The Reality of Inflammatory Bowel Disease

For the past two months, I've been trying to keep everyone up-to-date about the bill currently before Congress that would greatly benefit those of us who suffer from inflammatory bowel disease.

I've also tried to humanize IBD through various anecdotes about my life or general stories about what Crohn's and colitis patients go through on a daily basis.

Through all of my posts, I've kept an upbeat attitude towards everything my condition has thrown my way. I will continue to do that because I don't want to go into a downward spiral of negative thinking...that's counterproductive.

However, some days you do want to throw up your hands and say, "That's it, I give up." That is a reality of IBD that a lot of people don't really understand.

Let me illustrate how frustrating life can be when dealing with a chronic illness.



Over the past few days, I have been experiencing extreme fatigue. This is the type of fatigue where you can't concentrate, your memory is spotty and you have the urge to do, basically, nothing.





Yesterday, I hit a daunting peak. After eating Sunday dinner with family, I returned home to an overall feeling of bleakness. My body and mind were simply exhausted. The only energy I could muster was enough to reluctantly drag myself to bed where I laid down. I didn't sleep because I wasn't sleepy, just tired...and, there is a significant difference.

While in my bed, I could hear my wife begin preparations for decorating the house for Christmas. She had planned on putting up our Christmas tree yesterday afternoon. I heard my son shout with excitement, "A Christmas tree!" and I couldn't pull myself up to partake in a holiday tradition.

That's reality.

Much like the day of Xavier's first football game experience, I lacked the vitality of a healthy individual.

I'm painting a picture of my condition so awareness is created and we can construct wide-spread exposure to IBD.

My next round of Remicade is a week from today and I've already called my doctor to discuss increasing the frequency of my dosage. I'm focusing on eating the right foods that will help my system, drinking water to circumvent dehydration and trying to take things slow in order to combat my fatigue.

Am I down today? Yeah, I don't feel quite well.

Will I continue to stay down? No, I've got to be proactive in order to be in control of this disease.

We all have our days of sickness and, to me, I get frustrated because I feel like I've lost a day to be productive. I have to take advantage of the good days and, on the bad days, realize that my body is reminding me that I need to take care of myself.

This particular blog is a reminder that I will feel good again. I need to understand that...especially on days when my body and mind tell me otherwise.

"Won't let the light escape from me.
Won't let the darkness swallow me."

Truer words have never been written.

Be well.

Cheers,

Brent

Man Can Not Live By Bread Alone...Or, Can He?

Food can be a number of things to everyone: A source of nutrition, comfort, an energy boost or a luxurious treat at a fancy restaurant.

To me, food is my enemy.

Don't get me wrong, I love eating a nice steak, baked potato and a dinner salad covered in blue cheese dressing. But, I also know the consequences of what I eat.

The aforesaid meal would pretty much put an end to my day. I would most certainly head straight to the bathroom before completion and, ultimately, be ready for bed.

Don't get me wrong, after a big meal most folks get tired.

I write this the day after Thanksgiving when we've all gouged ourselves on turkey and the trimmings. I mean your Uncle Bob is usually asleep in the recliner before the Lions score their only touchdown of the day.

We all experience some sort of drowsiness after a meal. Unfortunately, my fatigue doesn't go away. In fact, it gets worse throughout the day and I hate feeling like my body is shutting down at 2pm.

In order to combat this problem, I've decided to eat smaller meals more frequently. For instance, I'll eat foods that I know won't upset my stomach and will prevent me from visiting the restroom. I've been eating a lot of yogurt, crackers and tons of water. I also take a daily multivitamin and have been pretty consistent with my monthly B-12 shot.

I haven't ordered "sesame chicken" from the local Chinese restaurant near work in months. I only eat pizza if I know I'm in for the night and, even then, I'm pretty sure I'll be up at least once during the late night hours in the bathroom.

My new diet plan has seen me lose 25 pounds over the past 4 months. Thankfully, I seem to be at a stable weight now and my bathroom visits have decreased significantly since forgoing my traditional eating practices.

To be honest, I lived a long time thinking that I could eat whatever I wanted and simply neglect the fact that I have a chronic disease that is affected by the foods I put in my body.


So, if you suggest Mexican for lunch and I decline while drinking my bottle of "Ensure", I'm not trying to snub you...I promise. I am merely putting the right kind of nutrients into my body that will allow me to make it through the day without wanting to go home and go to bed right away or straight to the bathroom.





Ultimately, I want to read books to my son when I get home from work, tell my wife about my day and be able to venture out from time to time to social events (even if I do have to take Imodium before I go).

I've been through so much bodily distress over the past ten years, everything from surgeries and kidney stones to bowel obstructions and abscesses, that I can handle the physical pain. It's the mental shut down that frustrates me the most.

"Inflammatory bowel disease" affects so much more than you gut. IBD can set off a chain reaction of symptoms. In my case, fatigue leads to anxiety over having the energy to be productive. Then, anxiety leads to depression because I can't do the things I want to do. And that depression keeps me from being the proactive, positive person I know that I am.

That's why it's so important for me to stay active...I have to keep my mind sharp.

Everyone is different and I can only tell my story about how IBD affects my life. It is my suspicion that many of you reading this relate to what I go through on a daily basis.

Find what works for you and, hopefully, you'll find yourself in control of this disease! I encourage you to journal your daily health, listen to music, join a support group and, most of all, be cognizant of the foods you eat.

Be well.

Cheers,

Brent

Telling OUR Stories about IBD

Last Friday, I took the day off of work to focus on meeting with representatives from Congressman John Tanner and Senator Lamar Alexander's offices about the IBD bill.

Now, before I go into the details of our meetings, I want to point out that as "Advocacy Chairperson" I am merely a volunteer. I do not get paid or reimbursed for anything.

I bring this up because I want to emphasize how passionate I am about finding a cure and raising more awareness about "inflammatory bowel disease".

Initially, we were to meet with Jennifer from Senator Bob Corker's office, but she emailed me on Thursday night informing me that she was ill and could not make it to our meeting. To her credit, she arranged for Matt Varino, field director for Senator Alexander, to meet with us in her place. She didn't have to do that, but it was a very considerate and professional courtesy on her behalf.

So, Mandy and I arrived early to our meeting place in Union City, TN on Friday morning, greeted our guests and waited for Matt to arrive. I asked Tammy Smith of Martin to attend our meeting. She has a 17 year old son with Crohn's disease. I also invited Rhonda Hornbeak to join us. She has two children with IBD.

While it was important to bring this bill to the senator's attention, it was equally important to have these women tell their stories of how Crohn's and colitis affect their life and the life of their family.

We met with Matt for over an hour and really tried to humanize this disease. To his credit, Matt sat back, listened, asked questions and genuinely seemed interested in what we were telling him.

I told him that I wouldn't be doing my job if I didn't specifically ask for co-sponsorship of the bill. Obviously, he couldn't commit on the senator's behalf, but he did take the materials I supplied and said he would present them to the senator's staff.


From there, Mandy and I drove to Jackson, TN to meet with Brad Thompson, field director for Congressman John Tanner.

This time it was just Mandy and me, so we really tried to personalize my condition and tell my story to Brad.

Brad was very receptive to our description of how IBD has transformed our lives. However, he couldn't definitively tell us that the congressman would co-sponsor the bill.

Again, I presented him with additional materials for Congressman Tanner to look over and he said he would play "Devil's Advocate" for us in order to encourage the congressman to co-sponsor.


As an advocate, you are not only an educator but, essentially, a salesman too. I have to brand the disease and the bill into their minds and have a "call-to-action". (Thanks Don Fitzgibbons!)

I think we're, at the very least, making a small impact. The response we received from both Brad and Matt (representing a democrat and republican, respectively) was encouraging. If nothing else, these staff members went away with new information and were now educated about inflammatory bowel disease...that is never a bad thing!

I will continue to take days off of work, when needed, to meet with staff members or, if I'm lucky enough, congressmen and senators. I will continue to write emails, make phone calls and send in physical letters in support of "The IBD Research and Awareness Act" because I represent the voice for all of those who are unable to stand up. I won't stop until there is a significant awareness campaign in place and proper funding for a cure!

*I have to give special thanks to my wife, Mandy, for attending both meetings with me, taking a day off of work and really making a lot of strong points during our legislative visits.

Keep this grassroots advocacy campaign going! Call, write and email your local congressman and senators! Tell them your story and ask them to co-sponsor this bill.

Have a safe and Happy Thanksgiving. For those IBD patients that are struggling, keep hope alive and be well.

Cheers,

Brent

Putting The IBD Bill Into Perspective

Quick! When is "Breast Cancer Awareness Month"?

I'm sure a large majority of you reading this know the answer is October.

The American Cancer Society has developed an effective campaign to educate women on the importance of getting mammograms. I know there is a growing controversy that is currently being debated among doctors, scientists and patients about mammogram screenings. However, that debate aside, early detection has helped save the lives of thousands of women and brought breast cancer awareness to the the forefront of people's minds.

Now, what month is dedicated to "Inflammatory Bowel Disease"...what week...what day?

I think you can see the parallel I'm trying to make here. Early detection through colonoscopies and endoscopies can help patients find an effective treatment program for IBD.

Sadly, the awareness for Crohn's disease and colitis is no where near as wide-spread as cancer, diabetes or Parkinson's disease.

Yet, when you look at the signs and symptoms of IBD, you would have to agree that something needs to be done.

Far too many people (many of whom are children and teens) turn a blind eye to their symptoms because they just don't know what is causing their pain or are embarrassed to talk about it.

By shining a light on IBD, the general public will have a better understanding and that uncomfortable stigma can be taken away.

15 - 20 years ago, if you saw a chemotherapy patient who had lost their hair, you might have pointed...some may have silently laughed behind their back. Now, you have a better understanding as to why they lose their hair and have compassion for them.

IBD patients are looking for that same compassion.

Talking about bathroom visits, flatulence and diarrhea are usually used in a joking manner.

For those of us with IBD, it's not a joke...it's our lives.

Now, don't get me wrong, we all have a pretty good sense of humor (we kind of have to), but we do ask for your understanding.

Let's help the Crohn's & Colitis Foundation of America establish an effective awareness campaign!

Call your local legislators and ask them to co-sponsor "The IBD Research and Awareness Act".

By supporting this bill, we can help thousands of patients who suffer silently and let them know that they are not alone.

Cheers,

Brent

Advocacy In Action

Up until today, my advocacy efforts were mainly done in front of my computer or through various calls placed to legislators.

In speaking with Scott Golden, Deputy Chief of Staff for Congressman Marsha Blackburn (TN-R 7th), I found out there would be a town hall meeting in Lexington, TN mainly focusing on the current health care reform bill.

Even though I am not in her district (though as the Tennessee Advocacy Chair, I represent her constituents), I made the hour drive past right past I-40 to Sparky's Pizzeria and Grill.

This was a whole new experience for me. I was taking my commitment to this piece of legislation and going out into the political realm.

I arrived about 25 minutes early and found several other folks waiting in the back meeting room. We all exchanged pleasantries as we waited for the guest of honor to arrive. A staff member informed us that Representative Blackburn would be around 10 minutes late because of a previous engagement earlier in the morning.

Around 11:15am, Congressman Blackburn entered the meeting room and greeted everyone in attendance personally. Being somewhat new to this whole process I was taken in by her presence as she shook my hand, "Hello, my name is Brent Hinson...it's an honor to meet you," I said as an amateur lobbyist.

For a majority of the meeting, I sat and listened to her viewpoints in regards to the current health care reform bill. She made a lot of interesting points as I remained objective. I did interject once by raising my hand, "Is there no middle ground...I mean, is everything black and white...is there no compromise?" On this particular issue, the congressman illustrated how polarizing this bill (H.R. 3200) is between the political parties.

As she finished answering questions and took a few pictures, I introduced myself to Scott Golden and thank him for inviting me to this meeting. I presented him with a copy of the summary of the IBD bill. He asked me to follow him and asked that I wait while the congressman finished greeting her constituents as she exited.

"We'll do a walk and talk...you can make your pitch to her as she leaves," Golden explained to me.

You have to remember, going into this meeting, there was no guarantee that I would even be able to speak with her.

As she prepared for her exit, I introduced myself again, clarified which bill I wanted to discuss, explained that this bill was very similar to one she had previous co-sponsored and specifically asked her to co-sponsored this bill.

Now, I realize this isn't the best way to go about discussing this piece of legislation, but I had to make the most out of my one-on-one face time.

I thanked her for her time, asked that she research the bill and sign on to it. I also managed to give her a CCFA "Got Guts" bracelet.


She was headed back to Nashville, so I hope she was able to look over the bill summary and give it careful consideration. Health care (along with unemployment) seem to be at the top of the pile for our legislators. I know there are other aspects that she must give her attention to, but I did my best to bring "inflammatory bowel disease" to the forefront of her mind.

Keep those calls, emails and letters going into her office so that it remains a priority and she co-sponsors the IBD bill!

Cheers,

B

Small Steps Toward Change

It's been a busy week as an advocate!

I've been setting up meetings, working out a schedule to meet with legislator aides and holding down my full-time job!

Next Friday morning, I'll meet with Jennifer, a member of Senator Bob Corker's staff, in Union City, TN to discuss the IBD bill. Then, I'll drive to Jackson, TN to meet with Brad, a member of Congressman John Tanner's staff.

Tomorrow, there is a event in Lexington, TN where Congresswoman Marsha Blackburn will be in attendance. I plan on making the drive to Sparky's Pizzeria and Grill for the one hour meeting. Scott, from Congresswoman Blackburn's office, said this was a "town hall" meeting so there is no guarantee that I'll get to speak with her, but I'll make every attempt to request a moment of her time. Congresswoman Blackburn co-sponsored the previous bill (H.R. 1113), so I hope she will again sign on this time around.

One issue about "The IBD Research and Awareness Act" that comes up a lot is funding. Funding concerns are not an issue with this bill. There is no money associated with the National Institute of Health (NIH) section and very nominal amounts in the Centers for Disease Control (CDC) section.

Plus, this is an authorizing bill, not an appropriations bill. So, money for programs at the CDC won't material until the bill is passed and the Appropriations Committee provides funding in its annual spending bill for the CDC. *Thank to Gavin for the additional insight.

I hope that clarifies any misunderstandings and helps everyone realize just how important this bill is for IBD patients. This bill will help existing patients, but also encourage those who may be suffering from symptoms to see a gastroenterologist. If people are aware of the signs, they can be properly diagnosed and start an effective treatment program.

I didn't know anything about Crohn's, colitis or IBD in February 2000 when I was diagnosed. Now, I have a wealth of knowledge and want to help share that so no one has to go through the pain and embarrassment that I experienced.

One last note for today. I would like to thank Nick Collard for all his hard work raising awareness about IBD and fund-raising with his Team Challenge program. Please, support his work by donating to his team and help him reach his goal!

Be well and I wish everyone great health.

Cheers,

B

Forward Progress!

During our advocacy conference call on Thursday night, Gavin Lindberg (CCFA legislative consultant) stressed the importance of one-on-one meetings with legislators.

Up until that point, I had pretty much stayed consistent with letters and emails. I thought it was a great jumping off point and it gave me something to focus on until my advocacy call.

On Friday, Gavin emailed me an effective document to help secure meetings with my Senators and Congressmen/women.

Eager to garner more support for "The IBD Research and Awareness Act," I called my local Congressman and both state Senators requesting meetings to discuss the bill in detail. I also faxed formal written requests to all three as well.

In hindsight, Friday probably wasn't the best day to make a request for a meeting...especially this past Friday because of the important health care vote over the weekend.

However, to my great surprise, I received an email from the office of Senator Alexander at 9:00 this morning asking where I'd like to meet (Washington D.C. office or one of his TN offices). I responded back indicating that a Tennessee meeting at his convenience would be great. Moments later, another email arrived with details that my request would be submitted to his Nashville office and I would hear back shortly.

I had a work-related meeting mid-morning, so I was out of the office for about an hour. Upon my return, I had a voice mail from the office of Senator Corker in regards to my request. I quickly dialed the number left by his staff member. Unfortunately, I was unable to speak with anyone during that time, but left a message and thanked them for their quick response.

While no dates are set up just yet, this is a great illustration of taking that first step in being a part of the political process. Our legislators represent us, so it is our obligation to let them know our thoughts and views.

I am now working on submitting a formal request to meet with Marsha Blackburn (R-TN 7th District), who previously co-sponsored a similar *bill before the House.

*This bill (H.R. 1113) was proposed in a previous session of Congress. Sessions of Congress last two years, and at the end of each session all proposed bills and resolutions that haven't passed are cleared from the books*

Again, this goes to show that time is of the essence to secure c0-sponsors, pass this bill through the House and Senate and have President Obama sign it into law!

Thumbs up to everyone who continues to work hard!

Cheers,

Brent

Personalizing IBD - The Way To Pass The IBD Bill

Last night I took part in a conference call with 3 great individuals from the Crohn's & Colitis Foundation of America (Amy Friedman, Gavin Linberg and Steve Goodman).

As Advocacy Chairperson for my local chapter (Tennessee), they helped give insight on how to effectively communicate with legislators and, ultimately, how to secure co-sponsors for "The IBD Research and Awareness Act." They also provided detailed background on the bill and explained exactly how this grassroots movement began. I'll try to sum up my call based on the notes I took during our conversation.

Amy works in New York for the CCFA and helped spearhead the advocacy movement. Gavin is a CCFA legislator consultant in Washington D.C. and has many years of experience working with politicians. Steve is the president of the Georgia chapter of the CCFA and is our mentor in this advocacy process.

Basically, as advocates, our main goal right now is to help pass the IBD bill that is before Congress. Time is off the essence as a new Congress will assemble next November.

The great thing about this bill is that it is a bi-partisan piece of legislation. How is that possible you say? Republicans, Democrats and Independents can't seem to agree on anything (I say that tongue in cheek). It is possible because the bill was introduced by legislators who are affected by IBD. Again, this disease doesn't discriminate.

For instance, Senator Harry Reid's (D-NV) wife has ulcerative colitis. Senator Thad Cochran (R-MS) has a college friend with UC. Congressman Dennis Kucinich (D-OH) has Crohn's disease.

They have a personal connection to this disease and want to pass the bill as much as we do.

Now, our job is to tell our personal stories face-to-face with our local legislators. All 3 were confident that if we were to sit down, explain our background with IBD and then specifically ask for co-sponsorship, senators and congressmen/women would sign on.

The part that I needed help with is setting up meetings. However, Gavin explained that I (or anyone interested) should call, ask for a formal meeting, submit a written request and be persistent...not pushy...just persistent. He indicated that it may take several phone calls, but a meeting would eventually come to fruition. Plus, make yourself available around their schedule. If the best time is on a Saturday at 1pm, jump at the first chance for a meeting!

The bill itself is brief and easy to explain:

1. Expand research at the National Institute of Health.
2. Establish an awareness program at the Center for Disease Control (CDC).
(I didn't realize this, but there are many disease-specific awareness programs at the CDC, but there isn't one for "inflammatory bowel disease" (IBD)!)
3. Establish a pediatric registry at the CDC in order to help advance pediatric research.
4. Authorize for five (5) years an IBD program at the CDC. This will make sure sure it is formally funded and authorized by Congress.

Ultimately, it comes down to more awareness and research.

I encourage everyone to keep calling, writing and emailing your local legislators but, if you have the time, consider meeting with them one-on-one and put a personalized story with this disease.

Network with friends and co-workers to find out who might have contacts with a senator or congressman/woman.

Explain, in detail, how many days you've spent in the hospital, the vast amount of pills you have to take on a daily basis or the surgery you had to go through. Describe the pain, frustration, anxiety, depression and fear of living with a chronic disease.

We will get this bill passed into law! I am extremely motivated to do my part and hope I can inspire others to make their voice be heard.

If you need help or if you have questions...PLEASE contact me at any time.

Thank you to all who have helped thus far!

Cheers,

Brent Hinson
Advocacy Chair - TN Chapter - CCFA
ccfaadvocacy@gmail.com
TN Advocacy on Twitter