Crohn's Disease

PissBottleMan · April 2005

Just an update on my diagnosis. I saw my gastroenterologist today and I am suppose to start Remicade on May 12.

Basically with Crohn's, your immune system attacks your body. Remicade suppresses your immune system. So, while I am more prone to infections, hopefully, I will start to feel better.

I know many of you support various CCFA causes because of the outspoken awareness of Mike. Thanks for all your encouraging words and donations.

Hopefully, I will be up to speed this September. While I won't be able to toss back any Canadian beer, I will toast a Mountain Dew (just as bad for me) with you.

Cheers to the fans, the band and Mike.

Sincerely,

PissBottleMan

62strat · April 2005

While i dont have crohsn, i do have IBS (irritable bowel syndrome) and takeshitloads of fiber a day. i can only imagine how painful crohns bcan be, i know when i get struck...im out!! painfull...

and currently have an anal fisure to boot:)
hehe

Riverrunner · April 2005

A couple of questions. If these are too personal don't respond.

Why is alcohol a no-no with Crohn's or is it due to the Remicade?

Why do you have to wait until 5/12 to start the Remicade?

I have never really understood Crohn's? I know the symptoms are similar to IBS (which B has), but is much more serious. I did not know that Crohn's was an auto-immune disease until I read your post. Is it your body attacking the lining of your stomach or something?

JASGMMEV · April 2005

People I know who are on Remicade do well with it and it helps a lot. Good luck to you!

Mountain Dew???? That would put me and my Crohns in bed for a week.......

PissBottleMan · April 2005

Doctors always recommend not drinking and smoking if a person has crohn's. I don't drink that much (a handful of times every year). Things like alcohol, caffine and stress set off flare ups. So if I can avoid those things, I try (again, I am a Mt. Dew junkie), but it doesn't always work.

I can't take Remicade until the 12th because I have to get a C/T scan at Lourdes tomorrow morning to make sure I don't have any infections in my gut. Plus, I had to have a tuberculosis test today and those results won't be in until Saturday. Doctor wants to make sure I don't have any under lying infections before he starts me on an immune suppressant.

The Remicade is an IV infussion. Each infussion takes around 4 hours. You get them every 6-8 weeks.

I am 28 and I've already had 3 colonoscopy's and 2 endoscopy's.

I'm hoping this will give me more energy and increase my quality of life.

PBM

62strat · April 2005

JASGMMEV wrote:

People I know who are on Remicade do well with it and it helps a lot. Good luck to you!

Mountain Dew???? That would put me and my Crohns in bed for a week.......

ha. i used to drink mountain dew all day long...wonder why i got sick!!

that shit is terrible, i would get sick sooooooo much by drinking that shit. havent had one for 6 years now or somethingl ike that

00jeffree · April 2005

Riverrunner wrote:

A couple of questions. If these are too personal don't respond.

Why is alcohol a no-no with Crohn's or is it due to the Remicade?

Why do you have to wait until 5/12 to start the Remicade?

I have never really understood Crohn's? I know the symptoms are similar to IBS (which B has), but is much more serious. I did not know that Crohn's was an auto-immune disease until I read your post. Is it your body attacking the lining of your stomach or something?

http://www.ccfa.org

go to "disease information" it's a start.

my bro has crohn's since '98

Riverrunner · April 2005

00jeffree wrote:

http://www.ccfa.org go to "disease information" it's a start.

my bro has crohn's since '98

Thank you. That was very informative. I was really surprised to learn that it was an auto-immune type thing, i.e. like arthritis, lupus, ms, etc.

PissBottleMan · April 2005

Riverrunner wrote:

arthritis

The good thing is that the Remicade will help with my arthritis. I started on Vioxx...gone, then Bextra...gone, now I'm on Celebrex. I'm waiting for them to pull that.

PBM

00jeffree · April 2005

Riverrunner wrote:

Thank you. That was very informative. I was really surprised to learn that it was an auto-immune type thing, i.e. like arthritis, lupus, ms, etc.

yeah, once my bro developed chron's he got rhumatoid (sp?) arthritis shortly after that. you deal with pain continually, either in your joints or in your stomach . . . . i know i take my health for granted. good thread PBM, thanks for bringing some attention to this topic. and god bless Mikey for his strength and engery in supporting this cause. take care.

PissBottleMan · April 2005

00jeffree wrote:

y good thread PBM, thanks for bringing some attention to this topic. and god bless Mikey for his strength and engery in supporting this cause. take care.

Seriously, think about it. I can handle the disease because I have a semi-low stress job. Imagine having Crohn's while touring the country/world. You have to keep a sharpe eye on your diet.

Playing in front of thousands of fans every night? Talk about stress.

I don't think that applies to Mikey because he seems to be having fun at every show.

However, what if, during the middle of a solo in Evenflow, he has to go to the bathroom.

So the next time that Pearl Jam takes an extra few minutes between encores, give them a break...Mike could be going to the bathroom.

PBM

Riverrunner · April 2005

PissBottleMan wrote:

The good thing is that the Remicade will help with my arthritis. I started on Vioxx...gone, then Bextra...gone, now I'm on Celebrex. I'm waiting for them to pull that.

PBM

With my most recent running injury the doc put me on Mobic. I had never heard of it before. However, I think Ibuprofen worked better than the Mobic. Ibuprofen has always worked for me anyway. I also have arthritis (osteoarthritis) - mostly in my spine that I know of. The last time there was an x-ray it said "moderate degeneration." Considering I was only about 37 at the time I thought that wasn't good. Of course, I am not comparing any of my ailments to yours. Mine are nothing to complain of. Yours are something to complain about, and I am sorry that you have Crohn's AND arthritis. Anyway, I was on Celebrex, but Ibuprofen always worked better. I went on Vioxx for a while and it worked really well, but that caused muscle weakness so much that it affected my running. It took me a while to figure it out. When I did, I quit Vioxx and my muscles came back. Anyway, it is only Ibuprofen for me - as long as my stomach holds out. Does Ibuprofen make the IBD worse?

PissBottleMan · April 2005

Riverrunner wrote:

Does Ibuprofen make the IBD worse?

Yeah. Actually, I shouldn't be taking Vioxx, Bextra or Celebrex. All of those drugs mess up your stomach.

But, sometimes you have to prioritize.

The bad thing for me is that I've gained a lot of weight...which is odd for Crohn's patients. Usually, it's the other way around.

I asked my doctor and he said it could be brought on by depression from having a Crohnic illness.

PBM

00jeffree · April 2005

PissBottleMan wrote:

The good thing is that the Remicade will help with my arthritis. I started on Vioxx...gone, then Bextra...gone, now I'm on Celebrex. I'm waiting for them to pull that.

PBM

one day the symptoms fade
think i'll throw these pills away

PissBottleMan · April 2005

00jeffree wrote:

one day the symptoms fade
think i'll throw these pills away

Exactly, my friend.

Cheers to you and your family.

PBM

Porch · April 2005

I am glad to hear you are getting things under control! I have been following it since i have alot of the same issues you do... I have an appt and some tests next week to finally find out what it is...without giving any gory details lets just say i have problems from entry to exit;) severe pain , mucous, bloating, cramps and lots of other fun things... the last few weeks have been horrific though... I feel for you! take care and keep us posted!

PissBottleMan · April 2005

Porch wrote:

I am glad to hear you are getting things under control! I have been following it since i have alot of the same issues you do... I have an appt and some tests next week to finally find out what it is...without giving any gory details lets just say i have problems from entry to exit;) severe pain , mucous, bloating, cramps and lots of other fun things... the last few weeks have been horrific though... I feel for you! take care and keep us posted!

Hey man, I used to be embarrassed about going to the bathroom all the time. I just had to shake that off.

Now, I tuck the paper under my arm and head to the restroom at work. I am comfortable at home and at work, but I don't like going out a lot. I am always looking for the bathroom when I go somewhere.

If I know that I'll be away from a bathroom for a long period of time, I will avoid food/drinks and take immodium.

I know your pain man. Keep us updated on your status.

Keeping positive is crucial. I have days where I am so exhausted I can barely sit at my desk, but I carry on.

Thumbs up my friend.

PBM

jgcartman2 · April 2005

All happened about 4 years ago oddly enough after the last Pearl Jam concert that was at the Air Canada Centre.

I started having these sharp stabbing pains in my stomach and I went to the doctor he found nothing odd and just chalked it up to "blocked gas"

So I continued working. Such as I do I have an extremely high pain tolerance. This time it did not go in my favour. Turns out about a week after the doctor visit my intestine burst from being flared up so much. TWO MONTHS later the pain got to the point where I couldn't tolerate it......(yes i'm an idiot for not doing anything but thats just the way I am).....anyways after all the tests are done the doctor tells that if I would've waited another few weeks there is a high possibility that I could've died.

Now i've lived with Crohn's for 4 years and I've gone through a huge denial period and the only things i've stayed away from is caffiene, alcohol and smoking (never smoked in the first place....well cigarettes that is. ;D) It didn't do me any good at all i was really hurting myself and lucky enough that nothing flared up again. But a few months ago I came to the realization that I can't keep hurting myself anymore I just had to accept it and I have. Since that time I totally switched my diet and became a vegetarian and in the 2 months of doing that I dropped 40 pounds and feel healthier then ever before even before I got sick.

So i commend anyone fighting Crohn's or any other disease the first and hardest step is coming to terms with it.

thanks.
J

00jeffree · April 2005

jgcartman2 wrote:

So i commend anyone fighting Crohn's or any other disease the first and hardest step is coming to terms with it.

thanks.
J

great post. stay strong and positive J! take care.

PissBottleMan · April 2005

jgcartman2 wrote:

So i commend anyone fighting Crohn's or any other disease the first and hardest step is coming to terms with it.

thanks.
J

I commend you on your strength. I am really stubborn when it comes to this disease. I don't want to give up McDonalds hamburgers, Mountain Dew and Chocolate.

I know it's bad for me, but I enjoy those things.

A proper diet is extremely important, but I am locked into this fast food mentality.

Thanks for sharing your story. It makes dealing with the disease much easier when you know there are other folks dealing with the same issues.

PBM

Riverrunner · April 2005

I read on the website about how many people suffer from IBD. When you add that to the number of people that have IBS, you all are not a tiny minority, are you? My husband has IBS, and I don't want to compare that to Crohn's, but the symptoms are similar. He went through a very bad time, until it was diagnosed. He is now pretty much stable on Levbid, but he has to take it twice per day or he has problems. Also, he has flare-ups that last a few days. For a while he hated to get out in public because he never knew when he would "have a spell." So I feel for you guys.

Crohn's Disease

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