Crohn's Disease

PissBottleMan

joanieg wrote:

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

PissBottleMan

A great podcast about coping with Crohn's disease.

Check it out.

PBM

tragibigzanda

joanieg wrote:

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.

Best of luck,
Alex

PissBottleMan

alexmac11 wrote:

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

southerngarden

PissBottleMan wrote:

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.

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...

PissBottleMan

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

Heatherj43

Oops, double posted.

Heatherj43

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

DocChicago

PissBottleMan wrote:

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.

PissBottleMan

Heather,

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

PissBottleMan

DocChicago wrote:

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.

I can not recall the name of what I took...this was around 2001. I drank that stuff for...maybe 6 months. After that, I decided I would rather live with frequent bathroom visits than drank that vile concoction.

PBM

Heatherj43

PissBottleMan wrote:

Heather,

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

The local university is Wayne State. They are good in my opinion. I am going to go there first. If they can't help then I will go to U of M. At this point I have very few choices. People are suppose to eat. Thanks.

PissBottleMan

Heatherj43 wrote:

The local university is Wayne State. They are good in my opinion. I am going to go there first. If they can't help then I will go to U of M. At this point I have very few choices. People are suppose to eat. Thanks.

U of M is suppose to be top-notch aren't they? Do you need a referral to get an appointment?

I think I had to be referred from my family doctor to Vanderbilt when I had my Ankylosing spondylitis checked out.

PBM

Heatherj43

PissBottleMan wrote:

U of M is suppose to be top-notch aren't they? Do you need a referral to get an appointment?

I think I had to be referred from my family doctor to Vanderbilt when I had my Ankylosing spondylitis checked out.

PBM

Yeah I need a referral, but the docs here will easily give me one. They are at wits end.