We are very excited about this episode of the #WeWillBeatIBD podcast. The IIF’s Brian Greenberg had the honor to interview Brandi Chastain of the Olympic gold medal winning soccer team and the World Cup winning teams as well.
They discuss her son Jaden’s newly diagnosed Crohn’s disease, how they are tackling the challenge as a family, and the IBD game plan that they have put together. There is a lot of good advice in this episode, especially for the caretakers out there who have a child with IBD.
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In episode 11 of the #WeWillBeatIBD podcast the IIF’s Brian Greenberg discusses how Crohn’s disease and ulcerative colitis are not what so many believe them to be, they aren’t just bathroom disease. In reality Crohn’s disease and ulcerative colitis have an endless list of symptoms that impact a patient both physically and mentally.
This is why the Intense Intestines Foundation created the #BeyondtheBathroom awareness project to show patients that they are not only alone but also to show other that IBD isn’t about just having a week stomach. It’s so much more!
The IIF’s Brian Greenberg brings you another episode of the #WeWillBeatIBD podcast and our IBD Tip Tuesday series. This is where Brian talks about IBD and gives quick and to the point advice on how to live with Crohn’s disease and ulcerative colitis.
In this weeks episode Brian talks about how he prepared for emergencies with Crohn’s disease and an ostomy. He always had two bags packed with a variety of supplies to be ready for anything IBD related. Want to know what he puts in the bags? Listen to IBD Tip Tuesday now!
Fact: Crohn’s disease can affect the entire gastrointestinal tract from mouth to anus. Understandably, people don’t talk much about one of the most painful symptoms that can accompany Crohn’s: anal fistulas. For most people, these are very difficult and embarrassing to discuss, as they can result in bleeding, infections and the loss of control over one’s bowels.
What are anal fistulas?
According to the Cleveland Clinic:
The anus is the external opening through which feces are expelled from the body. Just inside the anus are a number of small glands. If one of these glands become blocked, an abscess—an infected cavity—may form. An anal abscess is usually treated by surgical drainage, although some drain spontaneously. About 50 percent of these abscesses may develop into a fistula, in which a small tunnel connects the infected gland inside the anus to an opening on the skin around the anus.
These anal fistulas which normally start with an infection can cause:
In layman’s terms, the infection — which builds up and is normally very acidic and corrosive to the body — eats its way through the tissue to the outer regions of the skin around the anus. For women, it can sometimes even lead to vaginal fistulas.
I’ve dealt with many abscesses and fistulas because of my Crohn’s disease over the years, but I tried to ignore my first abscess, which occurred during my freshman year of college. I had all the symptoms listed above; it felt as though a water balloon was growing inside of me. I still went to class when I could and, to be honest, didn’t really know what was going on.
That is, until one day the fistula decided to pop in the middle of class and an enormous amount of infectious material flooded my pants. I was able to feel it, so I decided to not get up until everyone else left the room. I knew something bad had happened and ran across campus to take a shower, then lay face down on my bed to relieve the pain.
One of the most difficult problems that a patient has to deal with when anal fistulas begin is the pain. It is constant and there are only a few things you can do in order to temporarily relieve it. Warm baths help, but you can only stay in water for so long. Creams can help, but they wear off and most stop working soon after application. At one point I even tried to rest on my bed with a fan blowing on the area to cool the burning feeling. It didn’t work for as long as I’d hoped.
How are fistulas treated?
Surgery is often required and is performed by a rectal and colon surgeon. The surgeon will relieve the infection and then assess the situation. After surgery, there are a few options.
A fistulotomy, where doctors take skin in the surrounding area and try to cover up the fistula’s tunnel.
Other times they will place plastic or surgical thread setons through the fistula. This will keep the track open and, it is hoped, allow it to heal as there will be less chance of an infection building up. Setons allow the fistula to drain and possibly health without cutting the surrounding muscles. These can be left in for more than six weeks at a time, and the patient is advised to take regular baths while moving the seton if possible.
If there is no active infection and the fistulas are kept under control, a surgeon might elect to try fibrin glue which can fill up the fistula like a plug. This is only an option when there are no infections and tissue damage has been controlled.
My experiences with anal fistulas have been extensive. After getting my ostomy, I did have a break from the pain since I wasn’t having normal bowel movements anymore. Still, the rectal disease didn’t go away and four years later I decided to have my ostomy made permanent and have a proctectomy to have my rectum removed.
In the end, anal fistulas aren’t talked about enough when it comes to Crohn’s disease. Everyone thinks it’s a stomach disease but it goes far beyond that — and it goes far beyond the bathroom. Fistulas are one of the most painful and difficult aspects of this disease to deal with. It’s important that we address and talk about allaspects of Crohn’s disease. By discussing such issues, it makes us more aware and more able to deal with problems when they crop up. Crohn’s affects patients from mouth to anus — a reality that should not be ignored.
Recently I was asked to read a book called The 12 Week Year by Brian T. Moran, and it has changed my life. The book is not about changing your life if you live with a disease; it’s generally about life management and sales. Nonetheless, I still found many of the tips and challenges it presented useful in managing my inflammatory bowel disease (IBD).
The premise is pretty simple. You create goals for yourself that you would like to reach in a 12-week period. These goals aren’t as large as those that might take a year to accomplish — but that is the point; they are reachable goals. At the end of every 12 weeks, you are allowed to take a break and reflect on what you just accomplished, adjustments you might need to make, or what you’d like to do next.
I sat down and thought about areas of my life that could be improved with this tactic with my Crohn’s disease. What areas could I make better? What areas could I make easier? Can my quality of life improve that much? Without doubt, the answer is — yes.
It’s not easy, and it will take time to implement. Generally it takes two to three “12-week year” cycles in order for your mind and body to grow accustomed to habits and rituals. But if your life could be better in three months, then six months, and then nine months, wouldn’t you want to give it a try?
Soon we will be starting the #TakeThatIBD 12 Week Challenge. Stay tuned for more information soon. But for now, here are some ways you can begin to change your life now.
Below are three areas in which you can improve your quality of life with IBD 12 weeks at a time. If there are other areas of your life that you’d like to improve, make a plan and tackle those, too.
There are a lot of research articles, diets, and more out there about how nutrition can impact Crohn’s disease and ulcerative colitis. Diet and nutrition are not a cure for IBD — but for some patients, the right diet can help manage their IBD a little better.
As patients, it’s our responsibility to educate ourselves. Do some research on various diets and nutrition from trusted resources. (Note: Tree bark and aloe juice don’t cure IBD.) Begin to try some of them out. Keep a food/pain journal and figure out what works for you. You’ll figure out which clean foods give you energy and make you feel good. You’ll also find what foods don’t agree with you and make you feel sick.
Once you’ve done that, create your own diet that you’ve found works with your IBD. Then implement it into your 12-week year.
Being physically active is not easy with IBD. In fact, it can be extremely difficult at times. After a flare or a surgery, the last thing many of us are thinking about is how to get active. But have you ever gone on a walk, jog, to the gym, or done another activity and felt better for a little while afterward?
This is because physical activity balances your body out and allows it to function in a more normal way. Humans weren’t meant to sit on the couch all day, watching TV — or to sit for hours in front of a monitor at work, for that matter. We were meant to get out, be active, hunt for our own food, and be healthy. While it is true that humans have evolved from this method of obtaining food, with smaller teeth, jaws and faces, experts can agree that healthy diets and movement are still important to healthy body function.
So take some time and create an activity plan that you can stick to for the first 12-week period. Make it easy, and this way you know you’ll reach your goals. After that, begin to bump up the activity a little more. You might be surprised about what you can do with your IBD and also how much better you feel.
Mental health is an extremely important part of our lives. When you throw in a chronic disease like Crohn’s or ulcerative colitis, it becomes an even larger part of our lives. It’s easy to let IBD win, get you down, and keep you from living the life you’ve wanted.
This is why we need to focus energy on our mental health. There are many things that you can do in the comfort of your own home to help with this crucial area of our lives. Yoga, breathing techniques, meditation, and many more mental exercises can be done right at home.
If needed and you have the ability, you can also speak with a professional to open up and get some weight off your shoulders by sharing what is really bothering you. This can make a huge difference and lead to changes in other areas of your life as well.
Create a list of things that you know you can do for your mental health, and add them to your 12-week plan.
So what do you think? Are you already thinking about what kind of changes you can make in three months? Let us know in the comments section below what you’ll be working on, what goals you’ll set, and how you think your life will change, 12 weeks at a time.
In this weeks episode of IBD TIp Tuesday on the #WeWillBeatIBD podcast the IIF’s Brian Greenberg discuss the importance of hydration with Crohn’s disease and ulcerative colitis, how it impacts the body, and give 3 easy to follow suggestions on how to make staying hydrated a little easier.
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Welcome to another episode of the #WeWillBeatIBD podcast and our new series IIF Friday where we will be discussing a variety of topics on the IIF mission, programs, events, awareness projects and more.
In this episode the IIF’s Brian Greenberg discuss the IIF mission and one of the IIF’s main programs the IBDebt grant, which helps Crohn’s and ulcerative colitis patients with financial debt.
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What is the best medicine for Crohn’s disease and ulcerative colitis? It’s hard to find at times but simple at the same time. It’s having a positive mindset.
IIF Founder and President, Brian Greenberg discusses how having a positive attitude can change everything when taking on the challenge of IBD in this week’s IBD Tip Tuesday edition of the #WeWillBeatIBD podcast.
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On Sunday, May 7 2017 the IIF will be riding for the fifth time in the Five Boro Bike Tour around New York City. This ride is for ALL ability levels and doesn’t require a large amount of training. The 40+ mile tour goes through all five boroughs of New York City. The course takes riders through Central Park, across several of New York’s iconic bridges, and by many of the city’s beloved landmarks.
This year we will have three fundraising levels for the ride. There will be local, regional and national fundraising.
Local Level -Fundraising requirement will be $700. This is for riders living in the NYC tri-state area who do not need any accommodations for the ride and will be coming in the day of the Five Boro Bike Tour.
Regional Level – Fundraising requirement will be $1,700. This is for riders that live in the northeast for whom the IIF will provide hotel accommodations for the weekend in NYC for the Five Boro Bike Tour.
If you are traveling alone you will be rooming with another IIF rider of the same sex. If you would like to purchase the entire room, you will have that option to room alone.
National Level – Fundraising will be $2,500. This is for riders who live outside of the northeast for whom the IIF will provide hotel and flight accommodations for the weekend in NYC for the Five Boro Bike Tour.
If you are traveling alone you will be rooming with another IIF rider of the same sex. If you would like to purchase the entire room, you will have that option to room alone.
This does not include the event’s $89 registration fee. If there is a need to opt out of the ride for health reasons, you will have that option till Wednesday, February 15th.
For their efforts to raise IBD awareness and help the IBD and ostomy communities, each biker will receive:
IIF We Will Beat IBD shirt,
Cycling the Big Apple for Crohn’s & Colitis medal,
IIF water bottle
Breakfast before the ride
Lunch after the ride
Each participant is asked to raise the minimum amount for the fundraising level for which he/she registers to benefit the IIF and help those in the Crohn’s disease, ulcerative colitis, and ostomy communities.
We will update this page with more information on the ride and the Intense Intestines Cycling Team for this year’s Five Boro Bike Tour as the event gets closer. Please visit this page periodically for updates or our event page on social media by clicking here.
We look forward to having you join us this spring to raise awareness and show others that together We Will Beat IBD! Join our 2016 team and enjoy this amazing day around one of the greatest cities in the world!
IIF Founder and President Brian Greenberg was on a mission this fall. Complete over 100 miles of races to benefit patients with cancer, Crohn’s disease, and ulcerative colitis. This past Sunday on November 6th, he completed that mission by crossing the finish line of the New York City marathon.
His goal was to complete a 70.3 half Ironman, a half marathon, and then the NYC marathon to push him over the 100 mile mark. This benefited the Intense Intestines Foundation and the Jimmy V Foundation for Cancer Research.
It wouldn’t be easy completing such a feat for a healthy person. Brian completed it with his Crohn’s disease and ostomy. He says:
“Don’t let your IBD control you. Set small goals and then go after them. Celebrate each victory. Before you know it, you’ll go much farther than you ever would have imagined you could.”
Living with Crohn’s disease isn’t easy, in fact it can be a daily battle but with the right mindset and determination, so many things can still be done.
So Brian asks:
What would you like to do? What do you think you would have done if you didn’t have IBD? Now write it down, figure out a plan, and go after it! You’ll be happy that you at least tried.”
The day in Brian’s own words:
Wow, I completed the NYC marathon. All 26.2 miles of running, jogging, and walking to cross the finish line. I will be the first to say that it wasn’t easy. That it was extremely hard and at times, very painful. But the feeling I got when I began to head down 5th Avenue, through Central Park, and across the finish line was worth every second of the pain.
The day started at 5am. Getting up, stretching, and getting all the nutrition that I would need ready to go for the race. This goes into the planning and preparation that I always talk about when doing anything to over come my Crohn’s disease and ostomy. Healthy people still have to plan and prepare for a day like this but as a patient with a chronic illness, there are even more things that need to be considered when completing an endurance race.
Once I got all my nutrition ready and went out to meet my friends for the day, we headed down to the Staten Island Ferry in downtown NYC to get over the starting village and get ready for the day. This wasn’t even that easy. There were large crowds and they moved very slowly. This could be nerve wracking for anyone, but I took a breath, and knew that there were bathrooms around. I’d be okay and I had friends around which made it easier too.
Once over to the starting villages, there was a little bit of waiting until our starting time was called. I ate a little bit, drank some water, and stretched to get ready for the day. The waiting was one of the hardest parts. At this point all I wanted to do was run. It’s been about 4 hours since I woke up and I wanted the race to start.
Finally it was time to get ready and head to the starting line. The national anthem was sung, the announcer let us know a few things, and the BOOM the cannon went off. I was starting to run the NYC marathon. Going over the Verrazano Bridge, overlooking all of Manhattan and seeing the skyline with thousands of other runners was amazing. The energy was almost too much to handle and I had to slow myself down to not go too fast at the start. If I was going to finish I would need to pace myself right from the start.
Once over the bridge, I entered Brooklyn and was immediately taken back by the amount of people cheering all of us on. The funny and encouraging signs, the yelling and screaming for all of us, they estimated that over 1,000,000 people came out to see the runners wind there way through NYC. The first 8 miles went by in what felt like an instant. I saw my first friend cheering me on at mile 9. She told me I was just behind my friends which shocked me. Part of me wanted to try to catch them but I knew it wouldn’t be smart.
I continued to run my race. Just staying with a pace I felt comfortable with and one that I knew I could run at for a long period of time. before I knew it I was at the 13.1 mile mark. Half way done and I still felt strong. I was on a pace that was just a hair slower than I would have liked but not one that I was disappointed about. I set multiple goals out for myself this way I would not be disappointed if anything changed.
I ran over the Queenboro Bridge and entered Manhattan again. This is when things got really fun. Right away I was able to see my fiancee, her sister, and another friend. It gave me some much needed energy. I was about 16 miles in now and still had another 10 miles to go. Running down 1st Avenue was one of the coolest part of the race. I saw multiple friends as I ran all the way up to the Bronx and almost to Yankee Stadium. Each time hearing my name yelled from people I knew, gave me more motivation to keep going.
I reached mile 19 and things began to hurt. My feet, my knees, my entire body started to give up. Knowing where I was became disappointing. Yes, I only had 6 or 7 miles now but I was so close to Yankee Stadium and the finish line was all the way at the south side of Central Park. I decided to walk .1 miles and then jog .4 miles now. This would be my plan to finish the race. It was going well and I felt that I was going to finish in about 4:50 or so. Just under my 5:00 goal.
At mile 23 I hit another wall though. The course headed down 5th Avenue and it was in the shade, the sun was going down, and it got very cold, very quickly. My body tightened up and before I could try to get my body moving again, I knew it was too late. It was an easy decision to walk for a while because I knew that I wasn’t going to finish in under 5 hours now. My goal now was to just cross the finish line which I knew could be done.
I took a moment to take it all in. Some people would be upset that they were walking, not finishing strong, or making the time they wanted. I was fine with walking, just taking in all the people cheering me still. Yelling go cross that finish line to me, even though I was walking. They all knew it was mile 23, 24, 25 even. I had every right to be tired and just finishing is still an accomplishment.
Entering the park and everything turned green, orange, and red. Fall colors surrounding me, with views of skyscrapers through the trees. While I was hurting at this point and every step killed the soles of my feet, I was going to finish the NYC marathon. Just three years ago I was rolling around a hospital bed and didn’t have the ability to even walk much. Now I was going to be a marathon finisher.
I was about to get to the south side of Central Park when I made the turn onto 59th Street. A gust of wind hit me and I felt like I was skiing. I looked down and basically told my feet that it was too cold to walk, that I had to at least jog. One foot in front of another, and I began to slowly move forward again. All of a sudden I heard “BRIAN GREENBERGLER” my friend Dennis was cheering me on, so close to the finish line too. I got a quick picture and kept jogging. About 15 to 20 steps later, “BRIAN! I LOVE YOU! KEEP GOING” it was my fiancee and her sister. I gave them a quick hug, told them I loved them and headed to the finish line. Only about .5 a mile to go.
The flags of ever nation were surrounding me, I saw the grandstands filled with a good amount of people still, I was going to finish the NYC marathon. It almost felt like my body went numb, for a short amount of time the pain went away, my feet didn’t hurt as much, my medal was just passed the grand stands. It was over, I took one more step and crossed the finish line, looked around, and took it all in. Knowing that I accomplished something that was hard for even the healthiest of people, I didn’t let me Crohn’s keep me from anything. I can now call myself a “Marathon finisher”.
Here are some highlights from the final race of the fall for Brian! Click on any image to see more.
Recently, I was walking my dog around a park and saw a group of kids running around a merry-go-round. There were multiple times that everything was going smoothly, kids were running properly, and it was moving fast. Then, there were a few times when the merry-go-round came to a stop and it was incredibly difficult to get everything going again.
This made me think about how I’ve lived with Crohn’s disease since I was 11 and how I’m managing my IBD now. It always seems like once I get my body moving and keeping a good routine, everything feels better. When a flare hits or when I get lazy, everything seems to head downhill. There are times when people ask me how I keep moving and doing so much with my Crohn’s disease; well, it’s all about keeping my merry-go-round moving, and when it comes to a stop, getting back up and getting it moving again.
Many times a flare can cause our entire lives to get turned upside down. We don’t know what to do and we try everything we can in order to get things back to normal. This is usually an uphill battle and one that almost feels impossible to catch up on. Same thing happens when we don’t take proper care of ourselves: our bodies hurt more, the arthritis kicks in, fatigue keeps us from going out, and the quality of life is generally low.
This is why I have always told people to do everything you can to live a healthy lifestyle for your IBD and give your body the best chance it possibly can in the fight against your IBD. When you do this, you can gain momentum and things have the ability to improve. It’s true that this take a lot of work, but isn’t our health worth it?
When you keep a routine and your body is able to have some level of stability, your health has a better chance to improve. This helps the momentum work in your favor and shows how IBD can almost be like a merry-go-round. Once you put in a large amount of work to get things moving in the right direction, it can take less energy to keep things going. Once everything is working in our favor, all we have to do is get off and run a little bit with minimal pushing to keep things going smoothly.
With a good routine, things can improve and then we just have to stay on track. This is almost like running along side of the merry-go-round, which allows you to keep it going with less effort. Once you find a routine that works well with your body, add it to your life and make it mandatory. You’ll find that it allows you to do more.
For me, this is broken down into three categories: diet, physical, and mental.
Diet – Now I’m not saying that diet is a cure for IBD. It’s far from it! But if we eat healthy foods, we’ll naturally have a better chance at living healthy as well. Eating the proper amount of calories with the right nutrition can’t hurt, right? Staying hydrated with low sugar beverages can’t hurt, right? Eating well overall can’t hurt your IBD, right? So why not give it a try? We all have to find our own diets and sometimes it might be taking a combination of all the diets out there that help with inflammation. But when we find something that might work, it can’t hurt to stick with it.
Physical – In order to keep my merry-go-round moving, I have to keep my body moving. Now there are morning when I wake up and my body doesn’t move. The arthritis causes too much pain and just getting out of bed hurts. But on mornings when I feel a little energy, mornings that my body doesn’t hurt quite as much as it can, I have to workout and give my body the best shot. This normally includes a morning workout with swimming, cycling, running, or weights, followed by stretching and foam rolling. Then, at the end of the day, I stretch and foam roll again while hydrating my body for the next day. This takes work, but it’s your health! In my mind that’s worth the effort and time.
Mental – Recently, I’ve stopped neglecting an area of my life that I normally didn’t pay much attention too. Now I make sure I have time to work on my mental health. This includes breaks during the day while I’m working, meditating before bed or even during the days sometimes, and allowing myself time to reflect and recognize the good and bad things that might be happening in my life. This has allowed me to have a better understanding on how to manage an overactive body and brain which many patients with IBD have.
Now I didn’t say this is easy. It’s not. It takes time, effort, and relentless work ethic. But it’s your life; isn’t it worth it? If things can be better than they are right now with your Crohn’s disease or ulcerative colitis, wouldn’t you want to give it a try? It will take time to get the merry-go-round moving in the right direction. There are going to be times when you think you have it going and, boom, it comes to a stop. But we have to get back up and keep trying to get the merry-go-round moving again. Once we can get into a routine and once have the ability to keep our lives going with less effort, that’s when we begin to really see the benefits.
To read more about creating a routine of little changes that can potentially help manage your IBD, check out the Compound Effect.
Ever feel like there is nothing you can do in order to reach a better quality of life with your IBD? Does Crohn’s disease or ulcerative colitis make you feel like there is almost a dark rain cloud that just follows you around and takes all the sunshine out of your life? Many IBD patients know this feeling. We wake up everyday and can ask ourselves “Is this going to be a good day or a bad day?”
Crohn’s disease and ulcerative colitis aren’t easy diseases to live with. They can make us feel isolated from the world: keep us from doing the things we love; keep us from spending time with the people we cherish most; even drastically impact important areas of our life and take away family and work.
When this happens, it can feel like a dark cloud is following us around and there is nothing we can do about it. At times when we are flaring, there isn’t much we can do about it. There are other times in our lives in between flares though that we have to remember that even though a cloud has followed us around, there are blue skies behind it. There can be better days if we just focus on the blue skies and not the dark clouds.
Here are 6 things that mentally strong people do which you can also do in order to have a better mindset with IBD and potentially live a better life with Crohn’s disease or ulcerative colitis.
Move on – Mentally strong people don’t dwell on the past or have long “pity parties” about how bad their life is. They don’t waste time feeling bad for themselves. If you have a bad day, take 12-24 hours to live in the moment and rest your mind and body. Then start the next day fresh and move on from anything bad that might have happened.
Embrace Change – IBD can make us feel stuck. Like there is nothing we can do in order to control our disease. Sometimes we have to take it upon ourselves in order to make change happen and change our lives at the same time. Think of areas of your life that you’d like to change. Make physical, nutritional, and spiritual goals. Then go after them!
Stay Happy – Mentally strong individuals don’t waste time and energy on things they have no control over. You don’t control your IBD and sometimes there is nothing you can do about it. Don’t feel bad about that or let others make you feel bad about it. Do what you can to stay happy in the moments that are good and don’t let your IBD bring you down when it hits. It’s not your fault; don’t make yourself feel like it is.
Speak Up – Ever feel like you can’t talk to anyone about your IBD and it begins to weigh on you? Don’t let this happen. If we talk about our diseases in a positive way, others will react in supportive ways and be there to help. Speak up and share your stories with your friends and loved ones. If you do it right, they’ll respect you even more and you’ll begin to grow your support network.
Take Risks – The strongest people we know take risks at the right times. With IBD this can be changing doctors, going to a new hospital, trying a new medication, or a number of other things. If a dark cloud is following you around, don’t be afraid to take a chance and try something new. Chances are if your quality of life is low, you have nothing to lose.
Celebrate – Having some success and overcoming your IBD is a BIG deal. Take some time to celebrate the good things in your life and relax a little. If you are working hard physically and mentally in order to beat your Crohn’s disease or ulcerative colitis and are winning, you deserve to take a break to enjoy the moment for a little while. It’ll allow you to unwind and get back to the task at hand in order to continue to battle your IBD.
We all know that the dark clouds are going to come into our lives. When they do it’s not easy to get rid of them. Sometimes they can feel like there is nothing we can do and that they will be there forever. When this happens, take a moment and remember that behind any dark cloud there are blue skies. It might not be easy to get rid of them but we have to try in order to see the sun and the sky again.
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.
This fall the IIF’s own Brian Greenberg will be taking on yet another challenge despite his Crohn’s disease and ostomy. He’ll be completing a 70.3 half Ironman on October 2nd and then the New York City marathon on November 6th. This adds up to almost 100 miles of races in just over a month, something hard for a healthy person to complete but Brian will be doing it with his Crohn’s disease.
Brian has been through a lot with his Crohn’s but has recently seen how much cancer can affect an entire family when his girlfriend Sarah lost her aunt to lymphonia after losing her birth mother to colon cancer when she was only 9 years old. On top of that Sarah’s father is a prostate cancer survivor and her grandmother is a breast cancer survivor. It doesn’t end there, with he families best friend battling breast cancer currently.
That is why Brian will not only be swimming, cycling, and running for Crohn’s disease and ulcerative colitis this year, but cancer as well. He’ll be contributing 50% of every dollar to the Jimmy V Foundation for Cancer Research and the other 50% of every dollar will go to help patients with Crohn’s disease and ulcerative colitis with the Intense Intestines Foundation.
Please consider a donation to help patients with cancer, Crohn’s, and ulcerative colitis at the page below. You can also easily and securely donate on your phone by texting IBDCancer to 41444. This will not make a donation with your cellular carrier but bring you to an easy page to use on your mobile device.
Together #WeWillBeatCancer! Together #WeWillBeatIBD!
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.
This episode of the We Will Beat IBD podcast is a special Mother’s Day edition honoring all the amazing moms out there, that are either overcoming their disease or being caregivers.
IIF’s own Brian Greenberg is joined by supermom Amber Tresca of VeryWell.com and supermom Michelle King Marti of the IIF to talk about what it’s like to be a full time mom while either dealing with IBD or being a caregiver.
We are happy to bring you episode 2 of the We Will Beat IBD podcast. IIF founder Brian Greenberg was honored to have Jessica Grossman of Uncover Ostomy on to discuss what life is really like while living with Crohn’s disease, ulcerative colitis and an ostomy. Together Brian and Jessica talk about a variety of topics that every IBD and ostomy patient has faced at one time or another.
You can listen to the podcast right here but also don’t forget to subscribe on iTunes, Stitcher Radio or many other podcasting services.
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.
It’s that time of year again, when you’d like to clean out your closet and neaten up the house. The IIF team would love for you to assist us with our Spring Clothing Drive to help patients with Crohn’s disease, ulcerative colitis and ostomies.
CareCycle will donate 20 cents per pound collected! You would be surprised at how quickly that adds up!
Your donation will go towards helping IIF programs:
Intense Intestines IBDebt
Intense Intestines Scholarship
Beyond the Bathroom Awareness for IBD
Total IBD Health
Take that IBD project
Never Stay Quiet videos
We will gladly take any gently used items such as:
(No board games, puzzles or toys with pieces)
Last Day For Donations is before 6/19/16!!!!
To drop off, or to receive pick up service (depending on availability) or if you have any questions contact firstname.lastname@example.org
It was the seventh day since I took my medication for my Crohn’s disease. I’m on a weekly injection of a biologic to keep my IBD at bay. Around the sixth day I start to see symptoms sneak back into my life and the quality of the days seem to get worse by the hour. At times the nausea can’t be held back, the stomach pain sets in, and my hands tighten up to the point where I have to ask someone to open a bottle of juice for me. It got me thinking, how many good weeks, days, or even hours do we have sometimes, and what should we do with the good times that we do have?
As IBD patients living with chronic diseases, we never know when the roller coaster will stop going up and start to point downhill.
So, what should we do since we know that our healthy time might be limited? We have to find ways to enjoy it and make the most of it while we can with our IBD. We have to take the opportunities to live life and experience adventures available to us. Some might look at this as being irresponsible or not doing what is most important. I look at it as time well spent after hugging a toilet, spending time lying on the couch in pain, or weeks in the hospital.
After breathing in the stale air of a hospital room or spending large amounts of time on the cold floor of a bathroom, don’t you want to do something for yourself?
Many friends of mine have witness a lot of what I have been through with Crohn’s disease. They’ve seen me shortly before and shortly thereafter. Some were in the hospital right after my ostomy surgery and saw how quickly my body changed. Others witnessed me just give them a look which clearly says, “Let’s go home now please.” They have seen the misery and the pain, the defeat that IBD patients can sometimes feel when their disease is in control.
I’ve talked to friends of mine and they feel the same way. They look at everything I’ve been through and they just want me to smile a little bit. They’d like to see me enjoy life when I have the chance to do something, ANYTHING that I’m passionate about. And one thing I’ve learned is that they are right. We have to find the things we love and make the most of the good hours we might have. This might be something small and simple such as going for a walk to see the foliage change, visiting a dog park to watch some pups play, or making a home cooked meal of comfort food we know will sit well. Other times it might be something bigger like going for a short trip, training for a goal we have in mind, or crossing a bucket list item off our to-do list.
No matter what, we need to make time to do things that let us enjoy life, to do whatever we can that is within our means. Every time we begin to feel good again, we know that this time is limited. It might be counted in as little as hours, we hope that we can count them in weeks or even months, but for many of us the sad truth is that it won’t last forever. The time will come to an end. So I ask you one question, do you want to look back on this time and say to yourself “Damn, I’m sick again and I wish I took advantage of the time I felt well more.”?
My guess is no, so spend your time wisely, make a list of the things you want to do on different scales, and when you can DO THEM!
The IIF has placed me one step closer in pursuing my goals despite suffering from Crohn’s disease. Since I was 12, I have regularly been visiting a gastroenterologist and have had my fair share of hospital stays. Because of that, I have decided to pursue a career in medicine. Now 21 and a Junior Biochemistry major at the University of Southern Mississippi, I am taking the MCAT this June. Because of the graciousness from the IIF and their scholarship, I was financially able to pay for the MCAT after paying my tuition for this semester. I am forever grateful to the IIF and their support throughout my journey with Crohn’s disease.
~ Jim Grenn
Having had my permanent ostomy surgery this past August and getting used to life again with an ostomy. I decided I wanted to start my college career to pursue my dream to become a nurse. As I was looking up scholarships to help with the financial aspect of college and I came across the awesome foundation of Intense Intestines. Intense Intestine Foundation didn’t only offer a scholarship but also a community of people facing the same health problems. Having received the scholarship helped to relieve some of the financial burden of school. I am truly appreciative of the generosity and compassion I have received from everyone who is a part of IIF. Thank you so much to the IIF for granting me with the scholarship, and for everything you do to support and raise awareness for IBD.
We are happy to bring you episode 4 of the We Will Beat IBD podcast. If you haven’t listened to an episode yet, this is a great one to start with. Brian Greenberg is joined by Laura Cox who you might know from a Tosh.0 skit a few years back about ostomies to discuss dating, relationship and intimacy with Crohn’s disease, ulcerative colitis and ostomies.
The great part about this episode is that both of their partners, Brian’s girlfriend Sarah Benjamin and Laura’s boyfriend Ryan Houseman, joined them to discuss their perspective and thoughts as a healthy half of a relationship when it comes to dating a Crohn’s disease or ulcerative colitis patient with an ostomy.
Some of the topics covered include:
How to prepare for a first date
When and how to discuss your IBD and/or ostomy
How patients need to be ready to educate
What to do if a person reacts negatively
How to put a positive spin on IBD
The key to communication
How to get ready for intimacy
What to do if there is a problem during intimacy
You can listen to the podcast right here or subscribe to the podcast on iTunes, Stitcher Radio or many other podcasting services.
I learned about this amazing organization that helps the IBD community. When I followed the IIF on Facebook, it was there that I learned about the IBDebt Program. At the time I had $6,000 in medical bills. IBDebt is a way for the IIF to help people who are struggling to pay their medical bills.
After one of my toughest years, I applied for help. A few weeks later I received a call telling me that I was the first recipient of an IBD grant. It was an incredible relief!
I can never express how appreciative I am for the IIF and their generosity. The gift has given me peace of mind. It makes me feel good to know that the IIF and the IBDebt program is there to help those facing medical debt.
Thank you to everyone who is a part of the IIF, and for everything they do for the IBD community. ~Caryn Powers
As one of the 2015 Winter recipients of the Intense Intestines IBDebt grant, I would like to thank the Intense Intestine Foundation for not only their financial assistance in covering past due specialist cost and procedures, but just as importantly emotional support by connecting me to other individuals with IBD and introducing me to a greater network of awareness.
I am truly grateful for these blessings, and feel strongly that the IIF goes above and beyond their mission to help others. With renewed hope, I agree, “we can do amazing things!” ~Gina Martin-Absher
We look forward to be accepting applications for our
It’s natural to develop anxiety in a variety of situations with Crohn’s disease and ulcerative colitis. You begin to have natural questions that begin with “What if…” and in a short amount of time, that list can grow so much that you end up staying home to avoid difficulties.
The problem with eating out is that it’s how people socialize these days, so if you stay home you alienate yourself. Before you know it, that one time you stayed in becomes 5, 10, 20 or more times that you’ve avoided going out. We do that because it’s easy and staying home is comfortable.
At the same time, missing out on being with our friends is a real bummer. We see photos or check-ins on social media – it’s hard to see that knowing you could have been there. Eventually, those feelings can snowball out of control into a wide range of emotions that aren’t healthy.
SO WHAT DO WE DO AS IBDers? We have to step out of our comfort zone and eat out with our friends and family. The key words I used are “friends and family.” These people know what you go through and tend to handle your Crohn’s disease or ulcerative colitis in a similar way that you handle it. You just need to have the confidence to know you will be okay. This can be challenging, but we need to allow ourselves to grow to learn how to deal with our disease.
This means that if you are confident, secure, and open about your IBD, your friends and family will likely be supportive and do what they can so you are able to join them. If you are upset, depressed, and closed off about your IBD, they won’t know how to help you, so it leaves them little opportunity to include your comfortably.
When you go out to eat with IBD, remember that that you don’t have to dive head first into a situation you’re terrified about. You can start slowly and ease your way into it, going only to places you want with the people you want. Here are a few easy tips to follow when going out with IBD:
1) Surround Yourself with Good People – If you are like me, you have different friend groups, some of which you are closer to than others. Start with the friends who you are closest and most comfortable with. These are the people who will be happy that you are out with them at all – they’re very encouraging.
2) Be Open About What You Need – When you begin to go out with the people you’re comfortable with, be open about what you need. This might be a certain type of food that you can tolerate and a place that you know which has accessible bathrooms. The list of what you need might be longer than just those two to start but share what you need because there are always restaurants to go to.
3) Plan Your Day – Every IBD patient has worried about going out to eat, so what do we do? We don’t eat. If we don’t eat, there is less chance of pain and less chance of needing the bathroom. We don’t need to starve ourselves for the entire day. If you are going out for dinner, plan your meals for the day and make sure you eat things that you know work with your system. If needed, take anti-diarrhea medicine on an empty stomach before you go out. It works best taken an hour before you eat.
4) Ease Your Way into Going Out – You don’t have to sit down for a 5-course meal with your friends the first time you go out. Start slow and build up your confidence that things will be okay. Maybe go out for a frozen yogurt or something small first, then move on to appetizers, before graduating to a dinner that you are confident about.
5) Say NO – A big problem with IBD is that everyone thinks they understand Crohn’s disease and ulcerative colitis. We’ve all heard “Oh, that feels like a stomach bug right?” Wrong. No matter what anyone says or thinks, you know your body better than anyone. If they offer you a piece of food, to share a plate, or anything else you can say no. It won’t hurt their feelings. Eat what you are comfortable with and say no to anything you aren’t with.
6) Know Your Restaurant and Bathroom – Every restaurant has different bathrooms and different crowds. I’ve even been to men’s bathrooms that don’t have doors on the stalls, which is especially nerve wracking when you go to the bathroom with an ostomy. Do some research, even if you have to go to an area of restaurants you might be attending, and check out the bathrooms ahead of time. Last thing you want is to have to run to a bathroom that only had one stall and has a long line. Suggest a place to eat that has good bathrooms but also isn’t overly crowded.
7) Be Mentally Prepared for Anything – Something I’ve learned is that adversity makes you a stronger person and if you can deal with the worst situations with strength and grace, everything will be okay. I’ve been out in public when I’ve had an accident before my ostomy or a leak after my ostomy surgery. It can be HORRIFIC. We just have to take a deep breath and deal with the situation as it unfolds. I’ve had to walk up to my friends and tell them, “I’m really sorry, we need to go now.” You know what they’ve said any time that happens? “Okay, let’s go and get you taken care of.” Be calm, handle the situation and then regroup once you have the time to reflect and figure out what happened. Once you have done that, hopefully you can fix the problem and enjoy the next time you go out.
8) Don’t Miss Out – Even if you have a bad experience, it doesn’t mean that it will happen every time. You only live once. You don’t want to miss out on living this life and being with your friends. Learn from mistakes, problem solve, and continue to go out to be social with those you want to spend time with.
In the end, we need to do what is right for us. If you are flaring, not feeling well, and in pain, just be open about it and let those around you know that tonight isn’t the night but that you will be joining them next time you feel up to it. But if you are feeling well or even just okay, it might be time to figure out a game plan and venture out, even if it is just for a little while. Who knows, in time you might just realize that going out and eating with friends is more doable than you thought.
The #WeWillBeatIBD podcast is hosted by Brian Greenberg, founder of the Intense Intestines Foundation. Brian will be covering a variety of topics to raise awareness for Crohn’s disease, ulcerative colitis and ostomies. He’ll also be showing patients and their families how to deal with inflammatory bowel disease in various ways and interviewing other key members of the IBD community.
Brian’s goal is to show others with Crohn’s disease, ulcerative colitis and ostomies that they can live a good life by learning a “new normal” which they can adjust to. While also keeping a positive attitude to deal with the roller coaster ride we call IBD.
We hope that the We Will Beat IBD podcast helps you live a better life with IBD and that you enjoy the show.
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.
I grew up in the days of mental health being taboo. I didn’t want to take any antidepressants or see any type of psychiatrist because I equated that to people that were nuts. I thought I’d be thrown more medications to take and appointments to attend. I imagined I’d be laying on a couch experiencing a one-sided conversation; this all while being analyzed by someone looking over their reading glasses. Over the years, I’ve changed my views 180 degrees. I’m not inferring I’m completely nuts, but I’ve learned the needs and benefits of having a mental health team coinciding with IBD.
I fought back the cloud of stigma when my anxiety was at an all time high. I didn’t know what was causing it or that it even was anxiety. Then, the door literally opened to a tall male whose spouse has an autoimmune disease. He would be one of my most beneficial additions to my care team. Immediately, there was an underlying understanding that this male knew what my daily life was like because he lived through it personally, through his spouse and as a caregiver. Each time I would have a scheduled appointment with him, I knew, for at least that session, I’d have someone that would interact with me on a level of understanding and care that I could relate.
I’ve learned through this third party outlet, where minimal venting is allowed as it’s deemed unproductive, that antidepressants don’t do the whole job. The root of the causes in conjunction with medications aides in daily life.
Anxiety can be in many forms.
For me, my anxiety attacks were my body’s way of stopping me in my tracks and saying “Wait! Pay attention to me. Give me a voice.” I thought I was going through the motions and dealing with my health, until I randomly couldn’t breathe on the tennis court, an outlet for me. Another time, I had to stop an airplane from closing its door so I could escape. I knew something had to give. Discovering I wasn’t giving my inner body the attention and voice it desired, along with a little help from medications, resulted in a huge weight lifted off of my chest.
Many IBDers are stuck and tethered in a hospital facility with no escape, or at home with extremely low abilities for activity. I was very active and still having 20-30 of these anxiety attacks a day and they were debilitating. What was it? How could I make them stop? Will they ever go away? Do other people have these too?
Anxiety can come about from fears of the unknown. Fears of not fitting in. Fears of no answers. Fears of medicinal side effects, which is a large trigger for me. Fears of changing specialists due to many factors. Fears of losing friends. Fears of not measuring up to the expectations in your mind of how you imagined your life. Add the fear of missing out on events due to how you’re feeling, and many times you have no choice but to miss important events; which leads to states of depression and angst towards yourself, that once again you missed an important event. The list goes on and on.
I learned my body needed a voice. I could raise funds for non-profits, do events, work, etc., but was I really in tune with my body? Was I just doing what I was comfortable doing and what the specialists requested, no questions asked?
I try to work on myself on a regular basis. I try to be on top of any signs of a depressive state and make sure to be as open and honest with my care teams as possible. Holding things back only builds it up internally, and the cycle of not giving my body a voice begins again.
The IIF would like to invite you to our 2nd Annual Intense Intestines golf outing. Enjoy a full day of fairway fun and fine food at one of the New York area’s top golf courses.
Sterling Farms Golf Club offers 18 holes of picturesque scenery and challenging golf with classic New England charm. Sterling Farms Golf Club has been given a 4 out of 5 star rating by GolfAdvisor.com and is noted for its meticulous condition, superior facilities, and various amenities.
Where: Sterling Farms Golf Club,
1349 Newfield Avenue
Stamford, CT 06905
When: Thursday, October 1st
1:00pm shotgun start (check in begins at 12:00pm)
The day includes:
18 holes of friendly but challenging competition on one of the areas best golf courses
Golf cart to allow you to enjoy the day in full comfort
Full dinner with everything you need to satisfy your appetite
2 free beverages to quench your thirst
Entry into the long drive, closest to the pin, and closest to the line contests
Chance to win a car during our par 3 challenge
Cost: $175 per person
IIF We Will Beat IBD towel ($20)
IIF Premium divot tool ($20)
IIF Bag tag ($5)
Would you like to sponsor or make a donation to the 2nd Annual Intense Intestines Golf Outing?
Please click the link below for more information and to support our event.
Proceeds from the golf outing go towards the Intense Intestines Foundation’s efforts to connect, support, and educate the public about Crohn’s disease, ulcerative colitis, and ostomies, as well as helping members of the IBD and ostomy communities through various programs throughout the year.
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.
Come join the IIF team at the Dodgers vs. Mets game on Thursday, July 23rd at Citi Field to support the IBD and ostomy community, while helping raise critical funds for the Intense Intestines Foundation programs.
We have the first three rows of the Big Apple section in center field reserved for a fun summer night cheering on the New York Mets.
With the purchase of each tickets you will receive a $10 food/beverage voucher good at any concession in the stadium.
While enjoying the game you will be supporting many valuable programs:
Intense Intestines Scholarship
Intense Intestines IBDebt
Beyond the Bathroom Awareness
Never Stay Quiet videos
We Will Beat IBD programs
We’ll also be getting a visit from Mr. Met and get a special shoutout on the jumbotron! Join us for a great night at the ballpark! First pitch is at 7:10pm.
We look forward to seeing you at Citi Field on July 23rd.
A few weeks ago I started to think about what was behind my motivation to do 70.3 for IBD triathlon. There are countless other ways I could spend my time – why this? I stewed on this, reflecting on my first two months of training and looking at all of the training ahead of me. There are probably more reasons than this, but here is what stuck out:
I want to do something challenging – despite my IBD.
My friends who complete them are so positive and really enjoy themselves.
There are many inspirational people in my life that said if I truly focus, I could complete it.
It can help the IBD community to show that incredible things can still be done.
If I can inspire just one patient with IBD to fight a little more and do what they love, it will be worth it.
After figuring out why I wanted to do a 70.3 distance triathlon, I thought about how much others have inspired me – not just to live an average or normal life, but to strive for more. It’s partially because of them that I can look the disease in the face and say, “You can’t stop me from finishing the 1.2-mile swim, 56-mile bike ride and 13.1-mile run.”
Here are a few of the major inspirations of mine:
Just days before my ostomy surgery in 2010, I was told about a fellow IBDer and ostomate named Rob Hill. He was not only into living a very active life and overcoming his IBD, but also had climbed the 7 summits of the world (the tallest peaks on each of the 7 continents). Rob also runs a charity in Canada called IDEAS. The timing couldn’t have been more perfect. At this point, I had talked to a few fellow ostomates but most weren’t into similar activities as me. I wasn’t sure if I would ever climb, ski, or have many of the outdoor adventures that I loved so much again. Over the 4-5 days before my surgery, I watched many of Rob Hill’s YouTube videos on repeat. I immediately began to have a different outlook on life. This surgery wasn’t going to be the end of my life. In fact, it was going to be the beginning of a great new one. I went to the hospital on November 9, 2010 not with a negative mindset but a motivated one, ready to take on whatever came next. Knowing that someone who went through the same surgery could climb the 7 summits taught me that anything is possible if I put my mind to it. It helped me wake up from my ostomy surgery with a positive light shining on me.
Ryan has also been a big inspiration to me as another member of the IBD community. Ryan runs an amazing website that has helped countless IBD patients at www.CrohnsGuy.com. I had the pleasure of meeting Ryan couple of years ago while I was driving back to CT from Chicago. Ryan and I are very similar in that while we know we’ll have down times battling Crohn’s disease, we won’t let them keep us down for long. After a hard day, we wake up the next morning with the motivation to make this day better than the last. It might not be easy but we don’t have a choice other than to fight our Crohn’s. Last summer, Ryan swam almost the entire distance of Lake Erie (24+miles). This would be a tough feat for a healthy person, yet Ryan trained relentlessly and put himself in a position to do something incredible. He didn’t let his IBD keep him from doing something he was passionate about. He set his goal and went after it, despite his Crohn’s disease. I find this incredible inspiring and helped me get to the point I am at right now.
Sally is a close friend of mine. While she doesn’t have IBD, she has been a huge inspiration in my life. A couple of years ago Sally found out she had a brain aneurism, which she named Albert. On Christmas Eve in 2013, Albert was removed during a craniotomy. Since then, Sally has shown the world that nothing will stop her. She’s not only inspired those with brain aneurisms, but many others, including me. Shortly after her surgery she decided to complete an Ironman. I’m sure many people thought it would be a to much after such a life experience, but Sally didn’t waiver from what she had set out to accomplish and she finished the 140.6-mile race in Austria. Like Sally, I’ve been told I am a little crazy to do a half Ironman so soon after such a life changing surgery. They’re worry I’m overcompensating or forgetting I’m not a regular healthy person. But with proper training and attention, I know I can complete the 70.3 miles, even with Crohn’s disease. It doesn’t have to keep me from reaching my goals, just like a brain aneurism didn’t keep Sally from reaching hers.
The list of all the people who’ve inspired me is really endless. But one of my biggest inspirations is the entire IBD community. Over the past few years since I started the Intense Intestines Foundation, I have been blessed by the opportunity to meet countless people battling Crohn’s disease and ulcerative colitis. And each one of you is courageous and has your own incredible story about fighting the diseases. They aren’t easy to deal with, yet we all have a similar goal: to live our lives to the fullest. The details of our goals might be different. They might be to complete a triathlon or to climb the 7 summits of the world, or, at others times, maybe it’s just to get out of bed or find a comfortable position to sit. No matter what the goal, we are all fighting. What inspires me most is all of the fellow IBD patients out there who aren’t giving up and continue to stay positive. Thank you all.
Do you ever get emotional when IBD keeps you from doing something?
I have – and still do for that matter. There are times when Crohn’s disease and ulcerative colitis can feel like it has completely taken over my life. Constant trips to the bathroom, cramping, pain, bleeding, emotions take a toll on a person. When a patient’s IBD is flaring, there is almost nothing that can be done. But what about times when it isn’t flaring or is relatively controlled?
We owe it to ourselves to live life to the fullest, especially when we feel our best. I recently spoke with a friend who told me that she was always happy to see me out and about, doing so much. She knows it isn’t always easy and, more often than not, extra work has to go into the active lifestyle I lead.
The conversation grew and we began to talk about people with chronic illness and the effects it can have on a their life. It’s devastating that so many people with different diseases have their quality of life diminished. Sometimes, it’s hard to see what it has done to their mindsets. It’s note easy to stay positive during such difficult times.
I’ve been low before as a result of my Crohn’s disease and sometimes it felt like there was only a spec of light at the end of the tunnel. I’m so relieved that I held on to the hope that days would get brighter. Without that hope, I don’t know where I would be now. Our conversation then led to us reflecting on my mindset. I truly believe you only live once (YOLO) and I also have a fear of missing out (FOMO). We realized that this is why I do so much with my IBD.
Which leads me to my 70.3 for IBD training. I finally got out for my first outdoor run of the season. I was planning for a short run, but I still had to plan and prepare properly for it. So I prepped my backside with TP padding just in case I drained from the area where I had my proctectomy. Then I prepped my front side to make sure that my ostomy was ready for running. Of course I also had to make sure it was empty before I started. Okay, now I’m ready…right? Thankfully, that was all I had to do today but it’s still more than most people do before a run.
After all the prep for the run, I was a little down. I know how much extra work it takes for me to just get out for a few miles. But then I got going and realized I can do things healthy people can. I proved to myself Crohn’s didn’t have to keep me from being active. I can’t tell you how happy I was to get outside to run – I even passed a few deer along my route. The reason why I was out running was my YOLO and FOMO attitude. I know that if I didn’t have Crohn’s disease, I would love to compete in triathlons, so that’s what I’m going to do.
The highlight of my day turned out to come just after the run. When I was done I walked over to a bench just to relax and take in the fresh air. I sat down on the bench without any hesitation. It was an outdoor wooden bench – I know other IBDers can feel my pain. Butt there was no pain! (See what I did there?) Didn’t even have to lower myself slowly. It’s amazing how the smallest part of the run made the day great and it was something as small as sitting down after.
I beg of my fellow IBDers, don’t forget to enjoy the little things in life. When you’re feeling well remember that YOLO and it’s healthy to have a FOMO, if it motivates you to live a full life!
Please consider a donation to my 70.3 for IBD half Ironman. Your contribution will go towards helping the IIF assist those with Crohn’s disease, ulcerative colitis and ostomies.
The Intense Intestines Foundation team is always looking for ways to raise awareness and improve the lives of those with Crohn’s disease, ulcerative colitis and ostomies. Over the years we have had different projects which we have always been excited about but we are now launching a new project which we are all extremely happy to let you know about.
Our NEW Total IBD Health page will be a place where fellow patients and caregivers can share advice with each other on a variety of topics. This will allow for Crohn’s disease, ulcerative colitis and ostomy patients to see what might be working for some of their fellow community members and potentially try it out for themselves.
With the thought that know one knows better than fellow patients, we wanted to create a space where everyone in the IBD and ostomy communities can share their advice and allow others to read about what they have done which has worked for them.
Take a moment to check out the NEW Total IBD Health page by clicking below and feel free to submit some advice of your own for others to see. We can’t wait to see what you all are doing to live a healthy life with IBD.
We are excited to announce that the IIF is accepting applications for our 5th round of the Intense Intestines Scholarship.
This scholarship is designed to help those with moderate to severe Crohn’s disease or ulcerative colitis achieve the higher education they desire. Earning a degree is not an easy process and takes time. At the IIF we understand that an IBD patient can have many setbacks over a four year span to earn their degree. We want to help with the extra time it may take an IBD student to receive their degree or certification. This is why we are offering the Intense Intestines Scholarship. Our goal is to help with the rising costs of obtaining a higher education, while living with Crohn’s disease, ulcerative colitis or an ostomy.
To donate and help us continue to give the scholarship to those in need, please click the link below.
Moderate to severe Crohn’s disease and ulcerative colitis can commonly cause a student to:
Miss classes due to illness
Skip entire semesters
Withdraw from classes
Be forced to take a part time class schedule instead of full time
We are seeking applicants who have had setbacks due to their Crohn’s disease or ulcerative colitis, and have demonstrated a willingness to succeed. Applicants should show strong moral values at home and in their community. All applications will be reviewed in person by the IIF Board of Directors and we will choose the candidates we feel best exhibits the values that the IIF stands. Please read the following requirements and complete the attached application.
Be age 18-25; seeking an associates, undergraduate, or graduate degree. Applicant may be currently enrolled in a program or trade school seeking license or certification.
Be diagnosed by a physician or specialist, with moderate to severe IBD; Crohn’s disease or ulcerative colitis
A Legal US citizen, or be able to provide documented proof of ability to study in the US.
Have had a GPA of 2.5 in high school, or college if currently enrolled.
Below there will be a link with our application for the Intense Intestines Scholarship when we are accepting applicants.
Please fill out all areas as none are optional.
Two letters of recommendation are also required for all applicants; one personal and one professional. Letters of recommendations must be sent to P.O. Box 8097, Stamford, CT 06905.
Important Information For Applicants:
We will not be accepting any applications via email.
We will not be accepting any application via regular mail.
You must fill out the application below with our online application.
You must include two letters of recommendation; one professional and one personal. If you do not submit two letters of recommendation, your application will not be accepted.
We will only be accepting the first 50 applicants at this time. After we reach 50 applicants, the application link will automatically shut off.
Please do not send any applications to our address or email as they will not be accepted.
Intense Intestines Scholarship Timeline for the Fall 2015 Semester:
Important Dates For Applicants!
Sunday, March 15th – Applications will be accepted online at the link below.
Sunday, May 17th – applications will no longer be accepted.
Friday, July 3rd – All personal and professional letters of recommendation must be received by mail or email. Send letters by email as a PDF file to Scholarship@IntenseIntestines.org or to our address below.
Intense Intestines Foundation
P.O. Box 8097
Stamford, CT 06905
June 30th – Finalist for the Intense Intestines Scholarship will be notified and asked to create a 2-minute video introduction that shares their IBD story with the Intense Intestines Board.
Sunday, July 19th – IBD videos created by the finalists must be submitted.
Friday, August 7th – The two Intense Intestines Scholarship recipients will be announced.
Please check back to this page on Sunday, March 15th for the link to apply.
December was my first full month of training for the 70.3 for IBD half Ironman race I will be doing. I haven’t officially decided whether I’ll register for the race in Portland, Maine in August or Princeton, New Jersey in September but I’m excited to be getting on track!
What I do know is how much training I need to do and how far I’m going to have to go. A half Ironman is a 1.2 mile swim followed by a 56 mile bike ride then a 13.1 mile run. 70.3 miles, powered by a single person.
While I have 8 and a half hours to complete the course, I’m shooting to best that and complete the race in 6:30. I know it’ll be tremendously hard but as long as I train properly, I’m confident I can reach my goal.
Right now, my training is going well and I’m building up a base of fitness so I can hit the ground running come spring, when the weather warms up. I have a couple good friends who will be helping me with training also, both of whom have triathlon experience, so I should be well prepared come late summer! I’ve already gotten to a point in which I’m excited to spend my time riding and running for training. Right now, I can complete 90 minutes of cardio without being tired and needing to stop. During December I noticed that I started enjoying every minute of my cardio!
My mantra for this journey is “Just Finish.” I realize being a competitive triathlete may not be in my future but crossing that finish line will be an incredible accomplishment after everything I’ve been through. Just five months ago, I was in a hospital recovering from one of the hardest surgeries I’ll ever have!
In all honesty, I’m not doing this just for me. All of the training and effort I’m putting into completing a 70.3 for IBD is to show others with Crohn’s disease, ulcerative colitis, and ostomies that we can still live a full life with IBD. It won’t be easy, I know. But not much in life really is. I truly believe those with chronic diseases are some of the toughest people in the world. We adapt each and every day to deal with countless unforeseen and uncontrollable circumstances.
Dealing with IBD is about adversity and I foresee withstanding a lot more of it over the next nine months. But I will still cross that finish line. And if, by doing it, I can inspire just one more person with Crohn’s or ulcerative colitis to battle their disease with all their strength, and to lead a fuller life, then all the effort I’m putting into this journey will be worth it.
Below is a short video from my first outdoor training run on January 3rd in New York City. I’m already a quicker and running closer to a 10 minute mile on January 9th. I’m on my way to 70.3.
To make a donation to my 70.3 for IBD fundraiser, please click the link below. Together #WeWillBeatIBD!