Why?

My Endurance Manager for the Dublin team, Angel, asked the members to think about something very important: why? Why am I participating in this race? What's my story? I shared some stuff on the my donation page, but there is so much more to it.

Crohn's Disease practically took over my life up until recently. I had a rough time at the University, I was not getting very good grades for the first two years, and spent the rest of the time just trying to bring my GPA back up. Because I was so worried about doing well and was scared of the idea of not graduating, I did not give myself the chance to truly enjoy my time in college. 

If there is anything worse than the physical limitations of Crohn's, it is the deep isolation and loneliness. While I made some wonderful friends that I still connect with, I did not take the advantage of going out on any given day, or opened up to people to make a lasting impression. I was afraid that being open would make me seem depressing (although I didn't try very hard to hide it), or I would somehow burden people by sharing details about my life. I have been told on several occasions that I am closed-off, and that is why even writing this blog is so difficult for me.  During those years, I developed anxiety and depression, which are very common issues associated with any chronic diseases. 

I can recall one summer when I spent a lot of the time in the hospital. I was out by August, and one of my best friends tried to arrange her birthday party so that I could come. It was supposed to be my first night out in public since I was discharged. A few hours before her party, I suddenly felt anxious about the idea of being in a big crowd at a loud place that I had an anxiety attack at work. A friend picked me up, and took me home. I ended up not going to her birthday, and I felt horrible about it. I missed so many weddings, graduation parties, birthdays, you name it.

I need to mention my family in this post. While I have an amazing support system, my family has been with me since day one. The summer that I mentioned in the last paragraph - well I was stupid, and stopped taking my meds. I stopped eating because I had no appetite, and I was incredibly thin. At the hospital, they treated me for anorexia in relation to Crohn's. I had a PICC line that caused a blood clot (my right arm was huge). I also went through many tests, blood transfusions, eating nasty hospital food (I still don't understand how that garbage helps patients feel better). But the worst part of it was that my family had to suffer all of it, and it was my fault. I never want to do that to them again. That summer is just one example of how much they have been there for me, and words cannot express how much I love them. I still live with my parents (my brother and sister live out of town). I wish I could say that I help out a lot with the cooking and cleaning, but I still struggle to this day to do my fair share around the household due to the lack of energy and fatigue. I try so hard, but always fall short of doing a decent job helping. My family understands what I am going through, but I always feel like I am letting them down somehow. I know that the only person being let down is me. 

Without the Crohn's, I don't believe that I would be the same person I am today. It has given me the compassion and patience to work with kids who have experienced their own traumas. Crohn's has also taught me to be strong and take control over my own life and happiness. While I am not in remission, I am much more healthy and energetic now, and have a more positive outlook with everything. Last, but not least, Crohn's showed me how to love and appreciate everyone and everything around me, and to not take anything for granted. It's like what Rafikki said in The Lion King, "You can either run from it, or learn from it". 

I could go on and tell several stories, but the main thing that I want to point out is that my story is not unique. My "Why" for participating in the marathon is to bring an understanding of some of the things that people with IBD have to deal with. The marathon is for all the times I missed out on important events, for all the times my family and friends were hurting because I was hurting, and for all of the times I fought and still fight the good fight. 

On a final note, here's an update on my training. I didn't exercise much last week because of the colonoscopy (which really sucked), so I am just getting back on track. Today, I went on the bike again.

This was only my second time, and I did strength training yesterday. My plan is to do ST again tomorrow, take a break on Thursday, then back on the bike Friday. I hope to reach a goal of 40 minutes and/or 10 miles. I am planning to go bike shopping this week, because this weather is too beautiful to pass up!

Procedure prep day - blegh!!

I am getting a colonoscopy tomorrow. Before any of you look that up and throw up at the pictures because you did not heed my advice not to search things while eating, let me explain to you what it is. A colonoscopy is a half hour procedure in which the doctor uses a camera to look at the inner lining of the intestines. The purpose of it is to determine how inflamed that part of the body is - aka how active the Crohn's is. It also looks for ulcers, tumors, and polyps that could lead to cancer.

Fact: People with CD are two times more likely to get bowel cancer, and 6 times more likely to get small intestinal cancer. The risk of colon cancer depends on how much the colon is affected by CD.

So it is extremely important for me to undergo a colonoscopy every other year. Surprisingly enough, the procedure itself is not the worst part. Anyone who has gone through any procedure knows that you have to clear the area that is being examined. It is horrendous! I have to start a low fiber diet a few days before, and  the day before (today), I have to be on an all liquid diet - just wonderful for someone who is trying to gain weight - and drink this solution.

Yes, a whole bottle of Miralax with Powerade (did I mention how much I hate Powerade?) I will leave it up to the imagination how crummy this prep feels. A colonoscopy is currently the best way to examine the severity of IBD. However, many people have active disease in areas other than the colon and intestines, so we generally have to take multiple tests. Pill Cams are becoming more common, but they are not as reliable. This is why I am walking for CCFA, so that eventually there will be better testing with more accurate results as well as better treatment options.

First Day of Training.

Last Sunday was my first day of “official” training. I places quotes around official, because I have been exercising on and off for the last year, and lately on a regular basis. However, my goal before was just to gain energy and be healthier. This may seem like a typical New Year’s resolution, but for people with Crohn’s Disease, Ulcerative Colitis, and other forms of IBD, even getting up every day is a challenge. As I have stated in the last post; we also have to deal a lot with fatigue, rapid weight loss/gain, loss of appetite and energy (many people like myself are also anemic), and loneliness. Heating pads and Netflix become our best friends – One thing I can thank Crohn’s for is basically introducing me to “The Walking Dead”. It was a huge challenge to get things started in the gym. That’s why I have a personal trainer to keep me motivated, and it’s helped out tremendously.

Getting back to the topic, because I am underweight, I have been focusing more on strength training. I figure that if I want to be able to walk 13.1 miles in August, I have to start doing more cardio exercises. There is only one problem: I fractured my foot a few weeks back due to a Charlie Brown incident that will only make me look pathetic, so I won’t get into detail. I do have to wear the ugliest boot, which sucks especially during flats season. Anyway, I decided to use the bikes instead. Usually, I only stay on the bike for five to seven minutes so I wouldn’t lose a lot of calories, but I pushed myself. I was surprised with the results, and it can only get better from here!

Yesterday, I did see my personal trainer to lift some weights. I have to take a break for the next few days as I am preparing for a "delightful" procedure on Thursday. More about that next post.

Hello, As Salaam Alaikum, Bonjour, Hola!!

Hi everyone,

Welcome! I am new to this whole blogging thing – yes, I am living in the 21st century – so please bear with me. As my profile indicates, I have had Crohn’s Disease since I was 16. I never heard of it before, so that made everything that much more difficult. For those who don’t know, Crohn’s Disease is an autoimmune disease that attacks the entire digestive system. Symptoms include diarrhea, constipation, fatigue, anemia, joint pain, rapid weight loss/weight gain, nausea, vomiting, and more. Such an attractive thing, especially for a 16 year old. I have taken so many meds, and have been in the hospital more times that If I never have to eat hospital food again, it will be too soon. Through 12 years of trial and error, I have found a regimen that works for me through meds, Traditional Chinese Medicine (acupuncture and herbal tea) and diet. I will get more into that in future posts.

The reason why I started this blog is because I am participating in the Crohn’s and Colitis Foundation’s Team Challenge to walk a half Marathon to raise money for research, trainings, support groups, and other resources for IBD patients. I am hoping that this blog will help not only to reach the goal, but to also get the public to understand what it’s like living with IBD. I will be sharing some personal stuff that I have not been too comfortable in the past. Don’t worry, though, I will leave out the gory details – and for goodness sake, do not look up stuff while you’re eating!

So sit back, relax, drink some herbal tea (or coffee…I do live in Minnesota, home of Peace Coffee), and enjoy. Also, please donate to http://online.ccfa.org/goto/basmah. Thank you! :)