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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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.
It is time to admit that we used to rock like hurricanes. It is time to run for the hills and go round and round. It is time for us to shout at the devil. We've got the right to choose it, there ain't no way we'll lose it, and we're not gonna take it anymore.
- C. Klosterman
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.
It is time to admit that we used to rock like hurricanes. It is time to run for the hills and go round and round. It is time for us to shout at the devil. We've got the right to choose it, there ain't no way we'll lose it, and we're not gonna take it anymore.
- C. Klosterman
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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.
It is time to admit that we used to rock like hurricanes. It is time to run for the hills and go round and round. It is time for us to shout at the devil. We've got the right to choose it, there ain't no way we'll lose it, and we're not gonna take it anymore.
- C. Klosterman
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.
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
A great Crohn's Cast dealing with depression and anxiety.
I encourage everyone to listen.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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.
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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.
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.
Thanks for posting...that's what this thread is for.
I was first put on Pentasa and Prednisone when I was first diagnosed...while the Prednisone helped the inflammation, it also caused some side effects.
I had a surgery to remove part of my colon about 6 months after diagnosis because I had a colon obstruction.
While my Crohn's wasn't cured, the diseased part of my colon was removed and I was relieved of pain and the symptoms from it.
In '02, a colonosocpy showed that the Crohn's had returned and I was then put on Azathioprine.
That medicine worked fine for a few years until I had a bad flare in Jan '05. My Gastro doctor then recommended Remicade (an IV infusion administered every 6 to 8 weeks).
Since then, I have not had any gut problems. I'm not saying it's a cure all, but it has helped my situation.
There is a chance my body will build up a resistance to Remicade and I'll have to discuss further options with my doctor. Actually, you're suppose to continue to take Azathioprine while taking Remicade in order to fend off this resistance.
I know your frustration. Don't give up...if you don't feel like you're getting the answers you want from your doctor, seek a second or third opinion.
Cheers,
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
A great podcast about coping with Crohn's disease.
Check it out.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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.
Hey everybody. First of all, I wish everyone who's suffering from Crohn's/IBS/colitis/etc a happy & healthy life. I'm pretty familiar with these conditions, as both an ex-girlfriend and best friend have suffered with Crohn's for their entire lives, and my little sister has spent this past year in and out of hospitals as a result from her colitis. She had her large intestine removed in December, and was on a colostomy bag until about five weeks ago, at which point they completed her j-pouch reversal surgery (and she's still got a loooong way to go...)
But to Joanieg, I wanted to say that this really isn't the best place to have your questions answered. There are far superior message boards out there for people with Crohn's and other bowel diseases, and it's important to remember that no two cases will ever be the same. I'm familiar with all of the drugs you mentioned, and I'd be giving you my second-hand experience with them; from browsing this thread, it seems like there would be some others who could offer insight, too. But if you haven't done so already, I really encourage you to check out some of the other sites on the net. You'll have a LOT more people to talk to who could help you understand your situation.
But to Joanieg, I wanted to say that this really isn't the best place to have your questions answered.
I would agree with this statement. This is just a thread to share stories and get insight as to what others are going through.
I would also suggest consulting your gastroenterologist for medical advice.
Cheers,
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
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
like chron's disease, cyclic vomiting syndrome, isnt very widely known. only recently has there been an upsurge in the amount of cases and knowledge being spread through the medical community. there are only 4-5 doctors in the country who specialize in CVS, and some of them only do reasearch.
I had a pretty good run for a while. I made it through most of the spring and summer months without having a really bad flare. My flares don't really involve a lot of pain in my gut. Rather, my body (and mind), because of the disease, get tired easily which leads to other problems.
When you have little energy, you don't feel like doing anything. In my case, this can lead to malaise. I hesitate to use the word "depression", but you definitely feel down.
I, using bad judgment, relied heavily on a lot of caffeine (Coffee) to give me the missing boost that I needed. This, obviously made the problem worse.
So, I decided to find a better solution. I've started on a multi-vitamin which has helped to pep me up a little. Also, thanks in part to my wife, I've started walking more at night to get a little exercise.
The point of this post is to remind myself to take better care of my body and to reassure others that there will be times when you just don't feel like yourself.
Take time to find ways to relax, relieve stress/tension and take care of yourself mentally and physically.
Another round of Remicade next Tuesday...so, more help on the way.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Hi all, I've had a rough time with my digestive tract for the past year, thats why I haven't been here. Been in the hospital 8 times since July. The surgeon is recomending I go to U of M docs. Its quite a drive for me and I just can't afford to go back and forth. I don't eat anymore. I drink lots of Ensure. I've had approx. 5 meals since July. Eating makes me very ill. Ensure has kept my nutrients okay. Potassium is the only thing I have problems with by not eating. Its usually too low, but has been too high also.
I may go to a university that is closer for care. The surgeon, who graduated from the local university, says I should go to U of M not the local one, but when I couldn't get good care for my seizures, the local one got them under control.
I am finding medical care is not very good anywhere.
Hi to all and hope to get around here more often.
Love, Heather
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
This sounds like cholestyramine. It binds bile acids if you've had your ileum removed (the ileum normally reborbs the bile acids, which can irritate the colon). But it tastes like ass.
It is time to admit that we used to rock like hurricanes. It is time to run for the hills and go round and round. It is time for us to shout at the devil. We've got the right to choose it, there ain't no way we'll lose it, and we're not gonna take it anymore.
- C. Klosterman
I'm speaking as a layman here, but I would rather travel to Vanderbilt for medical attention than go to local doctors in town.
Most of the time, I rely on local doctors because it's convenient and I already have my diagnosis.
However, if I were having problems and needed medical care, I would try to go someplace that specializes in medical studies (like U of M). Doc Chicago may disagree, but I don't have too much faith in local practices...just my opinion.
PBM
"We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"
Comments
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
Wishlist Foundation: http://wishlistfoundation.org
- C. Klosterman
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.
- C. Klosterman
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
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
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
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
Wishlist Foundation: http://wishlistfoundation.org
For those on "biologics" like Remicade or Humira, there are 2 other new drugs just coming out.
- C. Klosterman
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.
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
Wishlist Foundation: http://wishlistfoundation.org
There's a short mention of the pre-show fundraisers and Pearl Jam towards the end.
I hope you enjoy it.
Cheers,
Brent
Wishlist Foundation: http://wishlistfoundation.org
I encourage everyone to listen.
PBM
Wishlist Foundation: http://wishlistfoundation.org
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
Wishlist Foundation: http://wishlistfoundation.org
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...
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
Wishlist Foundation: http://wishlistfoundation.org
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
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Thanks for posting...that's what this thread is for.
I was first put on Pentasa and Prednisone when I was first diagnosed...while the Prednisone helped the inflammation, it also caused some side effects.
I had a surgery to remove part of my colon about 6 months after diagnosis because I had a colon obstruction.
While my Crohn's wasn't cured, the diseased part of my colon was removed and I was relieved of pain and the symptoms from it.
In '02, a colonosocpy showed that the Crohn's had returned and I was then put on Azathioprine.
That medicine worked fine for a few years until I had a bad flare in Jan '05. My Gastro doctor then recommended Remicade (an IV infusion administered every 6 to 8 weeks).
Since then, I have not had any gut problems. I'm not saying it's a cure all, but it has helped my situation.
There is a chance my body will build up a resistance to Remicade and I'll have to discuss further options with my doctor. Actually, you're suppose to continue to take Azathioprine while taking Remicade in order to fend off this resistance.
I know your frustration. Don't give up...if you don't feel like you're getting the answers you want from your doctor, seek a second or third opinion.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
Check it out.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Hey everybody. First of all, I wish everyone who's suffering from Crohn's/IBS/colitis/etc a happy & healthy life. I'm pretty familiar with these conditions, as both an ex-girlfriend and best friend have suffered with Crohn's for their entire lives, and my little sister has spent this past year in and out of hospitals as a result from her colitis. She had her large intestine removed in December, and was on a colostomy bag until about five weeks ago, at which point they completed her j-pouch reversal surgery (and she's still got a loooong way to go...)
But to Joanieg, I wanted to say that this really isn't the best place to have your questions answered. There are far superior message boards out there for people with Crohn's and other bowel diseases, and it's important to remember that no two cases will ever be the same. I'm familiar with all of the drugs you mentioned, and I'd be giving you my second-hand experience with them; from browsing this thread, it seems like there would be some others who could offer insight, too. But if you haven't done so already, I really encourage you to check out some of the other sites on the net. You'll have a LOT more people to talk to who could help you understand your situation.
Best of luck,
Alex
I would agree with this statement. This is just a thread to share stories and get insight as to what others are going through.
I would also suggest consulting your gastroenterologist for medical advice.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
like chron's disease, cyclic vomiting syndrome, isnt very widely known. only recently has there been an upsurge in the amount of cases and knowledge being spread through the medical community. there are only 4-5 doctors in the country who specialize in CVS, and some of them only do reasearch.
plenty of info at: http://www.cvsaonline.org/
yep we probably drank the same stuff...i mix mine with a huge frozen fruit and soy smoothie every morning so ive gotten used to the taste...
best of luck to you...
When you have little energy, you don't feel like doing anything. In my case, this can lead to malaise. I hesitate to use the word "depression", but you definitely feel down.
I, using bad judgment, relied heavily on a lot of caffeine (Coffee) to give me the missing boost that I needed. This, obviously made the problem worse.
So, I decided to find a better solution. I've started on a multi-vitamin which has helped to pep me up a little. Also, thanks in part to my wife, I've started walking more at night to get a little exercise.
The point of this post is to remind myself to take better care of my body and to reassure others that there will be times when you just don't feel like yourself.
Take time to find ways to relax, relieve stress/tension and take care of yourself mentally and physically.
Another round of Remicade next Tuesday...so, more help on the way.
PBM
Wishlist Foundation: http://wishlistfoundation.org
I may go to a university that is closer for care. The surgeon, who graduated from the local university, says I should go to U of M not the local one, but when I couldn't get good care for my seizures, the local one got them under control.
I am finding medical care is not very good anywhere.
Hi to all and hope to get around here more often.
Love, Heather
- C. Klosterman
I'm speaking as a layman here, but I would rather travel to Vanderbilt for medical attention than go to local doctors in town.
Most of the time, I rely on local doctors because it's convenient and I already have my diagnosis.
However, if I were having problems and needed medical care, I would try to go someplace that specializes in medical studies (like U of M). Doc Chicago may disagree, but I don't have too much faith in local practices...just my opinion.
PBM
Wishlist Foundation: http://wishlistfoundation.org