Intense Intestines Foundation Blog

Ulcerative Colitis: Can it be Cured? (The IIF’s Position)

CureCan ulcerative colitis be cured?

The CCFA believes that the removal of the colon for an ulcerative colitis patient is a “cure.” They further describe it as a choice after other medical options don’t work for a patient: “This operation involves the removal of the colon (colectomy). Unlike Crohn’s disease, which can recur after surgery, ulcerative colitis is ‘cured’ once the colon is removed.”

Is surgery a cure?

There has been a continuous debate within the IBD community on this topic. Research has shown that while there are benefits to the surgery, the removal of a vital organ can be very difficult on the body and the loss of the colon is one that not all have the ability to cope with.

Ulcerative colitis is a tremendously complicated disease. It has a wide range of symptoms; it can attack a person’s body in many ways and manifest itself very differently in each patient. Some patients may be affected physically AND mentally. As we have previously mentioned, each IBD patient is different and must find what works in their individual fight against the disease.

That being said, UC is mainly located in the colon and, for some patients, the removal of the colon may improve their lives. However, the loss of such an important organ may have significant consequences, as not all bodies can function well without this critical section of the GI tract. In this case, “cure” is a misleading term; not all patients will get the results the word insinuates.

Surgery

The IIF’s stance on surgery being considered a cure for ulcerative colitis:

The removal of the colon is a serious surgery that can affect the body in different ways. As such, all other options should be exhausted before the decision of amputation of the colon is made. A colectomy for an ulcerative colitis patient may limit how the disease affects the body, but the body tends to work differently afterwards. Like many surgeries, nothing can be guaranteed – a patient must always weigh the risk that goes along with any surgery. It is each person’s responsibility to research affects and understand all possible outcomes after the removal of the colon for their UC.

The Intense Intestines Foundation believes that the removal of any vital body part, for any disease, is NOT necessarily a cure. The amputation of the colon is a medical treatment option that alters the way the body functions, sometimes with adverse effects. A cure is not something that has these impacts on the way the body works, it is something that corrects the body and restores health.

In engaging with patients in the IBD community, the IIF has found that some patients live very healthy and fulfilling lives following the removal of their colon. The active disease has been removed and their body accepts the surgery, which means ulcerative colitis will not return.

Other patients do not have the same results. The amputation of their colon may not give them a higher quality of living and their bodies might not function normally. Missing a major part of the GI tract and ulcerative colitis may affect their body in other ways. These patients don’t seem to have a reason to consider themselves “cured,” and continue to fight the disease’s effects.

Ideally, this topic would not be at the center of debate in the IBD community. At the IIF, we continue to support and hope for a full and complete CURE for both Crohn’s disease and ulcerative colitis in the near future.

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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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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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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.

Razoo

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Cycling the Big Apple for IBD and Ostomy Awareness

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The IIF will be riding in the Five Boro Bike Tour for the second time in 2014.  This ride is for all ability levels and doesn’t require a large amount of training.  The 40+ mile ride goes through all five boroughs of New York City, by many landmarks, through Central Park and over many bridges in the area.

For more information on the Five Boro Bike Tour, please click here.

We will be riding again this year to raise IBD awareness, educate those about the diseases and of course to have a good time.  The fundraising minimum will be $500 this year.  For their efforts to raise IBD awareness, riders will receive an IIF jersey/shirt, IIF water bottle, lunch after the ride and more.

To sign up for the ride, please fill out the form below or click here.  After filling out the form, you can begin to create your fundraising page at the link below.  For tips on fundraising for the IIF, please click here.

Intense Intestines Cycling the Big Apple Team Page!

If you are interested in riding or signing up for the ride, please join the Ride’s Facebook page as well.  We will be posting updates there as the ride gets closer.

Cycling the Big Apple 2014 Facebook Event Page!

An IIF team member will contact you shortly after you complete the form below.  We look forward to cycling with you in 2014!

 

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The IIF’s Second Intense Intestines Scholarship Winner: Sarah Brocker

The IIF is happy to announce Sarah Brocker as the winner of our second Intense Intestines Scholarship.  Sarah is an amazing twenty year old woman, who has done everything she can to not let her Crohn’s disease keep her from earning her degree.

Sarah is currently on TPN therapy and bowel rest while she is taking classes at Hanover College.  This means she spends all day battling her Crohn’s disease while not eating anything.  Then at night hooks herself up to an IV to receive all of the nutrition her body needs directly into her bloodstream.

We believe that Sarah is an inspiring role model for other college students with Crohn’s disease or ulcerative colitis.  The IIF knows that she will set an incredible example for other young adults in the inflammatory bowel disease and ostomy communities.

Please visit Sarah’s blog My Not So Normal Life with Crohn’s Disease and Youtube page where she tells her story about battling Crohn’s disease.

Below is the video submission Sarah sent to the Intense Intestines Foundation to complete her application.  She discusses her life with Crohn’s disease, how she is determined to finish her degree and that she will Never Stay Quiet.

We are happy to have Sarah as part of the IIF family.  In order to help other young adults with IBD and/or ostomies we need your help.  Please consider a 100% tax deductible donation today.

Razoo

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My First Complete Semester with Crohn’s Disease by Lauren Beach

Lauren WebI am proud and thankful to say that I have finally made it through an entire semester of college. No surgeries, no major flare-ups, no hospitalizations – just a normal old semester. Or at least as normal as a girl at college with Crohn’s and an ostomy can get. I got to spend my time studying, creating new friendships, getting involved and having fun, all without my Crohn’s taking over – like it should be. I finally feel like a normal college student and I could not have done it without the help from The Intense Intestines Foundation as well as my parents. So I am writing to say thank you.  I am also writing to tell you about my semester at Merrimack College, and maybe even to give a few tips along the way.

Starting this fall semester at Merrimack as a complete nervous wreck. I had taken the previous semester off on medical leave, due to a couple of surgeries and was not sure I was ready to get back to living away from the comfort of my home again. I was worried I would still be weak from surgery, or fall into another flare-up as that is how previous semesters have gone. However, I was surprised to feel that nervousness slip away after only the first week of school. Once I settled in and reunited with all of my friends who were so happy for my return, Merrimack once again, began to feel like my home away from home.

My junior year of college, which is about the time classes geared toward my major start to really take off. I enjoyed all four of my classes this semester as well as held down an after-school nannying job. I found it easier to focus on school when I was able to have my health back. However, like any other student, I found myself in stressful situations form time to time throughout the course of the semester.

During those times, I forced myself to stay on top of getting exercise and eating healthy. It was a lifesaver having an apartment on campus with a kitchen this year and to not have to rely on the options at the dining hall for all of my meals.  I think that the most important thing to keep in mind, being a college student with Crohn’s, or IBD, is to not let the stress take over. Whether it is due to roommate issues, or that paper you put off, or that big exam next week, I found it important to force myself to keep calm. For me personally, I like to release stress at the gym and I think it is important for everyone to find his or her own outlet for stress during college, and especially during finals week.

College is difficult for anyone- tests, papers, drama, stress occur on the daily and throwing Crohn’s Disease or any other IBD into the mix can make for a challenging time. Most people do not realize the hidden battles we all fight to conquer something as simple as a semester of college, in which any other 20-year-old might take for granted. However I think in the end it makes us all stronger. So thank you again to all of the members of the IIF. The scholarship I received gave me that extra push to continue through another semester of college. I could not have done it without you guys. I also could not have done it without my parents who are my biggest supporters. Keep calm, manage your stress, and always remember to put your health first. While at times it might seem unachievable, it is in fact possible for IBD kids to have a normal college experience, too!

You can assist the IIF in helping other college students just like Lauren.  Please consider a tax deductible contribution by clicking the link below.  Thank you.

Razoo

 

 

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Will and His Mustache for the IIF

Hello Everyone,
Online fundraising for 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

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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.

Donate Now

Will; Clean Shave

Will; Clean Shave

Will Week 1

Will Week 2

Week 3. Will needs your help!

Will Week 4!

Will Week 4!

 

 

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

I’ve continued to think about how IBD awareness is different for everyone 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.

When I was 21 years old.

When I was 21 years old.

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?

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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Opening Up About My Crohn’s Disease by Lauren Beach (IIF Scholarship Winner)

If I was asked to write a piece like this two years ago, I think my response to it would have been completely different, in fact, I am not sure I wouldhave even been able to answer the question at all. “How do I decide to tell people I have Crohn’s Disease?”Lauren-Web-261x300

It has been an incredibly long journey for me with this disease. Everything from hospital visits to bathroom trips, and most recently, four surgeries. I have been known as the skinny girl in high school, and the girl who misses a lot of class in college. It has been really difficult at times, but with a lot of maturing, and growing up over these past couple of years, I have realized that telling people about my disease is not at all the scary conversation I used to think it would be.  Actually, the conversation often makes people step back and say “wow, you are so brave”, as opposed to what I used to think people’s reactions might be toward me telling them about what I go through.

In the past, I was never one to open up about a lot of things. However, having gone through multiple surgeries these past couple of years as well as coming to terms and being more accepting of my ostomy, I have started to really over come my insecurities. I do not let this disease define me, however it is a big part of my life and so why should others not know about it?

When I got to college my first year, I had no idea that I could have special housing arrangements especially for my disease, like an apartment with a kitchen or a place with a private bathroom. When I transferred to the college I currently attend, I did not even think twice about opening up to my roommates about my disease. I have decided that it is better for myself to open up completely, at least to the people whom I live with about the disease, rather than having to explain myself later when they ask why I am always in the bathroom. In my opinion, it has made life ten times easier to open up about the disease when people ask.

I am also in a sorority at school with 28 other girls who are totally accepting of my disease. For the most part I keep things to myself, however, when I just recently had surgery and was forced to take a semester off, I found I had to open up to more people about the disease. I think most of the girls knew that I had Crohn’s disease, but they did not know the major details, or the extent to which I had the disease.

When you open up to people about it, and only if you want to open up to people about it, I think you will find, at least based off of my experiences, that people are genuinely accepting and sincerely feel bad for all you have been through. I have yet to encounter someone who has made fun of what I have, but I am sure those people do exist. So, my advice is to open up to people who you are close with, but only if you choose to do so. Opening up to people sometimes lets them see a whole new side of you, one whom is brave beyond belief and has overcome a lot of hardships.  And who knows, maybe the person you open up to will open up to you about their self and you will learn something knew from them. Just like the whole precept of Intense Intestines, “Never Stay Quiet”.

To help others with Crohn’s disease, ulcerative colitis and ostomies, please click the link below and make a contribution to the Intense Intestines Foundation which will allow us to continue our mission.

Donate Now

Posted in Crohn's Disease, General, Inflammatory Bowel Disease, Inspirational Stories, Intense Intestines Foundation, Ostomy, Ulcerative Colitis | Tagged , , , , , , , , , , , , , , , | 1 Comment