Crohn's Disease

PissBottleMan · May 2008

We had a very successful "Take Steps for Crohn's and Colitis" charity walk in Martin, TN last weekend.

I put together a video using pictures/movies from the day of the walk. I used My Own Two Hands...the Jack Johnson/Ben Harper version.

Enjoy.

Cheers,

Brent

DocChicago · May 2008

PissBottleMan wrote:

Just out of curiosity, have you come across any serious cases of patients taking Remicade.

I've frequented a few other health-type message boards and there are some folks that advise against taking it.

PBM

I've seen infusion reactions, but no tuberculosis or lymphoma, if that's what you're asking. These infections are rare, but there are risks to modulating your immune system like that. It sounds like a good drug for you though.

DocChicago · May 2008

Stephen Flow wrote:

Maybe this is a good place to put this...

I've been on Colazal for my Crohn's since I was diagnosed almost 2 years ago now.

Back in November I moved and in my move misplaced my meds for about a week and a half... Not having the meds had absolutely no effect on me whatsoever... so I decided to try not taking them and see what happens... well... nothing happened... No flair up, no pain, no discomfort.

So I have not taken them since... It has now been about 6 months of me not taking any medication for my Crohn's Disease...

I have been having normal bowel movements since then and have not told my doctor about not taking my meds for fear he will be pissed, but my meds are very expensive and they make me extremely tired.... I know all of this sounds stupid (trying not to take meds to see what happens) but I know my body and I know when I feel ok.

I was thinking what if my doctor misdiagnosed me?

What do you guys (who have experience with Crohn's) think?

oh man. a few of my patients have done this. some of them learn a powerful lesson about the value of maintenance meds.

in the end, the decision is yours. i think your doc deserves to know you're not taking the meds though. not everybody flares when stopping maintenance meds, but it is more common than when people are on them.

if you have just colonic disease, your doc might consider Azulfidine. It's really old so it's cheaper. Some people have side effects, but if not then it's a good med.

PissBottleMan · June 2008

The hospital were I get my Remicade treatment puts out a quarterly magazine called Life Stories which chronicles people in our area that deal with certain ailments. They also do several :60 commercials that air on our local tv station.

Since the marketing person used to be an anchor at my station, I asked her if they would do something on Crohn's Disease. She ran it through the proper channels and everyone thought it would be something new for Life Stories.

So, about a month ago, a production company set up a camera in my hospital room and got some b-roll footage of the nurse hooking up my IV and then they did an interview for an upcoming commercial. I'll post it as soon as it airs...it may not be ready until late summer/early fall.

Friday, they set up a photo shoot for my inclusion in their quarterly magazine.

They just sent me the proof pictures today.

You can view the proof pictures here. I was a little stiff on the first couple of shots, but I think they turned out ok.

Hopefully, the magazine should be out by July and I'll post the article as soon as I can get it scanned in.

I appreciate everyone's support.

Cheers,

PBM

bigeye21 · June 2008

PissBottleMan wrote:

We had a very successful "Take Steps for Crohn's and Colitis" charity walk in Martin, TN last weekend.

I put together a video using pictures/movies from the day of the walk. I used My Own Two Hands...the Jack Johnson/Ben Harper version.

Enjoy.

Cheers,

Brent

Nice vid. I'm doing the Seattle event Saturday!

PissBottleMan · June 2008

bigeye21 wrote:

Nice vid. I'm doing the Seattle event Saturday!

Good luck to you.

We held a satellite walk in conjunction with the Nashville chapter and had a great time.

With more preparation, we hope to make it a bigger event next year.

Have fun!

PBM

PissBottleMan · June 2008

I got interviewed for a local medical magazine story today (a tv spot will follow the magazine article soon)...here is the copy that the writer sent me (I'm very pleased with how it turned out):

Crohn’s Disease Sidebar

Patient Experience
Brent Hinson,

500 words

Cover Tease:
Crohn’s Disease… Life Goes On

Headline:
Crohn’s Disease Didn’t Stop Brent Hinson—It Got Him Going

Body Copy:

When Brent Hinson, now 31 years old, found out he had Crohn’s Disease, he was a bit freaked out. He was a young man in his 20s, suffering from a painful and chronic ailment that he had never heard of.

Because he was having terrible abdominal pain, he was given a routine colonoscopy in 2000 that diagnosed him as having Crohn’s Disease, a mysterious disease that usually has no known cause or cure. His freak-out was only the beginning of his new health problems. He then became very depressed as he began treatment—taking more than 20 pills a day, seeing his face literally change shape because of the medicines, and going to the bathroom countless times during the day. “It plays with you mentally,” he confessed.

After about six months of suffering, he woke up one morning unable to get out of bed and had to be helped by his wife, Amanda, to get dressed. His doctor, Rick McCombs, M.D., diagnosed this latest turn in Brent’s condition as a colon obstruction that required nine days of hospitalization and surgery that removed about a quarter of his small intestines and part of his colon.

“But life goes on,” Brent says today. “I don’t live with Crohn’s Disease: Crohn’s Disease lives with me,” he says as part of his personal mission to spread the word to all who will listen.

“Now, I’m doing really well,” says the commercial producer at a local television station. The only medicine that Brent takes is Remicade, which he receives intravenously every eight weeks at Lourdes hospital in Paducah. Other than his one medicine and having to go to the bathroom a few times more a day than he really likes, Brent leads a pretty normal life.

“Life doesn’t stop when you get a chronic disease,” he says with enthusiasm. “I got married, witnessed the birth of my son, and bought my first home. It could be a lot worse. I’ve not had a bad flare up in several years.”

But his life did change. The one thing Brent wants out of his experience with Crohn’s Disease is to raise awareness of it so that others won’t go through the confusion and depression he had in trying to understand what the disease is doing to him. For the past four years, Brent has been instrumental in organizing and promoting pre-show fundraisers in Canada and the US with the rock band Pearl Jam, which has a member who also has Crohn’s Disease. To date, he has help raise more than $100,000 that was donated to the Crohn’s and Colitis Foundation of America. In addition, this past May he organized a fundraiser “walk” in Martin, TN, bringing together more than 30 people and raising $2,000 to increase awareness and fight the disease.

“It my passion to raise awareness in western Tennessee and western Kentucky,” Brent says. “The key to coping with Crohn’s Disease is people—talking with people who understand.”

###

Cheers,

Brent

JoshuaCrohn · July 2008

PissBottleMan wrote:

Just out of curiosity, have you come across any serious cases of patients taking Remicade.

I've frequented a few other health-type message boards and there are some folks that advise against taking it.

PBM

I was on remicade for 5 years, it usually put me in remission for a month or two. I would get it every 8 weeks (I think?), I had no other symptoms.

Another good one is Humira, other than that the only thing after are very risky drugs such as methotrexate. Usually the risks outweigh the benefits, I had my surgery last May 22nd

PissBottleMan · July 2008

While I was on vacation the folks from the hospital dropped off the upcoming commercial I taped about Crohn's back in May. It doesn't air on our tv station until the first week of November, but I got a copy of it on Friday afternoon and just now uploaded it on You Tube.

I only speak briefly at the end, but am featured in a lot of B-Roll shots. I am extremely excited that we're able to get the message about Crohn's and Colitis out there in this type of capacity.

This commercial was shot two days after our fund raising walk back in May.

Thanks for everyone's support.

Cheers,

PBM

DocChicago · July 2008

JoshuaCrohn wrote:

I was on remicade for 5 years, it usually put me in remission for a month or two. I would get it every 8 weeks (I think?), I had no other symptoms.

Another good one is Humira, other than that the only thing after are very risky drugs such as methotrexate. Usually the risks outweigh the benefits, I had my surgery last May 22nd

Not entirely true. Many patients are on azathioprine or 6-MP with good results. This is a cornerstone of IBD therapy.
For those on "biologics" like Remicade or Humira, there are 2 other new drugs just coming out.

Stephen Flow · July 2008

DocChicago wrote:

oh man. a few of my patients have done this. some of them learn a powerful lesson about the value of maintenance meds.

in the end, the decision is yours. i think your doc deserves to know you're not taking the meds though. not everybody flares when stopping maintenance meds, but it is more common than when people are on them.

if you have just colonic disease, your doc might consider Azulfidine. It's really old so it's cheaper. Some people have side effects, but if not then it's a good med.

Thanks for the input... Yeah I have an appointment with my doctor in August I think I am going to tell him that I stopped taking my meds... Although I did take some Prednisone this month, but only because I had a sinus infection and that's usually when my flare ups hit.... so I took a two week dosage of 10mg for a week then 5mg for another week basically to prevent any inflammation if there was going to be any.

Anyway, my doctor was dead set on me having Crohn's because when I was diagnosed I had a lesion on my leg, Arithema Nodosum (spelling?) and I guess that's almost a sure fire sign of Crohn's disease, plus it showed up in the colonoscopy.... but I've heard of people being misdiagnosed... so who knows... I think I might have him put me on something else though... Colozal really wears me out and even with insurance it's like 200 dollars for a months supply.

PissBottleMan · July 2008

DocChicago wrote:

Many patients are on azathioprine or 6-MP with good results.

I started out with that, but had to advance to Remicade. I'm suppose to take Azathioprine along with my Remicade but the last time I did that I became extremely fatigued.

My Gastro has informed me that azathioprine helps you from building up a resistance to Remicade.

PBM

PissBottleMan · August 2008

Here is the supplementary magazine article to the commercial I shot with Lourdes hospital back in the spring about Crohn’s Disease.

There's a short mention of the pre-show fundraisers and Pearl Jam towards the end.

I hope you enjoy it.

Cheers,

Brent

PissBottleMan · August 2008

A great Crohn's Cast dealing with depression and anxiety.

I encourage everyone to listen.

PBM

ninfan · August 2008

Stephen Flow wrote:

I was thinking what if my doctor misdiagnosed me?

Did you ever get a second opinion? Couldn't hurt to do so.

PissBottleMan · August 2008

ninfan wrote:

Did you ever get a second opinion? Couldn't hurt to do so.

I concur...I've had 3 different Gastro doctors in the past 8 years.

PBM

southerngarden · August 2008

came across this thread and just had to post...

i dont have crohn's but have Mitochodrial disorder linked with cyclical vommiting syndrome (c.v.s.) and gastropariesis (i always spell that one wrong). basically, i throw up for days on end periodically and often throw up after eating meals. im on various meds but it is a constant battle. in ways its very similar to chrohn's, i have a hard time with nutrition and keeping down meals. in other ways its very different, most of my problems are in the upper GI tract.

recently i started on a product called ulta inflam that says its for crohn's paitents. its a powder that i mix with a fruit smoothie. so far its been pretty good.

i just wanted to post and say hi and that its nice to know there is a guy like MIKE out there for all those who suffer from crazy diseases like us.

hope all is well in pearl jam land...

PissBottleMan · August 2008

southerngarden wrote:

recently i started on a product called ulta inflam that says its for crohn's paitents. its a powder that i mix with a fruit smoothie. so far its been pretty good.

Wow...I had never heard of your conditions...thanks for bringing it to our attention and I hope you are well.

I remember taking something shortly after my surgery that would help me cut down on my bathroom visits. It was a doctor prescribed powder that I mixed with Apple Juice. It helped, but it tasted so bad, I couldn't do it anymore. To this day, I can not drink Apple Juice.

PBM

PissBottleMan · August 2008

*Thanks to YIH for directing me to this article:

Iowa teen writes to battle illness

When Megan Albers was diagnosed with Crohn's disease three years ago, she thought it was all a bad dream. She's become a spokeswoman of sorts, talking about her experience at special events and with the media.

Most recently, she's published "The Attack of Mr. Crohn's," a first-person account of her first year with the disease.

PBM

joanieg · August 2008

I was diagnosed with Crohn's last year I have the benefit of living in Britain so have access to free healthcare, however this isn't good when they lose all your results. Just a question on medications I have never heard of remicide. I am currently on azathioprine to suppress the immune system, Salazopyrin for RA, prednisolone and various anti sickness drugs and painkillers. Nothing is working. Can you guys help, I have a follow up appointment in October I realise Crohn's is different for everybody but I feel I'm beating my head against a brick wall, just want to feel semi-normal again.

Crohn's Disease

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