We May Never Be Completely Normal

I’ve always told IBD patients that as long as they aren’t flaring, a reasonably normal life is possible. With the right planning and preparation, patients have the ability to participate in most events and activities that pop up during everyday life. But sometimes the little things add up and remind us that we have extra responsibilities as IBD patients.

Central ParkFor instance, right now I’m typing this in Central Park, enjoying a beautiful day by one of its lakes; a near-perfect afternoon, but not quite. To make today happen required a good amount of effort and preparation. At this point, I’m just glad and grateful to have been able to get here, have lunch, and read.

Non-patients aren’t generally aware of the steps we take to take part in regular events, and I want to share what even an easy day like today required:

The first drawback was that I had to leave the dog at home. It would have been real nice to have Buddy here, lying on the grass, and enjoying the day with me but while planning the day’s bathroom breaks, I realized it just wouldn’t work. You can’t exactly leave a dog alone outside a bathroom, especially in such a big and crowded park. I would have had to cut the relaxing and productive day short and head home since a bathroom break is always two or so hours away.

The amount of preparation wasn’t limited to spending time at the park, though. The walk to Central Park was also a concern. My rectal area is currently so bad that a 15-block walk that should take only 20 minutes can cause serious pain. I had to not only plan what to pack for a regular day at the park but also what my body might need in case I started to feel bad.

One of the regular parts of the day that we are challenged with as IBD patients is a trip to the bathroom. I’ve only been here for two hours but have already had to pack everything to get to the bathroom. When I returned to the same area afterwards, there was a moment when I saw everyone relaxing and yearned for their security of knowing they can spend hours upon hours here and (maybe) never have to worry about going to the bathroom.

I’m not convinced it will ever get easier. I’ve worked a lot over the years to not let all these regular complications and worries get me down, but sometimes I slip and fall. Occasionally, like in this moment, I fear that I’m missing out on certain aspects of life.

Just think positive.

Even though July will bring my 37th surgery, I know that I’m still one of the lucky ones in the IBD community. In starting the IIF, I have managed to use the difficult experiences I’ve gone through to find solutions and help people. That’s a win in itself, but even better is how being around such a positive community has rubbed off on me. I’m pretty lucky.

And now, back to my day at the park.

If you would like to make a donation to support the Intense Intestines Foundation and help those with Crohn’s disease, ulcerative colitis and ostomies please click below.

Razoo

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Intense Intestines Golf Outing at Sterling Farms

IIG Golf Outing FB Cover

The IIF would like to invite you to enjoy a full day of fairway fun and fine food at one of the New York area’s top golf courses for the Inaugural Intense Intestines Golf Outing. 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.

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Details:

Where: Sterling Farms Golf Club,

1349 Newfield Avenue

Stamford, CT 06905

When: Thursday, July 17th

8:00am shotgun start (check in begins at 7:00am)

The day includes:

  • A delicious, light breakfast to start the day
  • 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 lunch 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: $125 per person

Giveaways:

  • IIF We Will Beat IBD towel ($20)
  • IIF Premium divot tool ($20)
  • IIF Bag tag ($5)
  • Equinox 1 month membership with 1 personal training session ($225)

That is $250 of giveaways for only $125!  Double what you pay to play!  WOW!

Deadline to register: Tuesday, July 8th

If you would like to register manually and pay by check, please click the link below.

Intense Intestines Golf Outing Registration Form

Raffle prizes from:

  • NAGI Jewelers
  • Mohegan Sun Casino
  • The New York Giants
  • Okemo Mountain Resort
  • Philips Electronics
  • Bar Rosso
  • and MORE!

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.

We’d like to thank our sponsors for the Inaugural Intense Intestines Golf Outing:

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Bullying and IBD by Brian Greenberg

I’m not particularly thrilled to mention this commonality, but most of us have probably been judged because of our IBD at some point. In an ideal world, this would never be a concern and everyone would be considerate towards IBD patients (and all those who deal with diseases and differences). Despite a supportive family and friend group, I was subjected to unfavorable judgment as well. In high school, I was bullied because of my Crohn’s disease.Bullying 3

I’d like to give you a little background:

Fifteen years ago, when I was in high school, many diseases and conditions were not discussed as much they are today. The public didn’t have such a highly developed Internet to spread awareness about them so quickly and visibly. They were virtually unknown by my peers. Students who had Crohn’s disease, such as a fellow IIF Board of Directors member and HS classmate and I, never discussed it. We didn’t even have the social spaces online that are available today to talk about it.

Who was I in high school? I was small, underweight, and frequently missing from classes. There was clearly something wrong with me, but I wasn’t very open about it with classmates apart from my close friends. My fellow students didn’t know what I was going through on a daily basis. So, there were rumors.

The worst, and I still can’t imagine (and don’t want to know) the stories that were created to come up with it, was that I suffered from AIDS. People thought I was dying. I was very clearly sick and because of it, I imagine my fellow students were scared to approach me. I recall a situation when a classmate was told by another not to sit next to me in class. They didn’t say why but when I worked up the courage to ask someone and they told me about the rumor, all I wanted to do was cry.  This made me wonder how often instances like this happened around me and how often people treated me a certain way because it was easier to just make fun of me because of my condition.

Looking back at that time and comparing it to the world we live in today, I’m glad to see that students and people with diseases and conditions are treated vastly different by society. We’ve watched stories on the news that show an entire high school rallying behind a fellow student suffering from a disease. We saw an entire city gather around a sick child dressed as Batman who saved San Francisco from bad guys one day. Everything is not perfect, but I’ve seen the world grow to be more understanding and accepting, especially for someone who suffers from a disease.  Below is a great example from ESPN about how students with diseases or conditions are now accepted much more.

Since starting the IIF, I’ve been happy to meet middle school and high school students who are able to talk about their disease openly to peers in their schools. They might not live a typical student life due to their IBD, but they can be a normal part of the student body without consistently being judged as I was in the past.

We have come a long way, even though it might be hard to see, and we still have work to do. That’s part of what we strive to do through our work at the IIF. We want to continue to help student (and non-student) patients feel more comfortable around peers. We want to help make the world a place where it is easy for patients to Never Stay Quiet about their Crohn’s disease or ulcerative colitis.

In retrospect, I wish I didn’t stay so quiet when I went to school which caused this rumor. The way I was treated may have been different if I had been more open or tried to raise awareness about Crohn’s. I’m glad that, with the IIF, we can provide support to student patients and, hopefully, inspire them to be courageous.

Never Stay Quiet!

To make a donation to assist the IIF in our mission to help those with Crohn’s disease, ulcerative colitis and ostomies, please click below.

Razoo

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Intense Intestines Scholarship Update and Schedule

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Over the past few months we have been hard at work preparing to open applications for our next Intense Intestines Scholarship. In addition to announcing that we will begin accepting applications starting Monday, May 5th, we have the privilege to share additional news: The IIF will award TWO scholarships for the upcoming fall semester.

Please don’t hesitate to apply for the scholarship, even if you have in the past. We are very happy to consider you again with a new application. For the upcoming awards, there will be a limited amount of applicants we can accept. Only the first 40 we receive will be eligible to receive the Intense Intestines Scholarship, so don’t wait to apply.

We look forward to reviewing applications for the 2014 Fall Semester. We have been amazed with the incredible IBD students who have applied in the past and are eager to see more of the same this year.

Important Dates For Applicants:

Monday, May 5th – Applications will be accepted online at the link below.

Friday, June 20th – Applications will no longer be accepted.

Friday July 4th – All personal and professional letters of recommendation must be received by mail or email. Send letters by email as a PDF file to Info@IntenseIntestines.org or to our address below.

Intense Intestines Foundation

P.O. Box 8097

Stamford, CT 06905

Friday, July 25th – 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.

Friday, August 8th – The two Intense Intestines Scholarship recipients will be announced.

Thank you for your interest in the Intense Intestines Scholarship.  We will continue in our mission to help the IBD and ostomy communities in direct ways like the scholarship.

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The Truth About My Battle With IBD And How Hard It Is

When you have a chronic illness such as Crohn’s disease or ulcerative colitis for such a long time you begin to want a change – and a normal life.  When so many of your days are filled with sickness you want to relish and live in the moments that you aren’t sick or at least can fake not being sick.  This is what I do so much of the time because no one wants to be sick.

At times I’ve been told that I don’t share enough of my hardships with Crohn’s disease and that I spend too much time-sharing how I live a normal life or at the very least how I portray myself having a normal life.  In reality, life is nothing but normal, with my Crohn’s affecting me on a daily basis..

For me acting normal is a way for me to feel like a regular part of society but if I told you the truth and gave you some examples of how I fight you would see that even if someone looks healthy and does many things a healthy person would do, it still doesn’t mean life is good.  In reality I’m battling constantly just so that I might not miss out on one chance to make a memory.  My Crohn’s has kept me from doing so much and when I have the chance to say “yes” to something, I will do it so as to not miss out, even if it means I will pay the price for pushing my body after.

DSC01443A good example was this past summer when my girlfriend and I went on a spontaneous trip to Toronto. The trip was great and it was good to get away from my regular scene but it still came with its hardships and I knew that after the trip my body would feel it.  We walked all over the city for two straight days — not a big deal, right?  For someone like me, it was tough.  By the end of the second day my rectum was in horrible shape. The scar tissue from past surgeries was inflamed and the pain was constant.  Sitting down became torture, especial one day when we ate outside and I had to sit on a wire patio chair.

We still had one more day to go and the plan was to see Niagara Falls on the way home, on top of the eight-hour drive home.  The minute we got there I saw we would be walking even more.  The parking lot was about two miles from the Maid of the Mist boat tour entrance.  So what did I do? I grit my teeth and dealt with the enormous pain I was in.  On the way back I had to tell Lisa that I couldn’t walk at full speed due to the pain.  On top of the agony I was feeling, I was draining like so many other IBD patients suffer with.  This wasn’t just your normal drainage amount; this was the type that makes a male IBD patient wish that he had a maxi pad with him.  Needless to say the walk back was slow, steady and filled with pain but we made it!

This is a classic example me acting like I’m living a normal life but in reality not.  My life is anything but normal.  This kind of stuff happens all the time.  There are days when I have to say the same thing about walking around our local mall since I need to take it slow.  Other days I may go to the gym but I’m still favoring areas of my body, making sure I only do exercises that won’t bother an area that is already aggravated.

10006207_10153949496485576_166117967_nI know life isn’t that bad if I’m walking around Niagara Falls, traveling to different cities or skiing, but you can only enjoy something so much when you know there will be consequences.  A good example of this was when I went skiing over the past couple of weeks.  While I was able to have a good time, I paid for it and the end of each and every day.  My rectal area and areas of my stomach that have scars were hurting terribly.  I wasn’t able to ski the same way since in the back of my mind I was protecting my body the entire time, knowing that I would regret what I was doing at the end of the day.After each day of skiing I had to take a very long Sitz Bath in my hotel room and I even brought my Sitz Bath from home to make sure the option was there if I didn’t have a tub to soak in.  When I got home after the trip, my surgeon had to lance an abbesses from my rectum and put in a seton because of what I had just done.  I wanted to feel normal and ended up putting myself in a situation I knew my body couldn’t handle.

So even when you see me doing certain things, when I’m skiing and looking well, when I’m traveling or even when I’m just out to dinner, the reality is that I’m not well.  I’m battling just like everyone else with Crohn’s disease or ulcerative colitis.  I’m just craving the normal life that those without a chronic illness have – seems I will do almost anything to feel normal.

Never Stay Quiet!

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3rd Annual Climb for Crohn’s & Colitis at The Rock Club

The Intense Intestines Foundation is excited to invite you to our 3rd Annual Climb for Crohn’s & Colitis event.

3rd Annual Climbing Event 2014 flyer

In honor of World IBD Day 2014, we will be hosting our 3rd Annual Climb for Crohn’s & Colitis on Saturday, May 17th at The Rock Club in New Rochelle, NY. Similar to last year, the event will include open climbing, an after party with food and beverages, and raffle prizes.

Climbing will be from 2:30pm to 7:00pm followed by our after party. (You don’t have to climb to come down and have a good time). We will have climbing for all ability levels and ages. We recommend 4+ for climbing .

The Rock Club is the premiere indoor rock climbing gym in the New York City area, and we are excited to be invited back for our 3rd Annual Climb for Crohn’s & Colitis to raise awareness for inflammatory bowel disease and ostomies.

Tickets include: climbing day pass, harness, shoes, instruction, one party drink and food at the after party.

All proceeds from the event will be going to support the Intense Intestines Foundation and to raise awareness for Crohn’s disease, ulcerative colitis and ostomies.

You’ll be helping the IIF with programs such as:

- Intense Intestines Scholarship (IBD and ostomy scholarship)
- Intense Intestines Medical Assistance (Helping patients directly with their medical bills)
- Never Stay Quiet Video Series (Awareness video series)
- and MORE!

Visit our website www.intenseintestines.org to learn more about all of our programs.

To purchase tickets to the 3rd Annual Climb for Crohn’s & Colitis click here.

Please come down and help us in our mission to help as many people with these diseases as possible and have a great time while doing it. Together we can show people with Crohn’s disease and ulcerative colitis that they should Never Stay Quiet.

We can’t wait to see you all again at the event this year and climb for a cause!

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Surgery Is In My Future by Brian Greenberg

At times in your life the future comes to mind quite a bit.  Usually I try my best to live in the now but certain parts of life can’t be ignored.  One of the IIF’s Board members recently had a proctectomy (removal of the rectum) and it got me thinking if I should finally have the same surgery.  The decision to have any surgery is not a small one and I have given myself plenty of time to think about the proctectomy.  It may be time.

Proctectomy 2

Why have the surgery you ask?  There are many reasons to have this surgery with my Crohn’s disease.  Usually when a male has an ileostomy it is done in two surgeries, one to create the stoma and the second to remove the rectum.  Many doctors will give the patient some time to think about when they want to go through with the second procedure when the time is right.  For me that time might be next winter.  Here the many reasons why I will be looking to have the proctectomy in November.

My rectal disease is still active and bothering me.  Yes it has improved greatly since I got my ostomy but it still bothers me on a regular basis., especially lately.  There really isn’t any reason for me to continue to live with this constant pain.  On top of the pain, I have drainage which is expelled from the area daily.  Not to the point were I need to wear a pad or anything but it is enough to be annoying enough to make me not want to deal with it anymore.

Proctectomy 1I am comfortable with my ostomy and I am not thinking of a reversal.  When I first got my ostomy I was hoping that advancements would come along and I could get reversed.  Now I’m realizing that I might not even want that.  Living with the ostomy is not nearly as hard or bad as I thought.  The mindset I always had been if they could grow a new colon for me in the future, then they could grow a rectum.  Recently I have been thinking that even if the technology came along, I probably will not want to put my body through what will probably still be a larger surgery.

My rectum is already damaged and the more disease there is in the area, the harder the surgery will be.  A proctectomy surgery for males is a little more difficult because the surgeons are forced to come close to the sexual nerves and the prostate of a male.  The more extensive the damage and the disease is in the rectal area, the closer the doctors have to go to these nerves and muscles.  If I’m comfortable with my ostomy there isn’t much reason to wait with the higher risk of side effects from the surgery.

The longer I keep my rectum, I’m at higher risk of rectal cancer.  This one I don’t think needs a long explanation.  My body and mind have already been through enough.  If I can do anything to avoid a battle with cancer, I WANT TO DO IT.  The longer I keep my rectum the risk of rectal cancer just gets higher.

When I put all of those reasons together it is not that hard of a decision.  Still it is always hard to commit to a surgery.  No one ever wants to go in for surgery but when a surgery is clearly needed, the choice is made for you.  If I wait I will be in more discomfort, the surgery will be more dangerous and I play a game of chicken with cancer possibly.  When I add all of those situations up the choice is made for me by the obvious factors.  I’m thinking that the surgery will be at the beginning of November this year.  Hopefully I will have a good year until then.

Never Stay Quiet!

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A Typical Day by Brian Greenberg

Crohn’s disease and ulcerative colitis can make life anything but normal.  The day-to-day battles which an IBD patient faces can be incredible tough.  They look like obstacles which are standing like HUGE walls in front of us, keeping us from the other side and a normal life.  But we have to do what we can to get over those walls.  It takes effort, perseverance and a desire to have the highest quality of life that our disease will allow.

So what does a typical day look like for me?  I’m a Crohn’s disease patient that has been through more than thirty surgeries and has an ileostomy, so even a typical day is anything but easy for me.  Despite my disease or not feeling well, I still try to do everything I can in order to beat my IBD.  I want to take you through a typical day in my life.  You might be surprised at how much work goes into trying to be healthy.  It does not always work but if I didn’t give it a shot, I could not sleep at night.  I would be awake, knowing I didn’t at least put in the effort.  You are about to see that it is a TON of work just to get through the day.

Before continuing on, I want to add that I go to the bathroom between 15-20 times a day to empty my ostomy.  Please keep that in mind and how it would add to the day I am about to describe.

6:30am- I usually wake up easily.  Most of the time this is due to the fact I don’t get truly deep sleep because of my IBD.  This makes it a little easier to start the day as my body has adjusted to less sleep.  Still I would much rather have a good dream and get some ZZZ.  My Crohn’s has always kept me from sleeping and I rarely go through periods of good sleep.

7:00am- A quick breakfast which I know my body can handle.  I only eat foods that are easily digestible at this time and won’t hurt my stomach.  If I have orange juice or anything acidic my day is done.  After that my stomach would hurt the rest of the day.  Usually a Nature Valley granola bar or some eggs with a glass of milk.

7:15am- Make my protein shake for my workout.  Yes, I know that you are supposed to drink this after a workout but it works better if I sip it during my workout.  If I drink that much protein right after a workout it will go right through me.  I also like to know I’m getting nutrition and hydration while I’m putting some stress on my body.

7:30am- I arrive at the gym.  Currently I’m fighting some rectal pain but I still go.  A workout usually combines cardio and resistance training.  Lately I spend 30 minutes on a stationary bike, mainly because it won’t hurt the scar tissue in my body like running does.  It does still hurt my rectum but I deal with it because I know it benefits the rest of my body.  After I get off the bike I will work out with my TRX suspension trainer, it is easy on the body and I can use my own weight to build strength.  It also works the core with every exercise, not in a direct way so it is easy on the stomach.

One of the bike shirts we had made in honor of Jennifer's life.

One of the bike shirts we had made in honor of Jennifer’s life.

8:45am- Take a quick shower and change my ostomy.  The ostomy change is not every day but I would say it is about three days a week right now.  It is a part of my day which has become like breathing.  It used to bother me and be hard.  Now I just change my ostomy without even thinking about it.  Total time is about twenty minutes because I like to shower and clean the area completely before putting a new ostomy on.

9:15am- I sit down at my desk and start to work.  Usually I do some breathing exercises to calm down my body and get any pain under control that my Crohn’s might be causing.  Once whatever pain is under control, I make this time as productive as possible.  Usually I have the most energy from my workout but know fatigue might hit any time.

10:30am- Take a short break to have yogurt or something that is easy to digest.  It is around this time that I know how the rest of my day will go.  If I’m already feeling fatigued, my day will be a struggle from here on.

12:30pm- Lunch time.  Once again I try to eat something which I know is easy on my stomach.  I also make sure that this is not a large meal.  It is much easier to digest smaller meals throughout the day, so I will have a can of tune in olive oil usually.  I stress the olive oil because it can actually reduce inflammation, vegetable oil can actually causes inflammation.  A side will be a few homemade potato chips which I bake in batches and have around.  Sometimes I’ll have some all natural cold cuts with no added salt or preservatives.  I don’t have bread, as I try to keep a low gluten diet.

2:00pm- Fatigue usually starts to set in no matter what at this point of the day.  Some pain might come back as well.  This is another moment in the day that can either make or break it.  If I get up and walk around a bit to get my blood flowing or even do a few push ups it usually helps my energy level recover.  Wish grabbing an option was a cup of coffee or an energy drink like most people but that would tear my stomach apart.  During this time of day I start to fight some pain possible, still I battle through it.  It would be really nice to take a nap but I only allow myself to do that if it is extremely necessary.

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Some of my juicing ingredients.

3:30pm- Juicing time. Technically I don’t juice, I blend.  This is an all organic smoothie which I credit with healing some of my IBD.  Usually it combines various berries, a banana, various greens, flavored kefir milk, probiotics, anti-inflammatory powder, digestive enzymes and more.  It changes from week to week on what is available and what my taste buds are screaming for. (I will be having another post soon in more depth about the smoothies I make)

5:30pm- Almost time to call it a day.  At this point I can feel tightness in my body.  I’m not sure if this is IBD related or stress related but it is hard to deal with.  My stomach is tight, back and more.  This body has already been through a lot, so I know I need a break.  I stretch a little, watch some TV and do more breathing exercises to relax my body and stomach.

7:00pm- Dinner time.  This is the one meal a day that I allow myself some freedom with.  It usually is something very healthy but it might be whatever I’m craving that night.  A burger without the bun, seared scallops or salmon, roasted or grilled chicken are some examples.  I will try to get some vegetables in me even though it is hard.  I have to steam them no matter what.  I’ve found it makes them a little easier to digest.  Some times I might toss them in olive oil and put them in the oven for some extra flavor.  I’ve kept a journal about what my body digests well and what it doesn’t, so I know what foods to stay away from.  Shell fish for example is a big NO for me and of course veggies such as corn but I’m sure you knew that.

Cajun blackened salmon with steamed/roasted Brussels sprouts.

Cajun blackened salmon with steamed/roasted Brussels sprouts.

9:00pm- Relax for the night and prepare my body for the next day.  It’s been a long day and I’m very tired at this point.  If my body is going to be in pain, this is when it is going to be.  Usually I make sure that there is nothing important on my to-do list at this hour.  Time for me to enjoy and relax in whatever manner I choose.  Sometimes I see friends, watch a movie or just laugh the night away with my girlfriend.

11:00pm- Hopefully by this time I’m tired enough to get some ZZZ.  They might not be great but I will still try to roll around in bed until it is time to try to beat my Crohn’s another day.

As you can see the day is filled with many choices.  Not only choices about what to eat and how to treat my body but also a choice to carry on and not let my IBD control my life.  Don’t get me wrong, when I’m flaring just like anyone else there is not much I can do.  Even on the days which I’m not in a flare, I’m still battling to get through the day.  It takes a lot of work to eat right, juice, exercise and keep my body going but it is a choice.  We only get one chance to live and I rather do everything I can to give myself the best chance at having a normal quality of life.  Even when I’m sick I can at least say that I tried and know that I gave it all I can to get to the other side of that wall I mentioned earlier.

Never Stay Quiet!

To help patients with IBD, please consider a donation to the Intense Intestines Foundation.  Your contribution will go to the Intense Intestines Scholarship, Never Stay Quiet video series and to help patients with the medical treatments.

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Hope For The Future by Sarah Brocker

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The below post is written by Sarah Brocker, the IIF’s second Intense Intestines Scholarship winner. 

I was diagnosed when I was 12 years old and missed 58 days of school that year. At that time, I did not understand the meaning of forever, but I did know that my symptoms were embarrassing and I did not want other people knowing about them. From that point on, I spent a lot of time trying to hide my disease. I did not look sick, so I was often able to pretend that I was not sick. However, as a high school junior, I had my first surgery and started my first biologic, Humira. After surgery I could no longer to pretend I wasn’t sick. When I returned to school, determined to finish the semester, I was astounded to find out that people thought my surgery was cool. I slowly started opening up about my disease, and as time passed, I began to share more and more with the people around me.

College has been extremely difficult for me. I have missed a lot of school and have had three more surgeries. While at school, I have tried Humira, Stellara, Cimizia, Tysabri, Methotrexate and Imuran, but unfortunately nothing has worked very well for me. Needless to say, staying in school is rough but very rewarding. The scholarship offered to me by the Intense Intestines Foundation has not only helped me pay for school but also given me some much-needed encouragement. It was as if they were saying, “We think you’ve done a great job, despite your Crohn’s, so keep it up!” It has given me something to fight for, to not only prove to myself I can do school, but to also show the world what someone with Crohn’s can accomplish. Receiving the scholarship has helped me see that even though I don’t live a normal life and that sometimes my life is extremely difficult, I still can reach for the stars and accomplish my goals!

This same idea of perseverance is represented through the videos shown on the Intense Intestines Foundation’s website. Many of the videos tell stories of IBD patients whom have overcome the obstacles placed in their lives by IBD. These videos provided me with hope; hope that if they can do it, I can do it! They are real people just like me, and I am a real person just like you. Even though everyone’s IBD case is different, we all have one thing in common: living with IBD is crap (pun intended)! We all have this difficult part of our lives that we have to live with, but that doesn’t mean that it will hold you back. I sometimes feel like I could accomplish so much if I didn’t have Crohn’s. However, when I step back and look at my life, I have already accomplished so much despite my disease. So just as receiving the scholarship inspired me and watching the videos inspired me, I hope that seeing my story helps inspire you to dream big, never give up, and NEVER STAY QUIET!

To make a donation to the Intense Intestines Foundation to help us continue our mission in helping as many Crohn’s disease, ulcerative colitis and ostomy patients as possible, please click the link below.

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What Helped Me During My Dark Days with Crohn’s Disease

My last post was about how everyone in the IBD community, as well as their IBD, is different–and thereby how different methods of awareness and remediation are needed.  I’ve continued to think about this topic more and more since the end of IBD Awareness Week.  While looking back on my journey with IBD, I began to reflect on what allowed me to take back my life from Crohn’s disease in so many ways and brought me back from a really dark place when I needed it.

First a little background on what I was going through before my ostomy surgery.  The two years before my ostomy surgery were horrible–which is probably an understatement.  At the end of 2008, my Crohn’s disease began to not just come back, but come back with vengeance.  During this year, I was going to the bathroom around twenty times a day, had accidents regularly, was in constant pain and had NO quality of life.  Even when I tried to enjoy a day, my quality of life was still low, mainly due to the fear I had the entire time.  At this point I was told that a second resection would help me greatly and get me as close as possible to a normal life again.  In November 2009, I had more of my colon removed with the surgery and one of the most important things that was given to me before this surgery was HOPE.

After the surgery I was excited to get back to living again.  It was going to be a 6-8 week recovery and then letting my body adjust with less colon for a few months.  I tried to be patient, but nothing was changing.  The pain was still there, the frequency was still there, the accidents were still happening and all the other symptoms of Crohn’s were still plaguing my body and mind.  The surgery didn’t work.  I wanted to cry and I did.  I knew what the next step was going to be and an ostomy was in my future.  At the time I thought of it as the end of the world.  Life can’t be normal with an ostomy, right?

When I was 21 years old.

When I was 21 years old.

I was in a dark place.  How much could I enjoy my life, when I was going to be a single 28 year old male, with a BAG?  I researched everything I could.  All my friends told me that it was going to be all right, but none of them had ostomies.  Only a few people I was connected with had ostomies.  They told me it would be okay, but none of them were like me…an active young male.  What was going to happen to climbing, hiking, skiing, kayaking and all the other activities I loved?  What was it going to be like to have a relationship?

My ostomy surgery was just a week away now.  I was scared and even though I knew I had to get my ostomy, I didn’t know what it would actually be like.  This is a life changing surgery and nothing can truly prepare you for it.  Now that I was so close to the surgery I was not sleeping at all.  I spent my nights trying to find someone I could connect with.  Someone that was like me and would show me that things would be okay.  I Googled “Climbing with an ostomy” and found exactly what I needed before my surgery.

A gentleman by the name of Rob Hill allowed me to change my attitude.   I was about to go into the biggest surgery of my life with a negative attitude–a bad mindset to have considering what was about to happen.  You should always try your best to go into a surgery with a positive mindset and now I had one.  I had finally found someone who I could connect with.  Rob Hill has climbed the Seven Summits, the tallest peaks on each continent.  I began to watch all of his videos from 2-5am, most of them multiple times.  It was inspiring to find someone living the life I wanted with an ostomy.  All of a sudden the word HOPE was restored in my vocabulary.

Below is one of the videos which helped me tremendously.

I was no longer going into my ostomy surgery thinking that my life was over.  I was now thinking that I was going into my ostomy surgery and my life was just beginning.  The next three days before my surgery were less stressful and more enjoyable.  I even slept the night before my ostomy surgery, really well too.  When I awoke from my surgery, I knew things were going to be okay.  It would take a little time, but after I adjusted and learned how my new body would work, I’d have a quality of life again.  I was not only ready to fight back against my Crohn’s again, I was ready to take my life back from this disease.

We are all different and our IBD is different too.  This is why I want to be able to help as many people as possible with the IIF.  Finding different stories which patients of different types might be able to connect with for our Never Stay Quiet video series is something I believe can truly help others.  Our goal is to have a video that each IBD patient can watch and see a bit of themselves in.  For me it was Rob Hill and showing me an active life was going to be possible with my Crohn’s and ostomy.  For others it might be a completely different story and person which might change their life with IBD.  We have four different stories currently and are working on more.

We need to make sure that every IBD patient knows that they are not inventing the wheel with their disease.  None of us are alone and we all have other IBD patients out there that we can connect with.  We just have to make sure that we Never Stay Quiet and know others in the  IBD community are here to help.

Never Stay Quiet!

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IBD Awareness: IBD Is Different In Everyone, IBD Advocates Are Going To Be Different Too!

Today marks the fifth day of Crohn’s & Colitis Awareness Week in the United States.  From December 1st to the 7th the Intense Intestines Foundation, other organizations and IBD advocates all over the country will be doing our part to raise IBD awareness.  Over 1.4 million people in the United States suffer from an Inflammatory Bowel Disease and many of them suffer silently.  This is a big reason why our slogan at the IIF is “Never Stay Quiet“.

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Crohn’s Disease & Ulcerative Colitis Awareness Week

Recently I have realized that awareness can be done in many different ways!  People have different ideologies about how awareness can be done and the best way of raising it.  IBD is a unique disease and affects everyone differently, which I believe leads to different ways of how people go about raising awareness or even just talking about Crohn’s disease  and ulcerative colitis.  Some people are not just affected with the physical symptoms, but also develop many mental symptoms as well when dealing with an IBD.  Since each one of us has different personalities, our Crohn’s disease or ulcerative colitis can shape us differently as a person.

But is there one correct way to raise IBD awareness or deal with IBD?  This is something I have been thinking about for a while now.  The answer is NO!  We all have to deal with our IBD the way we see best for us and no way is wrong.  I came to this realization when someone told me they saw an IBD patient dealing with their disease positively and living a good life with IBD–and they considered that being a bad way to raise awareness.  This shocked me, but each of us has different levels of being open about our condition and use different wording when talking about how Crohn’s disease or ulcerative colitis may affect us.  But NO WAY IS WRONG!

IBD Advocates at an IIF Event.

IBD Advocates at an IIF Event.

Some of us might want to talk about it in a lighter way and less in-depth way.  Bringing certain topics up and discussing them with details but not anything to graphic.  Others of us like to talk about it in a completely different way.  Discussing all of the details about all symptoms, while using very graphic descriptions.  Since every human is different and IBD cases are so different, we are all going to talk about our IBD differently.  We have to accept all ways of raising awareness and talking about Crohn’s disease or ulcerative colitis.

None of us should judge the other about how we go about raising IBD awareness or discussing our diseases.  The bottom line is that all us are going to have different ways of dealing with these HORRIBLE diseases.  Some might want to climb mountains, run or swim long distances because that is our way of dealing with IBD.  Others might not want to go to those extremes and want to fight back in their own way, by talking about these diseases and other ways.  No matter which we decide, the good thing is that we are raising awareness and doing it in the best way for us combat our Crohn’s disease or ulcerative colitis.   There are patients out there which are similar to all the different IBD advocates in the community, which means that different messages and different ways of awareness is a good way for us to reach all of those that have Crohn’s disease and ulcerative colitis.

Raising awareness in any way is a good thing and we have to accept the ways each of us want to go about doing it!

Never Stay Quiet!

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Thankful for My IBD Family and Much More!

It is the time of year again when we look back at the year we just had and begin to think about all the things we are thankful for.  The past year has been a great one for me, but a weird one as well–a true roller coaster ride.  Luckily for me, the good times out numbered the bad.

Looking back at my personal year with Crohn’s disease, I see that it was clearly one of the strangest yet.  It started with the longest hospital stay I’ve ever had, horrible results for tests  I had taken in March and being scared the word surgery was being mentioned for me again–less than 3 years from my ostomy surgery.  While thankfully things didn’t turn out to be quite that bad, I did have a total of 4 hospital stays this year–the most I’ve had yet.  Some were just short overnight stays; others were longer.  These surgery scares and frequenting of the hospital have made me more appreciative of all the other things happening in my life.

First, I’m thankful that my body has begun to heal!  In March my Crohn’s disease wasn’t treating me well, but my test results in August came back great and my doctor saw a lot of healing.  It was some of the best news that I have received in a long time–especially because in between tests I was waking up everyday scared of what was to come.  I worked hard in order to get the results I did.  My diet has changed, I juice and do everything I can to give myself the best chance.  It is a lot of work, but it seems to be helping so I won’t be changing a thing.

Second, I’m thankful for my amazing IBD family and friends!  As I continue to work on the Intense Intestines Foundation, I have met amazing people who are some of the strongest and most incredible people I’ve met so far.  We all support each other through the good times and the bad.  I’ve never been involved with such a close group of people, who no matter what happens, are there for each other.  Whether if be day or night, we have grown an IBD community of family and friends–making it easier to deal with Crohn’s disease and ulcerative colitis–together. photo

Third, I’m thankful for my incredible friends!  I haven’t had it easy.  Even IBD patients tell me my story is one of the most severe they have heard.  Still I look at my disease as a blessing because it has shown me, I have some of the best friends in the world.  No matter what I’ve been through or currently going through, all of the friends around me have been supportive.  These aren’t the people who are obligated to be there, it is their choice and they have never turned away due to the hard times I have gone through.  Luckily, I have a large network of friends and they have supported me in ways I couldn’t imagine.  Not only with my disease, but in creating the IIF to help others with these diseases.

Lastly, I’m thankful for my mother, brother and girlfriend!  We all have friends around us who help us with our IBD, but these three have been there to pick me up and help me through my hardest times.  My brother and mother have been by my side since the beginning.  They have seen me at my worst and have sat by me through surgeries and difficulties with my Crohn’s disease.  Without them I’m not sure where I would be.  My girlfriend has been with me for almost a year now and has seen how this disease is a crazy ride with its large ups and downs.  Right from the beginning and I mean right from the beginning (I was in the hospital about 6 weeks after we started dating), she has wanted to be there for me through all of the hard times during this year when Crohn’s disease have thrown curveballs my way.  I’ve been pretty down a few times and even when I need to vent, she always knows the correct thing to say.  She hasn’t just spent days with me in the hospital but has even slept over nights to make sure everything was okay.  She was thrown into the fire of sorts with my IBD and the flames never scared her away.  This year was improved tremendously with her in my life.  When I have been health this year, we have been lucky enough to do more in a summer than most healthy people do in an entire lifetime.  Yet when I haven’t been able to do much, she has never complained or been scared by my Crohn’s.  Always being understanding and knowing that the hard times will only be temporarily.

I hope that all of you are feeling well and able to enjoy Thanksgiving and the upcoming holiday season.

Happy Thanksgiving Everyone! 

Mets Game

Never Stay Quiet!

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Will and The Mustache

Hello Everyone,

Online fundraising for Will and The Mustache

My name is William Drakos. I am 27 years old and work as a paramedic in Bridgeport, CT. Every year during the month of November, many of the men I know grow mustaches under the auspices of raising awareness for men’s health, with November being national prostate cancer awareness month. This is a great cause and hits home for many men. However, this year I have chosen a separate charity to raise money and awareness for the IIF.

I became involved with the IIF through my good friend and founder Brian Greenberg, whom is a “sufferer” of Crohn’s disease. So with that being said, I have pledged to grow my mustache and refuse to shave it off until I have raised my preset monetary goal of $2,500 to donate to the foundation. Please help me get back on my girlfriends good side by donating money to my cause and allowing me to shave off my mustache. I will be uploading weekly pictures to the IIF website so you can track my progress.

I will thank you all in advance for your support in my endeavor. My girlfriend, Meghan, thanks you even more.

Sincerely,

William Drakos

*   *   *   *   *

Willam Drakos has always been passionate about helping others. Now he is helping the Intense Intestines Foundation by growing his mustache. This will assist us in continuing our mission of helping those with Crohn’s disease, ulcerative colitis and ostomies. Will’s generous heart is why he has volunteered as a fire fighter for years and now an ambulance paramedic. He has seen first hand with patients and friends how horrible Crohn’s disease and ulcerative colitis can be, this is why he is doing what he can to help the Intense Intestines Foundation.

Will does have a lovely girlfriend who is supporting him with this fundraiser, but all of us at the IIF don’t want this to be the end of their relationship! Please consider making a contribution for Will’s efforts and make the length of this fundraiser as short as possible. We at the IIF (as well as Meghan) greatly thank all of those whose donations get Will to his goal.

Will, clean shaven with his girlfriend Meghan.

Will, clean-shaven with his girlfriend Meghan.

Will 2 weeks into The Mustache.

Will 2 weeks into The Mustache.

Never Stay Quiet!

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Rectal Abscesses and Fistulas, The Un-talked About Part of IBD

IBD: it is a stomach disease, right?  WRONG!  So many people just know about how Crohn’s disease and ulcerative colitis affect the intestines, but it can affect so much more.  Ulcerative colitis not only affects the colon, but the rectum as well.  Crohn’s disease can affect the entire digestive system from mouth to rectum.

What so many people don’t know is how horrible rectal diseases can get.  It is extremely easy for that area to get infected and once an infection exists, it is very hard to control.  Once the infection has started, it can spread through the area causing fistulas and fissures all through the tissue in the area.

I’ve told people about this, but during the time when I had abscesses and fistulas, it was the most horrible time in my life.  My stomach wasn’t even bothering me that much, but my disease was completely controlling my life.  I was constantly sick, experiencing rectal pain and having surgeries to drain the abscesses almost every six weeks.  During this time of my life, I had thirteen surgeries in nineteen months.  It is easy to say that during this time I didn’t have a life.

One of the worst days of my life is something other people joke about.  You might remember the major blackout that crippled the Northeast on August 14th, 2003.  While other people were trying to figure out how to save their ice cream from melting, I was on my way to the hospital to get surgery.  That afternoon I visited my doctor and had a 104.5 fever.  He immediately called the hospital and scheduled an emergency surgery.  The infection was worse than ever and he was nervous about my temperature being so high, for so long.

Not only was I getting surgery that night, but my surgeon said that the infection was so horrible, he would have to put in setons again. (Not soft ones, the hard ones because he wanted to make sure that the infection didn’t come back right away.)  For those of you that don’t know what setons are, they can be either soft strings that are placed through a fistula to make sure that they don’t close up and the infection is able to drain.  Setons can also be hard, almost like cocktail straws, so if you can imagine a cocktail straw in an extremely sensitive area of your body…  This was some of the worst pain that I’ve ever experienced in my life.Setons

Still, the fistulas did not heal correctly and I continued to have multiple surgeries.  As I was facing my first resection, my doctor told me that removing the disease that I had in my colon at the time would help my fistulas.  It was time to take that step and get a portion of my colon taken out.  I was scared, but I couldn’t continue having a surgery every six weeks or so.  Is that anyway to live?

After nineteen months of fighting nonstop, I circled the calendar and picked a date for surgery.  It was going to be three days after my twenty-first birthday.  (When I should have been out celebrating my first legal drink at the bar, I was busy prepping for surgery instead

Still, I was happy that I put up a fight; if I didn’t, I wouldn’t have been sure about my choice.  Going into the surgery I knew all the possibilities of how I might wake up.  An ostomy was mentioned, but at this time wasn’t needed.  Just a few months after my surgery, my rectum did get better, but the damage was done.  Years later when my Crohn’s came back, I didn’t have enough muscle to control ever bowel movement.

After going through what I did for roughly two years, I look at things completely differently.  When you have everything in your life taken from you (I don’t mean material items) and have zero quality of life, it changes the way you see things.  Not being able to leave the house without fear, not being able to see the people you love, not being able to hang out with friends and not being able to do the things you’re passionate about changes life in a big way.

Now I look back on those two years, and I’m glad I went through them in a way.  Those years have molded me as a person and have allowed me to learn to handle almost anything.  At times I don’t even get upset, since I know things can be so much worse.  I’ve even had disagreements with people because I’m not more emotional over certain events.  I don’t get easy upset or bothered anymore.  My disease has allowed me to put things in perspective.  It could always be worse, right?

I might not have many ass muscles any more, but that doesn’t mean I have to act like an ass about something that isn’t the end of the world.  No matter what day it is, I’m thankful for having at least some level of health right now.  I just want to make the most of life, and am happy that I’m able to.

Team Challenge Half Marathon (Napa/San Francisco)

Team Challenge Half Marathon (Napa/San Francisco)

Never Stay Quiet!

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My Dark Days With Inflammatory Bowel Disease

Many times I get asked if I’ve actually had it bad with Crohn’s disease.  The main reason why I believe I’m asked that is because I like to keep a positive attitude and not dwell on a lot the negatives that I’ve been put through during my journey with IBD.  The reality is that even when I discuss my Crohn’s story with others who have had it bad, they are usually even amazed as to what I’ve been through.  In total I’ve had over 30 surgeries now.  So I wanted to share some of my dark days with everyone.

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For the most part growing up with Crohn’s disease after I was diagnosed at the age of 11 wasn’t to hard.  I had a flare from time to time, but for the most part was healthy.  Looking back I even remember using my IBD to stay home from school when I wasn’t even that sick (But really what kid wouldn’t do that).  I realized that something was really wrong my senior year of high school. I was smaller than everyone else, missing days when I was actually sick and falling behind in my classes.  There was even a rumor going around my school that I had AIDS.  When I heard that I knew that my Crohn’s disease was actually beginning to affect my life.

After high school I got to go away for college like most kids dream of.  Even though I had other choices I decided to go around the corner to attend the University of Rhode Island.  This turned out to be a great choice, not because of their academics but because it was right around the corner from home.  Half way through my freshman year I started to feel pain and pressure in my rectum.  I didn’t know what it was, at the time I thought Crohn’s was just a stomach disease.  Soon after this feeling I was sitting in class and knew something was wrong.  A rectal infection had popped and drained right in the middle of a class.  I was to embarrassed to get up, so I sat at my desk till everyone left the classroom, went straight to the bathroom and saw the enormous amount of puss that had drained out of back side.  It smelled horrible and I was terrified as to what might be happening.  I ran back to my dorm, took a shower and laid on my stomach hoping to give my rectal area a break.  It didn’t work.

Over the next 19 months I had 13 surgeries for rectal infections.  It was a constant cycle of getting sick, having a surgery, recovering for a couple of weeks, being healthy for another couple of weeks and then getting sick again.  I had constant infections, setons coming out of my rectum and pain every minute of every day.  This went on and on for what felt like forever.  Finally it slowed down, but I still had to get rectal infections drained on a regular basis.  The first two years of college were ruined, I remember fighting with my parents constantly because my father didn’t believe I was sick and I had to transfer home to the University of Connecticut in my hometown of Stamford.  Still I wasn’t healthy and everyday was a battle.  I was twenty and didn’t have any quality of life.  After battling for more than two straight years I finally decided to have my first resection.  This surgery would take out all of my ascending colon and some of my transverse colon.

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The surgery was a success and I went into remission. Usually patients are told that Crohn’s may come back in 5-7 years.  Mine came back in 3 years and it come back with vengeance.  Surgeries for infections started again and my quality of life was lost to IBD again.  I was going to the bathroom almost 15 times a day and had accidents all the time.  Still I battled, taking large amounts of Imodium and other drugs to do anything I could to slow my bowels down.  Eventually I had to realize it wasn’t working.  I was now going 25 times a day with little to no control.  It was time to have another resection.  This time I would have the rest of my transverse colon out and a tiny bit of my descending colon taken out.  My doctors told me that the rest of my colon was healthy and I would be able to have a normal life, going to the bathroom 4-5 times a day.  Not that


After that surgery, my body never got better.  I gave it as much time as I could, but I was still going 25 times a day.  This time with less control because I digesting even less and taking in even less liquid.  My bowel movements weren’t movements at all, it was basically liquid come straight out of me.  The realization of an ostomy being in my future was clear.  I was scared, wait terrified as to what that meant.  Not knowing what it was exactly because I wanted to stay ignorant to it till this point.  I started to do my research knowing that I had no other options, I had tried everything for an IBD patient and this was clearly the next step.  The research was frightening.  I was going to be a single 28 year male, with an ostomy.  It brought me to tears.  But I was going to take my life back and this was at least trying something.

The surgery was just over three years ago now and I can tell you it has improved my life greatly, in many ways it has saved my life.  Still life isn’t perfect, I have some rectal disease left over which bothers me, my stoma has problems from time to time, and the worst part of all, Crohn’s disease is now affecting my small intestine.

I’ve done everything I can in order to control my disease.  Living a healthy lifestyle is important to me, still my Crohn’s disease and I are always battling each other.  Usually I try to only show a positive side and how I do everything I can to live a normal life.  I’m here to say that my life is anything but normal, but as far as I know I only get to live once, so I don’t want to spend it crying about my disease and the hardships I’ve had to live through.  I rather try to live as much as possible, laugh as much as possible and have as many adventures as possible when I’m not in a horrible fight with my Crohn’s disease.

Never Stay Quiet!

Top of Whiteface Mountain in the Adirondack.

Top of Whiteface Mountain in the Adirondack.

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.
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