Every once in a while you hear something that no only makes complete sense but also blows your mind.
Have you ever thought about how the song we all grew up with, actually had a much deeper meaning? Add on the extra statistics and thoughts that Youtube sensation Prince Ea includes and it will make you think.
As patients with chronic illnesses, it’s our responsibility to do everything we can to give ourselves the best chance. Yes, we need a great support network around us. Yes, we are going to need help from time to time. But we also need to put in the work and effort to make our lives the best they can be also.
Now this isn’t easy. It takes patience, time, energy, and mental strength to be able to get back up again after our IBD knocks us down. As Prince Ea says, being positive person can help your health. The #1 cause of death is stress and Harvard researcher Sean Achor reports that optimists live a healthier life, recover faster from illness, and live longer.
So, are you waking up with the good intention of living this day to the fullest you can? Or are you waking up worried about how you’ll survive the day? We won’t be able to make everyday great with Crohn’s disease or ulcerative colitis. But it’s important that we do our best to make the good days and even the okay days the best we can.
Want to help others with IBD? You can make a donation by clicking below. It only takes a few minutes and is extremely easy. Any amount helps the IIF and our goal to assist as many IBD patients as possible.
Brian Greenberg’s story with Crohn’s disease and living with an ostomy is a long one. Even longer than the 70.3 miles he completed in his half Ironman distance triathlon last year. Here is more of Brian’s story with IBD.
While we need to raise serious awareness for inflammatory bowel disease, but we also need to have a sense of humor and a little fun with Crohn’s disease and ulcerative colitis as well. If we don’t laugh from time to time, IBD wins and we lose.
So, did you ever wonder about your poop? Of course you have, we all have! Here are 10 facts about pooping in a fun and light hearted video.
We all have goals in mind that we’d like to accomplish during our lives – a Bucket List. A few years ago I started to meet people who were triathletes. Hearing them talk about what it was like to swim, bike, and run then cross the finish line was captivating and intriguing. I asked myself, “Is this possible with my Crohn’s disease and ostomy?” Spoiler alert: the answer is YES.
It was during a solo trip to Vancouver in March that my plans began to form. I spent a couple of days in the gorgeous city doing whatever came to mind. My plan the second day was to wake up, get to the bike store when it opened at 8am, and go for a ride around Stanley Park to see how my rectal area felt after my proctectomy in August 2014. Surprisingly, after 20 miles my backside still felt good and, taking in the scenery, so did I.
After the ride I went to a small café to treat myself to crepes and reflect on the ride. Sitting there, I decided a triathlon of any distance would be my goal for 2015. The sprint distance felt very doable, so I began to consider the Olympic or half Ironman distance. I tend to dive right into athletic challenges and decided I would have plenty of time to train for a half Ironman distance event later in the year.
A 70.3 half Ironman triathlon consists of a 1.2 mile swim, 56 mile bike ride, and a 13.1 mile run in succession of each other. They’re no easy feat, even for completely healthy people. I realized I would have to keep my Crohn’s disease and ostomy in mind during the entire training process. But during the flight home from Canada, I began to plan out how I’d train my body and mind for the race.
Looking back, I’ve realized that the mental challenges of a long distance race maybe be just as hard as the physical challenges. When it comes to doing a race with a disease like Crohn’s or an ostomy, there’s a whole extra set of challenges. I spent night after night planning out each day’s training towards my goal of crossing the finish line.
During my innumerable hours training in the pool, on the bike, and out running, I was faced with constant mental hurdles. The hardest was getting into the pool with my ostomy and being confident that it would be okay. What would happen if I had a leak in the pool? What if I had to change my ostomy during the first transition? What would happen if I had a leak during a long bike ride?
After beginning to train I realized that my Crohn’s disease prepared me for all of this. As I’ve learned over and over again, I have to just roll with the punches and figure things out as I go. One of the most important traits that I have gained from my Crohn’s is that dealing with adversity is not a problem. If I had a leak, if I needed to change my ostomy, if I needed to get off the bike and go to the bathroom, if anything happened, I was prepared to deal with it. My IBD has made me mentally strong, so I knew I could just take a deep breath and then handle whatever needed to be done. With all of the mental preparation that went into the 70.3 miles, I’m happy to say that none of my concerns happened during training or the day of the half Ironman.
The day before the race, everything began to get very real. Walking through the expo center, picking up my packet, and dropping of my bike got my heart rate up. When Challenge Family interviewed me about my 70.3 for IBD triathlon my enthusiasm was boosted. But I made it through Saturday and got a few hours of sleep before the day of the race.
When I woke up around 4am, my body and mind were excited. The adrenaline started to kick in as I got ready. I changed. I made sure I had all my gear. I prepared my hydration and nutrition for the day. This last part was extremely important – I’d trained using specific things that I know my body can handle and didn’t want to rely on the unknown of what was on course.
When I got to the transition area around 5:30am I noticed that the other athletes had much less packed than I did. I took a deep breath and realized that my journey was different. I needed extra hydration and nutrition but I would cross the finish line just like everyone else.
I got my gear ready and walked to the swim start. My heart rate was jacked but facing the start line, I felt a sense of calm to finally be racing. The horn went off and I slowly ran into the water, letting most of the group get ahead of me. The swim was hard. Swimming in the open water of the ocean is completely different than the pool or lakes. I made it out of the swim in about 43 minutes and I was exhausted! At the same time I was extremely happy to have finished the most difficult aspect of the race for me.
When I arrived at the first transition area, from swim to bike, I checked to make sure my ostomy was still on tight. From here on out I had a good feeling the day would be okay. I got on my bike and started the 56 mile bike ride. It went great. I wasn’t too tired from the swim and was strong enough to get through the ride in 3:12. When I got to the bike-to-run transition, I checked my ostomy again. When I realized it was still on tight, I felt ready to take off and confident I’d finish strong.
The run went as smooth as it could have. I was tired and it was hard but when I realized I was on track to beat my goal of 7 hours, I calmed down. Just had to keep my mind and body going. I knew I would cross that finish line.
Everything was spot on until I hit the 12-mile mark. That’s when everything hit me. The emotions of the past year, more than 20 years of battling Crohn’s, completing a half Ironman – it all came to the surface. Reflecting on where I was a year ago – complications from my proctectomy, more pain, a long recovery, and a visiting nurse that checked on me daily, I couldn’t hold back tears. I came much farther than 70.3 miles to get to this finish line.
A year before, at 31, my life was hardly like a typical 31-year-old’s. Every day I had a nurse come to my home to clean and pack my rectal wound. Week after week, we waited, hoping it would get better, but it didn’t. My pride took a blow and my patience was wearing thin. I asked myself daily, “When will this end?”
Now, I was less than a mile away from crossing the finish line of a half Ironman. The emotions became overwhelming. The tears were flowing and I didn’t even try to stop them. I just kept running.
The town of Old Orchard Bay, Maine got closer and closer. I heard friends, family, and an entire community cheering. The finish line was in sight.
I hit the final stretch and made the turn down the red carpet. My name was yelled over the PA system, my friends were cheering relentlessly. I was going to do it. I crossed the finish line strong. I’ve never felt a sense of exhilaration like this before.
My girlfriend ran up and hugged me, telling me how proud she was of my race. She noticed my tears, asking, “Why are you crying? You did it!” I rambled through all the emotions I felt at the end of the race and by the end, we both were crying. It was one of the most emotional moments of my life, one that I will never forget.
In the end, I answered the question I asked myself 9 months prior. It was possible to still do a half Ironman with Crohn’s disease and an ostomy. That I finished stronger and faster than I expected to was icing on the cake. My goal time was 7 hours, and I would have been happy to finish in 7:15. But my time was 6:43. I’m still floating.
The one thing that I would love all patients with IBD to know is that we are still capable of reaching our goals. And they may all be different. A year ago, my goal was to be strong enough to get out of bed after surgery. A little later it was to be able to dog my dog. Then it was completing a half Ironman.
It’s supremely important to remember this: never give up. So much can be done when we aren’t flaring. Every journey starts with one step. Set goal of your own, take that step, and cross your own finish line.
As with many things in life, I expected ebbs and flows with my 70.3 for IBD half Ironman training. It wasn’t likely that I’d have a smooth 8+ months without any health problems. It would have been nice, of course, but it didn’t happens, which is why I’m trying to navigate a little bump in the road, physically and mentally, right now.
This is particularly tough because of how GREAT May was. Over the long journey with my Crohn’s disease, I’ve had to build myself back up to a normal weight and strength but this time was different than the past. My goal was to reach 160 pounds around the end of April, which I succeeded in doing. That was the first time in a long time that I reached that weight. Below are my training numbers from my training in May.
I set a second goal of 165 lbs. for the middle of May, while simultaneously building my cardio strength as well. I hit this goal right on time. By the end of May, I felt stronger than I ever had. I was cycling through my hometown with ease and running 5 miles without feeling exhausted when I finished. It looked like I was going to enter my June training as scheduled, with plans to lose a few pounds to be at my recommended racing weight, making it easier to bike and run during the half Ironman.
While away in Washington D.C. for Digestive Disease Week in May, I felt like a true triathlete – and for one that suffers from IBD, a pretty strong one. Each day I was there I trained around the nation’s capital. It was not only beautiful but motivating for me. I was doing it! I was waking up early every morning and riding around a major city with ease. I had been weaving around the monuments and tourists and seeing all the sites without reaching a point of exhaustion. The video below is a time-lapse from my second ride around the city.
Then June came around and the bumps in the road became frequent. First my mild arthritis started to act up. There were days when I would get out of bed with achy joints and muscles that just didn’t want to do anything. Then my doctor wanted to have me begin to wean off Predisone from 10mg to 7.5mg. This has been the dose that I’ve started to see problems, having more pain and my rectal area becoming a problem. Of course, that’s what happened again, and I had enough pain that it kept me from having the motivation to get out and train. Below is a picture of the bleeding at times that I’m dealing with while I attempt to train.
Don’t get me wrong, I knew something like this was bound to happen. The question I have is how long with it last? As many IBD patients know these diseases aren’t a science. Dealing with them, physically and mentally, is an art and if you don’t play your treatment, rest, and other cards right, things can quickly spiral out of control. Right now, the mental battle with this question is much harder than the physical. After such a great start to the training, I’m having a tough time at a key part of preparing for the 70.3 miles. I should be ramping up my training and getting ready for my preparation races, but instead I’m slowing down.
So what do I do? Part of me says that I should take it slow, forget about the 70.3 mile distance this year and maybe take it easy. This could give my body more time to heal which would allow me to not have to deal with the bleeding and rectal pain at times. Then again, my doctors have told me that with the type of superficial problem I’m having, my level of activity won’t have much an effect on healing.
After hearing that, the other side of me reminded me how far I’ve come. Part of doing activities like a half Ironman is dealing with injuries and health problems. These are bumps in the road that many triathletes who are trying to overcome a chronic disease have to deal with. So I’ve been asking myself, “Is this a normal level of trials and tribulations, or am I pushing myself too much?” I look at a picture like the one below at the Washington Monument and feel so happy that I can even attempt to try to complete the 70.3 miles.
Only time will tell how this will play out, but what I do know is that this training has lead me to feeling better than I have in a long. It has taken my mind off of my Crohn’s disease so much and given me goals to hit. I don’t remember the last time I’ve been this motivated. Maybe it’s because something like this half Ironman is within reach and I know my health is on the right track but I’m afraid to look back now. Whether I will or won’t on this road to 70.3 miles is yet to be written, but whatever happens, I know it’ll be the right decision.
To make a donation to the 70.3 for IBD triathlon, please click the button below.
The IIF will be riding in the Five Boro Bike Tour for the second time in 2014. This ride is for all ability levels and doesn’t require a large amount of training. The 40+ mile ride goes through all five boroughs of New York City, by many landmarks, through Central Park and over many bridges in the area.
For more information on the Five Boro Bike Tour, please click here.
We will be riding again this year to raise IBD awareness, educate those about the diseases and of course to have a good time. The fundraising minimum will be $500 this year. For their efforts to raise IBD awareness, riders will receive an IIF jersey/shirt, IIF water bottle, lunch after the ride and more.
To sign up for the ride, please fill out the form below or click here. After filling out the form, you can begin to create your fundraising page at the link below. For tips on fundraising for the IIF, please click here.
If you are interested in riding or signing up for the ride, please join the Ride’s Facebook page as well. We will be posting updates there as the ride gets closer.
An IIF team member will contact you shortly after you complete the form below. We look forward to cycling with you in 2014!
The IIF is happy to announce Sarah Brocker as the winner of our second Intense Intestines Scholarship. Sarah is an amazing twenty year old woman, who has done everything she can to not let her Crohn’s disease keep her from earning her degree.
Sarah is currently on TPN therapy and bowel rest while she is taking classes at Hanover College. This means she spends all day battling her Crohn’s disease while not eating anything. Then at night hooks herself up to an IV to receive all of the nutrition her body needs directly into her bloodstream.
We believe that Sarah is an inspiring role model for other college students with Crohn’s disease or ulcerative colitis. The IIF knows that she will set an incredible example for other young adults in the inflammatory bowel disease and ostomy communities.
Below is the video submission Sarah sent to the Intense Intestines Foundation to complete her application. She discusses her life with Crohn’s disease, how she is determined to finish her degree and that she will Never Stay Quiet.
We are happy to have Sarah as part of the IIF family. In order to help other young adults with IBD and/or ostomies we need your help. Please consider a 100% tax deductible donation today.
Bob Baker is a true inspiration. He’s battled ulcerative colitis for years, lives with an ostomy and also is a cancer survivor.
Here is just a portion of his story, which he shared with the Intense Intestines Foundation for our Never Stay Quiet campaign.
Never Stay Quiet!
To help others with Crohn’s disease, ulcerative colitis and ostomies, please click the link below and make a contribution to the Intense Intestines Foundation which will allow us to continue our mission.
We were happy to have Sara Ringer of Inflamed and Untamed attend the 2nd Annual Climb for Crohn’s & Colitis this year. While she was in our neck of the woods, we were happy that she offered to share her IBD and J-pouch story with us for our Never Stay Quit video series.
Sara is a perfect example of our Never Stay Quiet motto, as she is an amazing advocate for the IBD community. Her work is tireless and Sara loves to help as many people as possible with Crohn’s disease and ulcerative colitis. Sara’s Youtube page has over 50 videos on various topics to help those with IBD.
In the video below Sara discusses her diagnosis, how she deals with her IBD, what the words Never Stay Quiet mean to her and more.
On May 5th a team of 4 riders and President of the IIF Brian Greenberg, rode 40 miles in the NYC Five Boro Bike Tour to raise awareness for Crohn’s disease, ulcerative colitis and ostomies.
The ride totaled 40 miles and went through the Bronx, Queens, Brooklyn, Staten Island and Manhattan. Riders got to cycle through Central Park, down the FDR Drive highway, over major bridges such as the Verrazano and by many more New York City attractions.
Our team of riders raised $1,000 to assist with IIF programs and help those with these diseases. The IIF can’t thank them enough for their efforts to help those with IBD and ostomies.
Cycling the Big Apple for IBD and Ostomy Awareness Video
May 18th was another great day for the IIF. We held our 2nd Annual Climb for Crohn’s & Colitis event at The Rock Club. This year was exciting for us as Sara Ringer of Infamed and Untamed flew to the New York City area to help the IIF raise IBD awareness for World IBD Day.
At the event we had more people with IBD attend this year. We were happy to see others show that it is possible to live a normal lifestyle at times with these diseases. It wasn’t easy as many of them were battling during the day, on medicines or even not eating at times in order to attend. The fact they didn’t let their IBD keep them from attending is an amazing accomplishment.
The Climb for Crohn’s & Colitis this year raised almost $2,500 to help those with IBD and ostomies. IIF programs such as the Intense Intestines Scholarship continue to grow due to support from events such as these. As the IIF continues to grow we’ll always look for ways to assist those with these diseases.
2nd Annual Climb for Crohn’s & Colitis World IBD Day Video
We’d like to especially thank The Rock Club for allowing us to use their great facility, Shawn Kapitan of DTE Photography for documenting the event, Sara Ringer of Inflamed and Untamed for helping us raise IBD awareness, all of those that donated items for the raffle and everyone else that helped us make the event a great success again this year.
All of us on the IIF team are already looking forward to the 3rd Annual Climb for Crohn’s & Colitis next year. We have some great ideas which are going to make the event even better than the last two. Mark your calendars for May 17th next year now and we look forward to seeing you at The Rock Club for another great event.
Hello I.I.F. Supporters,
As many of you know, I suffer from severe Crohn’s disease and have an ileostomy. The journey of my life so far has not been the easiest, but I believe in living life to the fullest and not letting my disease get in the way of that goal. Now, I want to impart what I have learned about overcoming the obstacles in my path to live as normal and active a life as possible to others with IBD conditions.
I’ll be hiking/climbing the 46 High Peaks in the Adirondacks with a goal date to finish the highest peak on October 6th, World Ostomy Day. Completing the 46 mountains isn’t an easy task as the terrain on many of them is very challenging. Add to that my Crohn’s and ostomy and some would say it’s a crazy feat, but it’s one I’m ready to conquer. My hope is to show others that with the right planning and preparation, a person living with an IBD or an ostomy can do anything.
Please help me reach my goal of raising $4,600 for the Intense Intestines Foundation to help raise awareness andcreate the Intense Intestines Scholarship. All proceeds will go towards helping others with Crohn’s disease, ulcerative colitis and ostomies. If you contribute $100 or more, I’ll dedicate a summited peak in your name as I complete all 46 mountains for each $100.
Thank you for your support and help in this exciting project to help others with IBD and ostomies know that anything can be accomplished and to Never Stay Quiet.
Brian Phillip Greenberg
Currently Completed Peaks: Porter Mountain (4059′), Cascade Mountain (4098′), Esther Mountain (4239′), Whiteface Mountain (4865′).
No peaks have been dedicated yet.
Leave Brian a comment:
In recent days we’ve seen many posts about the new Escape the Stall campaign by the Crohn’s & Colitis Foundation of America. Social media sites have been buzzing about the campaign and many people have been sharing their feelings about the pictures the CCFA has released to raise IBD awareness.
Influential people in the IBD community like Jessica Grossman of Uncover Ostomy have written about the campaign (Click here for Jessica’s post) and Sara Ringer of Inflamed and Untamed wrote about it as well (Click here for Sara’s post). To many people to count have commented on these two posts and other posts on various Facebook pages or Twitter accounts, all sharing different and varying thoughts. Most people in the IBD community seem to be viewing the campaign in a negative way.
We made this short video with the pictures from the Escape the Stall campaign.
These pictures have been seen in movie theaters, magazines, newspapers and other areas to raise IBD awareness. We’d like to know what you think and hear your thoughts. Please feel free to leave a comment and start a discussion on the topic here or on our Youtube page. It might be good feedback for the CCFA.
Never Stay Quiet!
Sometimes there are just things that aren’t right in society. Some of them we can’t do anything about, others though we can have a voice and make changes. The other day I was at a local sports bar in Norwalk, CT and when I went to the bathroom there was no door on the stall. As an Inflammatory bowel disease patient for the last 20 years and one who lives with an ostomy now, I was amazed to see this. How could an established sports bar like this one not have something as simple as a door on their stall?
I took a moment to think about while I was there. Being someone who is extremely comfortable with my ostomy I had used it. My thought process was that whoever might walk into the bathroom right now will just get a lesson in ostomy awareness. It might just be another chance for me to bring awareness to the cause.
As I was sitting there doing my thing, I began to think about all the other people in a similar situation as me or how about just regular people who might want a little privacy when they use the bathroom. As a Crohn’s patient I thought about all my IBD friends who wouldn’t be comfortable with this. What about those few that have an ostomy who don’t wish for others to see it, how are they supposed to handle this situation when they need to use the bathroom?
This is something that any person might not know about until it’s to late. They would get to the restaurant, eat a good meal, all of a sudden have the urge to go, get to the bathroom and have no choice. Someone with Crohn’s disease or ulcerative colitis wouldn’t have a choice. When the urge hits, you have to go and many times you have to go at that moment. Sometimes without even enough time to get a friend to watch the door for you if you aren’t comfortable.
Needless to say I’m writing a letter to the owner of the restaurant. This situation is something that shouldn’t be a situation at all. How can a bar not have a door on their stall? I understand that if it were a straight bar or club trying to be trendy, or maybe that will deter people from making a mess, doing drugs, or using the bathroom in any other way that it wasn’t meant for. But what about the rest of us, the 99% of patrons that just might need to go to the bathroom and would like a little privacy.
I will let you know the outcome of writing management and the owner. This is a perfect example of how we should…
Never Stay Quiet!
Many activities can look scary when having an ostomy. Some of them are and precautions have to be made. You should only partake in many activities if they are in a safe environment. Skiing is a sport that some ostomates stay away from. There are so many factors and variables that go into a sport like skiing or snowboarding that it can be intimidating
These winter sports that so many love can be done with an ostomy and enjoyed. The most important thing to remember is that they must be done when your body is strong. If you’re uncomfortable with your body, then an activity with as much motion as skiing or snowboarding is hard. When you body is strong, you can begin to think about going for a trip.
When planning your trip there are some factors that you must think about. Here are a few.
1) Conditions: You don’t want to ski or ride when the conditions are tough. If the mountain is full of ice and the chances are higher than normal for a fall or accident, then it’s not worth the risk.
2) Weather: If you aren’t going to be comfortable on the mountain then you won’t perform well. This will raise the chances of something happening and possibly falling. If the weather is going to be 10 degrees with 40 mph winds, STAY AT HOME.
3) Friends: Unless you’re an expert and are at a mountain you know, you should be skiing with friends who know you. Being with people who know your situation will make you more confident and allow you to ski/ride better.
4) Stay Hydrated: When performing heavy activity in cold weather your body has to work hard. You might not sweat but your body is still losing moisture. Wear a hydration system and stay away from beverages that will dehydrate you.
5) Use Common Sense: No one knows your body better than you, so make a smart decision on if skiing or riding at this time is correct. If you have any doubts, then it’s not the right time. Wait until you know the timing is right.
Performing certain activities with an ostomy can be scary, but most if not all activities can be done with the right planning and preparation Founder of the IIF Brian Greenberg went skiing last year. Here are some thoughts Brian had on his first trip since surgery.
“I waited until the time was right. My first winter with an ostomy was great, but I was nervous. I spent the winter snowshoeing which still allowed me to enjoy being outside. Last year the season on the East Coast was not the best. The conditions were icy and even though I was strong, I didn’t want to risk falling on my stoma. Later in the season the mountain began to get snow, a lot of snow. As soon as the conditions were going to be soft, I began to make calls and plan a trip. I was lucky as a friend has a house I could stay at. This made me even more comfortable since I knew I had all the comforts of home at the end of the day. The two days were great, I skied most of the time in powder and never had a worry in the world. I fell twice and it was like nothing happened. The trip gave me more confidence that my body was getting stronger and I could do what I loved again”
This shows you that when the timing is right with your body, you still might have to wait till other factors are right too. Brian was smart and his patience paid off, which allowed him to ski without worrying about anything happening. Take your time and when it’s right to go skiing o riding for the first time, you’ll know it.
Never Stay Quiet!