A Day In The Life: Remicade Infusion

I haven't posted a blog in a while because, quite frankly, I've been dragging. I'm not sure if my 8 week Remicade infusions are lasting the whole time or if it's something else.

I did go in to receive my latest infusion at the hospital last Monday (December 7th) morning and tried to document it through Facebook and Twitter.

Here is just a simple recap of my notes from the day of my infusion to help folks understand some of what IBD patients go through in order to be "normal" (can we really even define that?).

• Up at 5am, an hour drive to the hospital, arrive at 6:40am and in Remicade infusion room at 7am.

• IV in...waiting on pharmacy to send up Remicade - 7:15am
  

  

• Remicade has started...10 cc's to begin with...then slowly increased over the next 2 - 2 1/2 hours - 7:51am
  

• Now up to 40 cc's of Remicade. A little tired, but otherwise doing well - 8:24am

• Vitals taken...all well. Dosage up to 80 cc's...on my way to 455 mg - 8:44am

• Fingers & toes are cold, but that's common. My temperature was 95.7 this morning...proof that I stay cold. About 1 hour left of medicine, then another half hour to flush the line - 9:23am

• We've reached our cruising altitude: 250 cc's of Remicade until the medicine is finished - 9:30am

• Remicade is finished, have to do a 30 minute IV flush and then off to work - 10:16am

• Remicade treatment finished and back at work - 11:05am

That was last Monday morning and, after a week, I seem to be doing better. I still get tired at certain points in the day, but I feel the medicine has definitely given me more pep in my step.

I have a chronic illness and take medicine that lowers my immune system, so each day can always bring something unexpected.

I continue to take my multivitamin, get my monthly B-12 shot, take an additional daily B-12 pill and drink a minimum of 40oz of water each day.

Since I feel like my Remicade infusions aren't lasting the full 8 weeks, I've decided to talk with my gastroenterologist about what other options I have. I called for an appointment on November 30th and can't get in to see him until January 18th...thus is the life of an IBD patient.

I do hope readers now understand the process of what it's like to go through Remicade infusions. This is something I've been doing every 8 weeks since May 2005.

Until there is a cure, it appears I'll continue this treatment to help keep my Crohn's under control.

I wish good health to all.

Cheers,

Brent

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