets to the “Inflammatory Bowel Disease Show” hoping to get a front row seat. No! But, like so many times in life, the unpredictable happens. Circumstances can rear their ugly head and one is dealt a blow so crushing that puts into perspective many things that pale in comparison on the “this-is-the-worst-day-of-my-life” scale. Forgetting to record my favorite TV show, smudging my nail polish after a perfect paint, not getting my assignments done on time, losing friends, losing love, and watching life pass me by all fall short of having to deal with real life and death decisions, battling severe infections, undergoing numerous surgeries, chronic illness, and planning life around health. Suddenly, you have an epiphany that you truly cannot sweat the small stuff. Time is short and precious; dwelling on the “what ifs”, or the coulda, woulda, and shoulda will eat you alive. Your GI tract is already doing that for you. Try to turn your brain off once in a while or you will become a victim of your own destruction. I know because I do this sometimes.

Welcome to cyber world

I decided when all this began that I had to take some sort of initiative to get my story out there. I chose to put myself in a place where others could learn and benefit from some of the ups and downs I experience through this disease. Since that time, many others have done the same. I won’t say I was any sort of pioneer in vlogging about IBD, I will leave that to Dennis, truly because I was inspired and motivated by him to begin this path. However, I have learned some very valuable life lessons about putting one’s self out on the internet to have others follow you and your journey. One very profound and repeated lesson is that internet is not “real life.” The people know you only from what they see and hear or what you are willing to show them. So with that, you get people who are not always kind or others who are a bit too nice; complete strangers who want to marry me because they have seen my videos and of course they now know me completely to decide that I will make the perfect wife. Ha!

When telling my story, I open the door to telling people not only that I live with IBD but also personal details about my life. One is that I am of mixed culture. I am half Pakistani and half Caucasian. Interestingly, this creates unease in people. Either, I am not Pakistani enough or not American enough for some people, when I think I am doing just fine the way I am. Besides, this has nothing to do with IBD, and for the most part people don’t care about the fact I live my life with a foot in two cultures–I was taught tolerance and a love for two countries and faiths. But, some people have intolerance for things they don’t quite understand, and instead of looking at my message of health, wellness, and how I cope with IBD, the focus shifts to something completely irrelevant. I am told that I should be dragged by my hair back to my country and have my head cut off. I want my head to stay on, thank you very much! I am happy right here in the USA, so I am not sure of which country I am supposed to be dragged back to. I have gotten marriage proposals from individuals-–complete strangers wanting to take care of me–whom have watched my videos and believe that I was the girl slated in life to be theirs. More recently, I was sent a lovely inbox message of which was written partially in Urdu, partially in English. I could understand some but not all. I asked for help to interpret it, but it was so bad they felt uncomfortable telling me the content of the message. “Haters are gonna hate, Nadia,” I was told. Really??? What is there about me to hate or even dislike for that matter?

If you’re going to hate, hate the disease

Well, haters, here is the real truth; this is who you are bullying. A 5’3” 20-year-old girl who weighs almost 120 lbs. (Just the visual alone is enough to pose a serious threat!) I sit at home and watch NCIS and Law & Order while I crochet gifts to give to people, a girl whose phone barely rings because people are busy living life while I am busy getting better and stronger after surgery, a girl who prays every day for things to improve so I have a chance to see what all the fuss is about in the world, a girl who works from home 12 to 15 hours a week at a job that was like a life preserver when I was drowning because all the people I work with understand me better than most, a girl who learns her disease and illness inside and out because I have to try to take control of at least one thing in my life and knowledge is power, a girl who loves shoes, a girl who is waiting to go back to school and for life to really take off, a girl who has taken a rotten situation and tried to do something good about it because I know no other way to exist. Don’t judge me when you don’t know me.

I have a “whatev” attitude about this. If you’re going to choose to hate, hate the disease, not the person. If you choose to hate the disease, there’s going to be a lot more people on your side that will join you in that type of hate! I am inviting you into my life and trusting you not to hurt me. I am just a girl trying to live life with inflammatory bowel disease and not let it rule every aspect of my existence. Now, if that poses a threat to you then so be it. There is a lot more to me than what you see on the internet.

I can’t change the way people think or feel, but hopefully I can educate them about a disease that affects millions of people across our globe–no matter who you are, where you live, the color of your skin, the ethnic make-up of your being, who your parents are, or any other inconsequential thing that has nothing to do with this illness. So, gladly I will take the bad, you can say what you want, and think what you want. “You can love me or hate me, I swear it won’t make me or break me.” It won’t stop me from doing what I am doing because in the end, good always outweighs the evil. I am no one special. I am just Nadia. I just hope that what I do–and continue to do–is of true benefit to others. There are so many of you who make doing this all worthwhile. So yeah, haters are gonna hate, it’s true and there is not much you can do about it. Just remember, what goes around comes around–this is advice from my daddy.

“You may shoot me with your words,
You may cut me with your eyes,
You may kill me with your hatefulness,
But still, like air, I’ll rise.” ~Maya Angelou

~Nadia

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Acceptance

April 17, 2011

By all outward appearances I look pretty healthy. I disguise my disease well. I smile, I laugh, and I enjoy my life as much as I can. But in this heart of mine, I feel overloaded and frustrated with my body, with my health and with the uncooperative way that this disease and I get along. My disease and I are in a constant battle for control. I fight to win, but I am not sure that I will. I don’t win many battles.  In fact, I win very few.  Yet I won’t stop fighting.

When Crohn’s disease became part of my life, it slowly and steadily began to destroy me from the inside.  At each step, I gave into the destruction by taking powerful medications that put me at risk for other issues and problems—but the doctors instructed me that this would make me well.

The next step was surgery. The surgeons removed my diseased colon and rectum when they failed me. I was told that removing these organs would help fix my problem. My waste emptied into a bag outside my body through an ostomy so my insides could heal. They reconstructed my digestive system with a J-pouch so I could “appear normal” from the outside.

I allowed all of this to maintain some level of health in the face of such an ugly disease. Through it all, I tried to maintain a sense of dignity and normalcy, tried to do the things I wanted to do and should do at my age. From the outside there was no hint of internal destruction. Like I said…I disguise it well…

The last hope
That first series of surgeries wasn’t the end of the story. I fought another battle these past two years desperately trying to save my J-pouch. My J-pouch was problematic from the start. Chronic pouchitis, ulcers, bleeding, and running to the bathroom made me miserable.

I was always optimistic that all the problems could be corrected, so I stayed on course for my treatment and did everything I was told to save my J-pouch. I even took the drastic step of going back to a temporary loop ileostomy for a year to save this pouch. I was desperate to do whatever it took to save myself from more surgeries, more trouble, and more meds. All in hopes to get my body back and get it back under control.

But this battle has come to a bitter end. My J-pouch is dead: my fight is over. I will live with an ostomy for life, and have to learn to accept this and move forward. This change is permanent: there’s no turning back. I will forever stay the way I am, and nothing I can do will change it.

It is what it is, and I have to deal with it. But how?

Conflicting emotions
Logically, I can live with an ostomy. I can go through the motions of managing the bag. I understand the reasons behind why I have to live this way. But, for an unmarried 20-year-old girl (speaking only as a female), emotionally accepting my ostomy is more challenging. These mental battles are a completely different set of struggles I need to face.

Sometimes the future overwhelms me. I am thankful that my ostomy will provide a better chance for a healthy life. But what new challenges will I face? Thinking about a lifetime with this ostomy is sometimes a physical and emotional burden. I carry around a secret, not sure who I can share it with or who I can trust.

I have a love/hate relationship with my ostomy. I love the feeling of being healthy, but hate so much about it. I carry around this struggle inside my head and heart. I think about it, this is in one of the worst possible places on the body to have an ostomy. There’s no perfect place for an ostomy, but having it on my tummy is such an obnoxious place to be. I know an ostomy can’t be anywhere but where it is. So, I have to deal.

The ostomy plays with my self-esteem in strange ways. It messes with my head. At times, I feel dirty, unattractive, and digusted with my body. I lack control over so many things my body is doing. Sometimes, I think that I smell bad-and that makes me anxious. It is hard to look at myself in front of a mirror and try to convince myself that this body is a thing of beauty when I only see uglieness in my ostomy. How can I love this when I hate it at the same time???

So many people tell me that I should be so thankful to have an ostomy because it gives me a chance to be healthy but I feel guilty when I am not thankful like I should be—but confession–I sometimes have a hard time being thankful for anything this disease did to me.

Persevering through the doubts
Yet I am thankful. These feelings swirling inside of me; they’re weird. By nature I am very positive, so since this disease did happen to me, I guess it’s a good thing I’m positive. But that doesn’t dismiss the fact that this sucks, and right now I hate it more than I love it.

I go to the store and purchase cute clothes to disguise my ostomy, hoping that by dressing nice I will feel better about myself. It works to a certain degree. Other times, I do things just to prove I can still be active with an ostomy—to give me power over this ostomy—like skiing, or some other adventurous activity.

Acceptance is a gradual process. I have so many goals—marriage, family, and career—and have so much life that I haven’t lived yet. My future holds many experiences, and I imagine each of these will come with challenges to overcome. This journey isn’t over yet.

In time, I hope the positive feelings will outweigh the negative. I will find peace that even though my body dealt me a rotten hand, I played it the best I could. I will learn to accept my body, and all these changes as my new “normal.” I believe I will.

I once thought hope was dead, but in reality hope is all I have left.

“Being happy doesn’t mean that everything is perfect. It means that you’ve decided to look beyond the imperfections.” ~Anonymous

~Nadia

Question: Throughout your journey, what are some things that you have struggled to accept about your illness?

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Another journey begins

October 12, 2010

As many of you have begun to learn, I will be undergoing surgery in the near future to go back to an ostomy. Over the course of the past 20 months of having a J-pouch, I have had very little success with it. At this point the doctors are saying I have a J-pouch failure. Chronic Pouchitis, extensive ulcers, bleeding, numerous infections, anemia, and repeated trips to the bathroom, have made having a J-pouch, not much better than I was before. Nobody could be more disappointed about this new development than I am. Although my doctors have empathy and have shown a great amount of compassion about this, I’m sure they feel a personal let down. At the end of the day, they aren’t the ones fighting this disease, I am. I wake up and go to bed with this every single day of my life.

I understand that life is not full of guarantees and every step in life that we take is always a risk or a chance. I believed back in September of 2008 when the doctors told me to go have the surgery to remove my colon and rectum and get my life back—that was my chance and I took that risk. From the very depth of my heart, I believed in them, in the process, what was going to happen, and I did believe I would truly get my life back.

Throughout the course of these months, I haven’t had a total and complete failure. I have had some good spans of time where things may have been ok, but never quite the way I had idealized them to be. I’m still bound by the bathroom, buried under a mess of medications, restricted diets that limit me with almost nothing to eat, that constant dragging feeling that I never quite feel well, have enough energy, or had enough sleep. So, it has come to this crossroads and in an attempt to save my J-pouch we are taking a radical move of going back to an ostomy. I will be undergoing surgery in November and getting a temporary loop ileostomy for approximately a year. I will live with it in hopes that my J-pouch ulcers can heal and get back on the mend, so that after the year passes, I can have another take down and go back to living with a J-pouch.

Again, this is no guarantee, and this is another big risk. After the year is over, and if the doctors see no major change, I will most likely live with a permanent ostomy. Some may ask how I feel about this. Am I sad? Am I scared? Angered? Frustrated? Outraged? Throughout this whole process, I have been every one of these things and more. However, I am happy for the opportunity to not be strapped to the bathroom, to not be bleeding as badly, to maybe regain some strength and energy, and especially TO BE ALIVE. Maybe, just maybe, be able to be free of some of the medications and be able to have a little bit more variety in my diet without paying for it.

Do I look at this second ostomy as a curse or a blessing? Honestly, I have looked at it as both. But this time around, I’m not afraid of the unknown. I had an ostomy before; I know what it’s like. I’m not fearful of it, but psychologically, mentally, and emotionally it has a different effect on me. I need to come to terms that the physical improvements will be a greater benefit, and I hope that is enough to outweigh my personal emotional struggle that I have going on inside me about going backwards to move forward. I’m sure that I will find the strength to overcome that mental turmoil that I’m feeling. There are no promises that I won’t have a meltdown, or two, or three, or more. But I’ll still go strong, I will still find thousands of things to smile about, I will still fight, and I still believe that one day this illness will NOT rule my life, and I will one day claim it back. There’s still so much fight left in me. I will continue to try to document every step of this journey so, through my struggle, others can learn from my experience. My spirit is strong…my body isn’t.

“Life is either a daring adventure or nothing. To keep our faces toward change and behave like free spirits in the presence of fate is strength undefeatable.” ~Helen Keller

~Nadia

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Take Steps 2010

June 1, 2010

As some of you may know, on May 23rd, 2010, Team UCVlog.com participated in the Take Steps walk in Minneapolis Minnesota at Lake Nokomis Beach. Our team consisted of Dennis and me, my mom, Dennis’ Dad, my brother and my cousin.

The course on the walk took everyone on a 2.5 mile scenic route around the lake. Despite the heat the walk was very beautiful and peaceful. Approximately 1000 walkers showed up to Be Heard. Being a part of this always gives me a sense of belonging and community as we have all come together and assembled for the same reason.

I always go into events like this thinking that I know how things will go down, but when I’m participating and being a part of this event, the feeling far surpasses what my expectations ever could be. I feel like I’m a bigger part of something and that my contribution is really making a difference. There’s a sense of excitement that something good is going to come out of this, and I walk with a sense of pride. It’s a feeling of empowerment because even though I can’t control what happens to my body, doing something like this gives me a sense that I can control a small part of what happens in my future. I can control being active for myself and for this cause and know that my contribution IS making a difference. That in and of itself makes me so excited to be a part of this. I love being proactive and doing what I can.

I encourage everyone to participate in their own way, in their own community and make your voices Be Heard. Seeing all the people who gathered for the walk makes me realize that we don’t have to hide or be quiet. Soon, everyone will hear us, and the louder we get, the stronger we will get. If you are participating in a fundraiser, a walk, or some event that builds awareness for IBD, we want to hear about it! Tell us your story and how being a part of something bigger changes you.

“Unless someone like you cares a whole awful lot, nothing is going to get better. It’s not.” ~Dr. Seuss

~Nadia

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