Welcome to the weekly page! Here you can find archives of past weekly updates, as this program has concluded! 

 

Monday, March 7th- Ashely Mashek (this weekly update will be archived in a “collections of my initial diagnosis” which will be released soon)

I was diagnosed with Crohn’s Disease in 2005 when I was 5 years old. I don’t remember what it was like before being diagnosed. I didn’t really feel positively or negatively to the news, I mean I was 5, I didn’t know what Crohn’s was or that it would change my life in any way. It was much harder on my family than it was to me. I can’t really offer much advice as to what I felt right when I was getting diagnosed but I can tell you how it’s impacted my life as well as my family’s. Getting older and really learning that I had a disease wasn’t the most pleasant for me. I thought I was disgusting and had to keep this a secret from everyone or else they wouldn’t accept me. Let me tell you, that was one of the worst decisions I’ve ever made, I spent years coming up with excuses and worrying that someone would find out about my Crohn’s. It took me around 7 years to tell my friends the truth, and it was like a burden was lifted off my chest, no more hiding, I could be completely honest with them and in turn got amazing support back. If you have been recently diagnosed my biggest advice to you is to not be afraid to tell people, especially your friends, they can turn into that support group that you may need one day. The other thing I would tell you is that having Crohn’s has made me the person I am today, it’s made me stronger, more mature, and more responsible than I would ever be if I didn’t have IBD. I know it might sound crazy to you now but if I could go back and make it so I never had Crohn’s, I wouldn’t do it. I’ve had so many wonderful experiences and I’ve met people who I would’ve never talked to had I not had Crohn’s. If you feel like you’re alone in all this, I can assure you you’re not. There are so many events and organizations that are set up specifically so IBD patients can meet others going through the same thing they are. I would highly recommend looking into it, you never know who you could meet or what you could experience if you don’t take the chance.

Monday, February 21st- Adam Jefferis

Hello everyone, I am excited to say college applications are FINALLY done. Now it’s time to work on all the scholarship applications! I got accepted into all 6 schools I applied to, which are all in my home state of Ohio. The next step for me is waiting to hear back about financial aid and scholarships as this will be a determining factor in where I end up furthering my education. Currently I have started working at a new job bussing tables at an Italian restaurant and I am really enjoying working again now that I have been healthier. I’ve got to say though, it’s pretty surreal to finally be winding down on my high school career, but I’m so excited to be graduating later this year. And for me, having played catch up for most of my high school career, graduating will be especially meaningful. My senior year could not be going better and I owe a lot of that to my good health and to my friends, especially those from Camp Oasis (a camp for kids and teenagers with IBD) that I have kept up with and visited several times since we met this summer. All of the Leaders in Training and Counselors I met there mean so much to me and I won’t forget them or the great times we shared for a long time. I highly encourage any fellow IBDers to check out Camp Oasis and get signed up for this summer, I promise you won’t regret it. I want to give a special shout out to the Cat Ducks (it was our cabin name for Camp Oasis) that I have gotten so close with; Emily, Curt, Chelsea, and Melanie, I love you guys so much and I don’t know what I’d do without you!
Cat Ducks Fly Together!
Adam Jefferis

Are you interested in Camp Oasis? Learn about this life-changing week here: Camp Oasis

Monday, February 15th- Andi Nowakowski

Limitations

January was all about learning my limitations. As the new semester started, my classes got increasingly more difficult. I take the hardest class load my school offers. As if that is not demanding enough, I decided to join the track team. Practices are from 3 p.m. to 6 p.m. Monday through Thursday. Along will all my other activities, I became overwhelmed. I learned that my body could not handle all the rigorous workouts of track. It was hard for me to go home and want nothing more than just to go to bed, but I had to stay up to do my homework. I was falling asleep in class, feeling overly fatigued all the time and basically feeling horrible. It was not until my Crohn’s started acting up that I realized I was overly committing myself to too many things. It was hard for me to use my Crohn’s as an ‘excuse’ for not being able to do something, but I had to realize that my health comes first. Track was the main reason that I started to feel this way, so I talked with my coach. She was very understanding and helped me to work out a schedule that would best fit my health needs. I have come to realize that with a disease comes limitations. Health has always been my number one priority and right now I am learning to accept my limits and learn and grow from them. 

Monday, February 7th- Bethany Purnell

As Valentines Day is approaching, I thought I’d talk about my ‘love-life.’ This is my first post so I’ll start by saying.. Hi I’m Beth! I’m 18 years old and I got diagnosed with Crohns Disease when I was 10 years old. After trying many different medications and those failing, I underwent surgery to remove my whole colon & rectum. This resulted in getting a permanent ileostomy bag in August 2014, when I was just 17 years old.
I have a lovely boyfriend named Lewys. We’ve been together for 6 months and have actually moved in with each other. He doesn’t mind my bag in the slightest. There’s been times where my bag has leaked in the middle of the night and I’ve had to wake him up to change the bed sheet and he always makes sure I’m okay and then he helps me change the bed whilst half asleep. There has even been times where my bag actually fell off during an intimate moment lol. I’m lucky that I’ve found someone who will laugh and then go and clean my poop off himself. LOL. He’s extremely helpful and understanding about my bag & Crohns. Having a bag hasn’t effected my ‘love-life’ in the slightest.
Lewys didn’t know me before I had my bag, but he’s always reminding me to love my bag because if I didn’t have it, my life would be a lot worse and I’d have to spend most of my life on the toilet! Having my bag hasn’t stopped me from doing absolutely anything! I wear tight clothes, I do things other 18 year olds do and I’ve found a handsome, caring, understanding guy that loves every inch of me- bag included.

Monday, February 1st- Ashley Mashek

Hey everyone, I hope you’re all well. For me the school year is already half over, and we just finished our finals a couple of days ago! Also happy late New Year! I can’t believe it’s already 2016. This year my goal is to become more active, or at least make an effort to be. Living with IBD can make me feel like I’ll never be able to accomplish all the things I want to do in life, and I’m sure some of you have felt similarly. Sometimes it just makes me feel hopeless, constantly being sick and missing out on schoolroom work. I always have to remind myself that whatever hardship I’m going through at the moment will pass. However the hardest part for me is the emotional toll living with IBD can have on me. I find myself too scared to go out and do things that I know I’d enjoy because I’m too scared of becoming sick while there or the possibility of my Crohn’s acting up. I know I can’t control that so why am I letting it control me? There’s no point in constantly being scared, yes it’s perfectly fine to be cautious and listen to your body and I’m all for that, but I can’t let my fears stop me from enjoying my life to the fullest I can, well still being safe of course. We only have one life, so we might as well take advantage of it. This year I’m going to go out more, I’m going to go to concerts, and conventions, and travel. I want all of you to do something you know you’d enjoy too, something to make you happy. I want to work on my mental health this year and making more positive moments that I can look back on, and I hope of all you can too.

Monday, January 25th- Curtis Bouchie

The door is closing; I now have less than 100 days of high school. Soon that door will close and a chapter of my life will end. When I think about graduation emotions rush through me uncontrollably all at once, Happiness, achievement, sadness, and gratitude. I’ll be happy because I’ll be able to start a new chapter in my life, college. I’ll feel sadness because I’ll be leaving the school, friends, and people I’ve known for the past four years of my life. I’ll feel achievement because I’ll be able to graduate on time with my class with honors, and with IBD as all of us know that is easier said than done. Lastly I’ll have gratitude because I was able to play varsity baseball. With college coming up I only have one negative, and the negative is all the unknown of college. Not knowing what college I’m going to, not knowing if my major is the best for me, and of course not knowing how hard college will actually be. But for people with IBD there is more unknown. How will living on our own effect our IBD? No more mom scheduling all your appointments or making sure you take all your pills. If you are going to college away from home what will it be like changing doctors and hospitals that you’ve been trusting for so long? Even with all this unknown I’m still excited and ready to jump. Jump into the unknown and see how I do. That is the point of college right? To see how you do when you fly away from the nest and your safety net of home. Nothing I can do now but wait and see standing ready.

Monday, December 21st- Curtis Bouchie

Let’s all take a moment and be happy because finals are over, the past couple of weeks I’ve been studying away. Now I get to take time and enjoy family and the holidays. But what would Christmas break be without a full colonoscopy and endoscopy? This upcoming Tuesday I have my annual procedure that all of us are a custom to. The process I use to prep is using the pills every half hour to fully clear out my system. The bowel prep used to be a really hard problem for me, I took a while to find a stable process to clear me out right before a procedure. The reasons why was Miralax wasn’t powerful enough and that horrible salty liquid they gave I could never fully get down because of the taste. Now though they have pills to do the job and get me perfectly cleared out without the horrible taste of that thick salty solution. Hopefully everything checks out well. Since my last flare up in October I’ve been doing really well. Thankfully I’ve been weaning off the prednisone and feeling a lot better, and now I’m back on my normal regiment of pills. Hopefully after this procedure I’m having I’ll be back on the road to remission. Enjoy the holidays everybody.

Monday, December 15th- Ashley Mashek

Hey everyone! It’s Ashley. I hope you’re all well. My Crohn’s disease has been quite under control recently and all my routine tests have come back normal. I’m extremely grateful for that, however it seems that whenever the winter holidays come around I find myself feeling under the weather and almost constantly getting sick. As most of you know, IBD (inflammatory bowel disease) is an autoimmune disease, causing the immune system to work less efficiently. Because of this IBD patients may get sick much easier. I get sick often and end up missing school or plans I’ve made with my friends or family, this constant cycle makes me feel like I can’t achieve much in life if I can’t even attend a full week of school most times. When my Crohn’s causes me to become sick it also effects my mental health, the way I think about myself or my situation. I find myself believing that I will never be able to do all the things I dream of in the future, such as traveling, starting my own company, or just living a normal life. Sometimes it helps to just step back from everything and remind myself that yes, I may have to work harder to catch up on things or take extra precautions for my health, but that doesn’t mean I won’t be able to accomplish things. I’ve been through so much more with my Crohn’s and I can overcome whatever it can throw at me, and I don’t have to do it alone. There is a whole community of people that have IBD and it’s easier than ever to reach out to each other online. There’s also many meet-ups that are hosted by organizations like CCFA that people can go to. You’re friends and family can also be your support system in all this. Overall it’s important to understand that even with a disease you can accomplish so many things in life and ever hardship you go through makes you stronger in the end.

Monday, December 7th- Sneha Dave

December 7th marks the end of IBD awareness week. This week has been about support and awareness, but we as an IBD community must continue supporting each other after today.

When I created this organization with my late best friend, Cory Lane, three years ago, I had no idea that there were so many people who needed support. I suffered the physical recovery after my major surgeries, but the emotional recovery was incredibly different and new to me. This is the same for many people and teens just like you. 

It is hard to believe that it has been about three years since my colon was removed, and I began a new journey. It is remarkable to look back at the inspiring people I have met who have IBD and similar illnesses. There are millions of people with IBD all around the world, many who are in need of support. The best way to support is to create awareness. 

As this week has ended, I challenge each of you reading this to post or share a fact about IBD with someone. To people reading this update and viewing this website, I hope you are able to find the support that each one of you truly deserve. Please let us know if you would like your story featured or if there is anything you need advice on. We have a full leadership team ready to take questions! From the Crohn’s and Colitis Teen Times to you, we hope you had a wonderful #7daysofIBD. 

Monday, November 30th- Sneha Dave

IBD AWARENESS WEEK starts tomorrow!

Crohn’s disease and Ulcerative Colitis are two forms of Inflammatory Bowel Diseases, known as IBD. There are around 1.6 MILLION Americans with IBD, and yet people are still not aware. These two disease are difficult to talk about due to the often embarrassing symptoms.

I have had Ulcerative Colitis since age six, and I was not able to talk about it for years because I did not know how to tell my peers about it. My parents encouraged me to not tell anyone for fear of bullying, and so in eighth grade I hid a PICC line under the jacket that I never took off at school. Freshman year of high school, I began to open up about my disease more, and I found that the more I explained, the more people understood. It felt amazing to make my voice heard and I began publicly speaking in hopes of raising more awareness and advocacy.

I am a huge supporter of spreading awareness, and although it is hard to talk about it I encourage you to educate someone about IBD. Have a great #7daysofIBD!

Morgan Murray give tips in one of the newsletter archives. http://www.crohnsandcolitisteentimes.com/wp-content/uploads/2015/04/Winter-2014-Teen-Newsletter.pdf

Monday, November 23rd- Adam Jefferis

My life the last few months has been a roller coaster ride. During September I lost around 15 pounds due to Pouchitis, an infrequent result of my J-pouch surgery from the summer of 2014. After starting Flagyl my health is much more stable and I have regained most of the weight I lost. The first quarter of my school year also recently ended which was a big achievement for me, because I finished without any incomplete marks on my report card for the first time in 3 years. Along with keeping up with classes, I’ve also been enduring the college application process. I filled out the Common Application and wrote about my battle with chronic illnesses in my college essay. This took lots of time and effort to feel like I properly explained my story to someone who doesn’t know anything about me. It was definitely difficult to put everything words but I feel pretty good about my end product. If any of you are going through the same thing or will be in the near future, I highly suggest having an unbiased teacher or peer edit and look over it. I’m also willing to give advice or share my writing with anyone who wants any extra help. Once all my applications are finalized and submitted I will be looking forward to college and the new challenges and adventures it brings.

Monday, November 16th- Olivia Earhart

This weekend I had the great opportunity to work a both at a craft fair at a local church of mine where all my booths funds went to Crohns and Colitis! My mother and I are going on our 6th half marathon for the CCFA this February in New Orleans and we need to raise about $4000. The craft fair this weekend was a great opportunity to spread awareness to our cause and it definitely helped with our fundraising. I even met a few people who had Crohns and Colitis themselves, as well as some relatives of those who have it. And of course I met people who have never heard of it. Spreading awareness is one of our biggest missions!

Monday, November 9th- Curtis Bouchie

Lately for me life has been hectic. It’s my senior year and that comes with a lot of responsibilities. There’s SAT testing, AP classes, cap and gown ordering, college applications, and for us special few, dealing with Crohn’s or Colitis. In the beginning of October I did have a slight flare, and like many of us I had to be hospitalized. After a couple days of doctors opening and closing the door to my hospital room, they figured out the special remedy of prescription pills to release me. Since then I’ve been on high dose of prednisone and my cheeks have taken notice. Currently to get through the day without excessive cramping I take Bentyl, this is an as needed drug that’s primary function is to decrease abdominal pain. Puffy cheeks aside though I’ve been able to keep up my daily routine of going to school, doing homework, and flying. Flying is my favorite thing to do, and I’m about a month away from getting my first license. I am looking forward to the future parts of my senior year. There is a lot of exciting parts in a senior year like getting to tour colleges and senior pictures. Hope everyone is staying healthy and continuing the fight with Crohn’s and Colitis.

Monday, November 2nd- Andi Nowakowksi

Hey guys! Andi here. A few months ago, I had the opportunity to meet Sunny Anderson who is not only a food network star, but also an advocate for Crohn’s and Colitis at the Cook for a Cure event in Chicago. She has Ulcerative Colitis and talking with her was quite inspiring. I told her I was a part of the leadership team for this great newsletter and if there was any advice that she would want to give to teens. She said that teenage years are supposed to be about finding who you are. Those of us that suffer from IBD can feel that it captivates our whole life. She said it may not seem like it yet, but one day you will realize how strong of a person you have become because of this disease. The mental toughness young people acquire through battling the everyday struggles of aches and pains is truly admirable. She said to keep on fighting and bringing awareness! Sunny is on social media if you would like to follow her @sunnyanderson on Instagram. 

Monday, October 25th- Sneha Dave

For us IBD patients, dehydration is an invisible factor that contributes to weakness we may experience. It is so important to treat dehydration, because it affects the entire body. Joint and kidney issues are just a couple of the many problems that may arise. Because I do not have a colon, my body has to work twice as hard to absorb water. I can feel when I am dehydrated and so I try to intake even more water at certain times of the day. Every time I wake up at night to use the restroom, I make sure to drink as much water as I can. For me, prolonged periods of time without water can prove to be detrimental to my stamina. If you are in the hospital for some reason and know that you are prone to dehydration, it is always great to mention this to nurses so that you can get extra doses of saline (which ALWAYS make me feel better). My advice if you are dehydrated is to drink fluids with electrolytes, and I have linked the website for vita coco (a more natural rehydration option). Limiting activity is also great, especially if joint pain is prevalent. Please note that if you are to the point of vomiting and feel beyond awful, the emergency room is the best option!

Vita Coco

Monday, October 19th

My Fear with Crohn’s Disease. ~Ashley Mashek

Recently my Crohn’s has been very stable, my blood tests are looking great and I very rarely experience any IBD related pain. I’m so extremely happy for this and I’ve been enjoying it, as I’m sure you can all imagine. The one thing that still gets to me though is fear, fear that any little pain I get could be related to my Crohns and that I’m having a flare up or something else related to IBD. That’s been hard because it causes me to worry and stress out a lot more than I should be about something that probably isn’t even worth worrying about. I always tell myself (and to anyone who is experiencing something similar) that I can’t let this fear stop me, I have to go on with the day and enjoy it. Obviously when something doesn’t feel right or you’re in pain you should definetly go to the doctor and try to find out what’s going on but don’t let that fear of a possible complication stop you from doing whatever you want and achieving your goals. I hope you’re all doing well and this helps some of you out there!

3 thoughts on “Weekly

  1. Andi Nowakowski

    Dear Ashley,
    Like the rest of us teens with IBD, you story could go a lot of different ways. “Good kid catches a bad break and goes into a depressive funk.” You would get a free pass, considering! You are the awesome kid who throws away the hospital gown and gets on with her life without the pity party! It’s natural to be scared but getting involved and staying active makes you concentrate less on being sick. I have never let Crohn’s hold me back from whatever I wanted to achieve academically or athletically. I doesn’t define me. It’s just a part of who I am.

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