Crohn's Disease

PissBottleMan

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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.

PissBottleMan

Riverrunner wrote:

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.

Like I mentioned earlier, unless I am familiar with the surroundings, I don't go to many social functions.

If I know I am going to be out, I take the necessary precautions.

PBM

DopeyBoy

You guys are troopers. I've known a few people with Crohn's, and I know its no fun.
So you're going on Remicade though eh? God, I hope you have good insurance! I work in insurance, and I know that stuff is pricey! Also hard to get covered.
Anyway, keep on trucking guys!

Peace
:-p

PissBottleMan

Yeah, I have insurance and luckily, I have met my deductable this year, so it's 80/20 from here on out.

How much does one treatment cost?

I have to stay on top of my coverage because I have a pre-existing condition. If I drop insurance for one day, I won't get covered.

PBM

JenInTheBx

My sister had problems with her stomach for YEARS... she would constantly be crying in pain, but never went to a doctor to get it checked out. I read some of your stories a year or so ago, heard about Mike, etc... and finally got my sister to go get checked out, and she was diagnosed with IBS. Now that she knows what's wrong, she takes care of herself better. I know that's not as bad as Chron's, but after seeing what she went through, I commend you all for being so strong and also for sharing your stories with each other- it's probably a great support system, and it gets the word out.

PissBottleMan

JenInTheBx wrote:

My sister had problems with her stomach for YEARS... she would constantly be crying in pain, but never went to a doctor to get it checked out. I read some of your stories a year or so ago, heard about Mike, etc... and finally got my sister to go get checked out, and she was diagnosed with IBS. Now that she knows what's wrong, she takes care of herself better. I know that's not as bad as Chron's, but after seeing what she went through, I commend you all for being so strong and also for sharing your stories with each other- it's probably a great support system, and it gets the word out.

Just knowing that you're not the only one helps tremendously. When Mike announced that he has dealt with the diesease for over 15 years, I felt a sigh of relief.

He has brought awareness...I know that I'm not alone. Plus, there's been more discussion on this board and more charitable events.

PBM

dontgimmenolip

PissBottleMan wrote:

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

I know how you feel about having to give things up. When my doc told me that the reason my right foot kept swelling out of nowhere was gout, I was really bothered. I was under the impression that gout was only something that 60 year old boozehounds contracted.

Then he dropped the bomb on me about what I'm not supposed to eat. I haven't had shrimp in two years, and I'm supposed to go real easy on beef.

I wasn't much of a drinker before, but since my gout diagnosis, I won't drink anything but an occasional glass of wine. Thankfully, by being careful about what I eat, my flare-ups are pretty much just stiffness in my toe and the occasional ankle pain.

I wish you the best of luck PBM, and I commend your strength.

jgcartman2

was the one huge difference when I was diagnosed.

The doctor just looked at me.....cold faced......(of course i was on the edge of freaking out) and he says "you'll be going to the bathroom quite a lot more."

I'm thinking.....thats why were cold faced??? buddy please my time in the bathroom is what I consider "al bundy" time but the only thing i didn't like was second guessing going out much like PBM I always had to be wondering just when i'd have to go to the bathroom again. But you learn to live with it like all the other things.....I have people say "how can you go inside a public washroom and do you business??" I just say "hey its flushes.....works for me!"

i've had to keep a very broad and sometimes twisted sense of humour with this whole thing and that is one sure cure because nothing kills laughter (well except for a bad joke that is but then you just end up laughing at the person that told it....much like now.....i'll stop)

Thanks again,

Josh or J

PissBottleMan

dontgimmenolip wrote:

I know how you feel about having to give things up. When my doc told me that the reason my right foot kept swelling out of nowhere was gout, I was really bothered. I was under the impression that gout was only something that 60 year old boozehounds contracted.

Then he dropped the bomb on me about what I'm not supposed to eat. I haven't had shrimp in two years, and I'm supposed to go real easy on beef.

I wasn't much of a drinker before, but since my gout diagnosis, I won't drink anything but an occasional glass of wine. Thankfully, by being careful about what I eat, my flare-ups are pretty much just stiffness in my toe and the occasional ankle pain.

I wish you the best of luck PBM, and I commend your strength.

Hey man, cheers to you.

It's all about having great friends and family who understand and support you.

"I'm lost, I'm no guide...but I'm by your side. I am right by your side."

PBM

PissBottleMan

jgcartman2 wrote:

But you learn to live with it like all the other things.....I have people say "how can you go inside a public washroom and do you business??" I just say "hey its flushes.....works for me!"

i've had to keep a very broad and sometimes twisted sense of humour with this whole thing and that is one sure cure because nothing kills laughter (well except for a bad joke that is but then you just end up laughing at the person that told it....much like now.....i'll stop)

Man, I get that question a lot: "How can you use a toliet in this place?" If I don't, I'll shit my pants.



At parties, I stink up the whole house, but I joke about it. My friends and family know and they are supportive and joke with me.

Attitude....it's what it's about.

PBM

rarghrargh-brownstar

Thanks soo much for sharing this!!! I dont know if this disease gets enough attention so thanks for letting us know of it, and how you are doing.

Hope that you keep gettin better!

As much as i love our beer......:rolleyes:.......I think you will be juuust fine
Canadian Dry Gingerale is also great :d


This is awesome! I am sure that there are many others going through this and feel better that they can relate with someone. Thanks again.