Crohn's Disease

PissBottleMan · April 2005

Cropdust wrote:

Thumbs up to all in here..

I have crohn`s too. Was at my doctor today as i do every half year. My girlfriend and me talked last night about if i could start to slowly stop with the pills (immurel 4 years) because we want to start making baby`s next year. Instead he told me to double my dose because i have been flaring up since januar. Thats cool im a plumber so i always have a toilet nearby ;-)

PSB youre the man keep the spirit high..

My wife and I are starting to think about kids too. I've been on and off of Immuran for about a year now. Is it impossible for my wife to get pregnant if I'm on Immuran?

Thanks for posting in this thread...it's good to see Crohn's patients come together.

PBM

Cropdust · April 2005

PissBottleMan wrote:

My wife and I are starting to think about kids too. I've been on and off of Immuran for about a year now. Is it impossible for my wife to get pregnant if I'm on Immuran?

Thanks for posting in this thread...it's good to see Crohn's patients come together.

PBM

If immuran and imurel is the same then yes. Im from denmark and i dont know all the products you guys talk about in here. But here in denmark the doctors says that there are hundreds of baby`s being born every year with either moms or dads eating imurel. The mom and baby just have to be under control the whole 9 months to check if the baby is okay.
But i still want to be medicine free when its going to happen.

I have to say i really admire the whole community you got over there with all the benefits and all.. Here we dont have anything like that. Its more like tabu :-)

PissBottleMan · April 2005

Cropdust wrote:

I have to say i really admire the whole community you got over there with all the benefits and all.. Here we dont have anything like that. Its more like tabu :-)

Really? Well, I can see that though. It's not the greatest of subjects to talk about.

It's crucial to find others who share your experiences. I would like to get a chapter of the CCFA in my part of Kentucky so that I can get a support group going.

If you have questions or feel like venting, let me know.

PBM

Cropdust · April 2005

PissBottleMan wrote:

Really? Well, I can see that though. It's not the greatest of subjects to talk about.

It's crucial to find others who share your experiences. I would like to get a chapter of the CCFA in my part of Kentucky so that I can get a support group going.

If you have questions or feel like venting, let me know.

PBM

I sure will and you too.
Thanx man :-)

Poncier · April 2005

PissBottleMan wrote:

You know, after fasting last night, that Barium didn't taste too bad this morning. They have really improved on the taste.

Last time I had a C/T Scan(not Crohn's for me, post cancer screenings), they had a fruit flavored Barium which wasn't nearly as awful as the crap I'd had the displeasure of drinking for past tests, so they have improved it a bit.

My Dad had Crohn's, but was not properly diagnosed for about 30 years or so, he had an old fashioned GP doctor who just kept prescribing Xantac and finally he had to have a major portion of his intestine removed and was then properly diagnosed. Almost killed him, as he suffered a perferation after the surgery and my brother had to threaten his surgeon with bodily harm on a Saturday night to get him to the hospital to perform emergency surgery.

I'm gald to hear that the disease is more in the forefront nowadays, if it had been that way a generation ago my dad may have been properly diagnosed as a young man and had a much better quality of life.

Here's to all you guys getting the thing under control.

PissBottleMan · April 2005

Poncier wrote:

My Dad had Crohn's, but was not properly diagnosed for about 30 years or so, he had an old fashioned GP doctor who just kept prescribing Xantac and finally he had to have a major portion of his intestine removed and was then properly diagnosed. Almost killed him, as he suffered a perferation after the surgery and my brother had to threaten his surgeon with bodily harm on a Saturday night to get him to the hospital to perform emergency surgery.

That's unfortunate. I had to have emergency surgery too. I had 1/4 of my colon removed. I woke up one morning and couldn't get out of bed because of the pain. I don't usually panic, but that morning, I was freaking out.

I was in the hospital for about 2 weeks and stayed home to rest for another 2 weeks.

I have a nice "Zipper" scar on my stomach now.

PBM

Russty Cat · April 2005

Its so nice to see everyone giving each other support here.

I have Fibromyalgia which is also an auto immune disease and IBS. Both have been a bitch this month. Because of my immune system being down due to new experimental drugs they had me on I ended up with a bad lung infection and sinus infection, which became pneumonia. ARGH! I swear I'm so sick of taking meds that have side effects and don't work very well. Sometimes it just gets so frustrating. My legs are hurting so much today, I just want to cry. I have to get on a plane for a two hour flight tomorrow and I hope I can make it.

I admire you guys so much for your great attitude about having Chrons. My good friend has Chrons and I know how hard it can be. She's had tons of surgeries and struggles everyday with it. Sometimes trying to have a positive attitude is all you can do.

I talk to the doc this morning and told them they have got to do something. I'm back to being in pain all the time and not sleeping. And its so not cool being in the bathroom 24/7 for the rest of my family, we only have one bathroom. They better get me fixed up before September, cuz no matter what I'm going to Canada. Its gonna be a long ass trip though if we keep having to stop. lol

Seriously though I have to agree that diet is a huge thing. I had to totally change mine when I got diagnosed and it was probably the best thing I've done so far. I lost 60 lbs. and felt much better. My flare ups are alot less now too.

And for any gals out there who have auto immune diseases have your doc check on your horomone levels. When I was pregnant things got so much better. Before I was pregnant I had practically no hormone levels at all. It really affected my FMS.

JASGMMEV · April 2005

Cheers to you PBM for talking about Crohns and bringing the community together! When I joined this board I NEVER imagined that I'd be chatting about my Crohns. I guess we also have Mike to thank for helping with the dialogue.

PissBottleMan · April 2005

JASGMMEV wrote:

Cheers to you PBM for talking about Crohns and bringing the community together! When I joined this board I NEVER imagined that I'd be chatting about my Crohns. I guess we also have Mike to thank for helping with the dialogue.

Cheers to the fans who continue to support the cause! I remember the day I found out Mike had Crohn's...I couldn't believe it.

He has really brought this disease to the forefront and the charitable acts of the fans is really something

Russty Cat wrote:

And its so not cool being in the bathroom 24/7 for the rest of my family, we only have one bathroom.

My wife and I have been house hunting and it's a prerequisite that the homes we look at have at least a bath and a half.

PBM

L0VeB0ATCApTA1N · April 2005

Both of my brother-in-laws have crohns. It is a pretty scarey thing to visit one month and see a healthy happy person only to visit a month later to see a depressed, sick, ghost of a person. My one brother in law has spurts of bad times and flares ups, and had been taking prednisone for a while. This drug makes him very irratable and hard to live with(my sisters' account), but it helped clear up the problems. Actually I have witnessed my brother-in-law lose up to 40 pounds on three separate occasions, but he always comes out of it ok and at a healthy weight and colour.

Good luck to you all and I wish the best for you.

PS Mike rules.

PJChic9 · April 2005

Ya, I been meaning to check out that site on crohns, and it was very informative...... Props to all of you and mc cready for coping with it.

I actually have to go to a gastrointestinal (sp?) doc soon, Ive been on zantc and liborax for liek 2 years, and my stomach is just getting worse, especialyl the last 3-4 weeks, its been so crappy i dunno why, i dunno if i have something wrong w/ me besides what theyre already giving me medicine for, but itd be nice to know. ( that would suck if it were crohns, ugh, but stomach bleeding and ulcers run in ym family so i dunno.... oh ya and that part about american jews of european descent getting it 4-5 times more likely? whoah... my dads side of the famiyl is jewish... im actually a irish english french greman austrian russian jew/catholic if u can believe it..lol..I called a few places today and none of em could get me in until the end of may or june, i wa slike omg wtf....my tummy hurts!!

not to mention, i have to get a renal ultrasound, ivp, ct scan, go to a neurologist, and allergist, and pretty much gotta do all this crap at once... oh ya and bloodwork done for like the 7th time this year, ugh

I know people have it way worse off than me, and im grateful, but sometimes, im like wtf i have so many little problems it suxass...

sorry had to bitch, everyone take care of themsleves, appreciate your health, and rock on:)

PissBottleMan · May 2005

I'm making a shirt for the Canadian tour, so you'll be able to identify me.

It reads:

I Shit and I Stink, I'm real join the club.

PBM

Barely Alive · May 2005

Crohn's sufferer here. When I found out Mike had it I almost fell off my chair because A. I wouldn't wish it on anybody, and B. I knew he could speak out and be a voice, which he has been.

I was diagnosed on the operating table during emergency surgery after a few misdiagnosis going more than a few years back at the time. Had relapses here and there, but not chronic in nature at all. 13 years later at 30 years old and I eat what I want, when I want, how I want. Drank the same way as well. I was on a maintenance level perscription of Pentasa/Mesalamine for a number of years, but took myself off of it at my doctor's go ahead some time ago. I have the occassional occurrence very three months, but they are very mild and I knowe myself well enough know to start popping some Pentasa to derail it before it can really take hold and flare up. I then curtail the diet for a few days and go into a 'respect the disease" mode. Not so bad for me, but I know many others who can't get around it for even a day.

PissBottleMan · May 2005

Glad to hear your story Barely Alive.

I start on Remicade next week and I'm looking forward to it.

Anything to boost my energy.

I agree with you 100% on finding out that Mike had Crohn's. What are the odds that someone in your favorite band has the same disease that you do? I was shocked and comforted.

The message is getting out there and hopefully, research will progress enough to find a cure.

Thanks for posting.

PBM

00jeffree · May 2005

PissBottleMan wrote:

I'm making a shirt for the Canadian tour, so you'll be able to identify me.

It reads:

I Shit and I Stink, I'm real join the club.

PBM

friggin schweet! i am so buying you a mountain dew.

SENROCK · May 2005

PissBottleMan wrote:

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

you ROCK PBM!!!!!! and bro......WE ARE FINDING A CURE!!!!!!!

PissBottleMan · May 2005

I gotta keep this up at the top. I have heard from so many Crohn's patients that are lurkers and not posters.

Please feel free to post in this thread. Share you stories and experiences.

This applies to family members as well.

Cheers,

PBM

riot_dog · May 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.......

Coke does it to my Crohns. With me, I can't drink any dark colored drinks. I normally don't have a problem with Tea if it's light. Cheese Whiz, now that kicks my ass up and down the street.

PJfanFORlife · May 2005

I have had Crohns for 15 years and have been on Remicade the last 3. Good luck in your quest for remission.

PJHabsfan · May 2005

My story is very similar to one of the posts above. Last year i went on a trip to Mexico and got the usual "Tourist Trots" or Montezuma's Revenge whatever ya wanna call it and thought nothin of it at the time. However I got back to Canada and it just wouldn't get better. All summer i felt like a bag of shit and my doctor just kept telling me don't worry its probably just a bug you picked up it will pass........well it didn't and last Fall I finally had a scope done and found out I had Crohn's(thankfully a Mild case so far) I was worried about having a Chronic Disease with no cure but relieved as well to finally know what the hell was wrong with me. It's weird too cause they say Crohn's is genetic but we can't track anyone in my Family who has had it.

Ever since that diagnosis they put me on Pentasa and I've felt great(knock on wood)!!! I eat pretty much what I want(minus the spicy foods I used to love) and Still have a drink now and then but not like I used to party and thats hard for a Maritime Boy. I've only had minor flareups and nothing that even came close to how I felt last summer. I'm just hopeful a cure will be found and that my condition doesn't worsen. Right now I wouldn't even know I had Crohn's if I wasnt popping pills everyday for Maintenance.

I'm curious if any of the longterm sufferers started this way and got worse? cause I'm sure as the years go by the more flareups that happen the more scarred the intestine will get and hopefully surgery won't be necessary. My Doctor told me its hard to say because the disease is so unpredictable. Some people have it mild their whole life and others suffer severely.

Here's to hoping that all of you feel better and whenever your down just blast some PJ and it'll brighten your day!! Can't wait for PJ in Halifax!!!

Crohn's Disease

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