Crohn's Disease

PJfanFORlife · May 2005

I have been fighting a flare up lately due to a narrowing in the bowel which the remicade has not been able to get rid of. I strongly suggest anyone with Crohns to monitor your diet. I have recently switched to an all organic diet for fear of colon cancer(to many chemicals in other foods). Emotional status plays a lot but when your are very sick, but it is hard to stay positive. I am fearing I may have to have ostomy surgery(I soooo don't want it) I am only 29 years old. Live each and every day as positive as you can. Surround yourself with those who love you. Talk to people about your self it, does help. Oh and weed has actually been beneficial to me over the years. Although I must say ONLY in moderation. Like any drug if you abuse it it will be bad for your condition. And DEFINATELY do not drink alcohol or do any man made drugs. I sometimes find myself getting depressed because I must take pharmaceutical products for the rest of my life. So I try to live as much of my life naturally as possible.

blackngold · May 2005

i guess i'm lucky with the severity of the crohn's i have. i pretty much live the typical college lifestyle of drinking about 40 beers a week and eating shitty food on the daily basis. i'm fine as long as i take my pentasa and purenthol. when i was younger (age 7 to 17) i would have a "flare-up" once a year. terrible times, quite painful. but ever since i got put on pentasa its been easy street.
good luck to everyone out there struggling with crohn's.

PJHabsfan · May 2005

Hey BlacknGold what is Purenthol?? I'm on Pentasa but have no idea what that is. I just take my daily Pentasa pills plus 2 multi-vitamins

Kaddikat · May 2005

PissBottleMan wrote:

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

*hugs to everyone posting/reading this thread*

for those that can: celebrate the fact that you CAN eat something..

:( my dad has Scleroderma, "or systemic sclerosis, is a chronic connective tissue disease generally classified as one of the autoimmune rheumatic diseases" (he was exposed to chemicals we think).. sometimes hes sick if he eats 2 ounces of soup (SOUP!!!) and he has to unclamp to empty his stomach :(

Here is the Sclero website http://scleroderma.org/ and this one too http://www.sclero.org/

He has SEVERE Gastroparesis, has a G-J tube attached to his stomach, he's also had 1.5 ft of intestine removed, had his intestines shut down completely only to 'start back up' again, blacks, pseudo blocks, reglan, nexium, TPN, 6 abdominal operations, weekly blood analysis due to daily TPN (feeding tube), hyperpigmentation, <insert the name of at least 10 other meds here> etc etc.. :( dad did the barium test and a lil of the barium is stuck... 3 months later...

have any of you guys had reactions/side effects from your meds? sometimes I wonder if my dads stomach probs/bathroom marathons are actually side effects?

PJfanFORlife · May 2005

When I first started coming to this board I never mentioned I had Crohns. I would like to thank PBM for starting this thread and making the members more aware. I feel we can all come here and talk freely. Just like support groups. If anyone ever wants to talk feel free to PM me or maybe we can all set up times and dates when we now we will be here and do exactly what is going on now. Communicate. I was diagnosed when I was 14 and didn't open up about my disease till I was 23ish. I am 29 now and I am very open. I have had 3 feet of bowel removed, been in the hospital many times, take 20 pills a day + remicade every 8 weeks, I have had more colonoscopies than I care to think of ,to name a few. Just talking about it makes me feel better. I feel love for everyone here!!!!

PissBottleMan · May 2005

I had a 1/4 of my colon removed 5 years ago. I too take many pills a day. I am suppose to start on Thursday, but I'm not sure that it's the direction I need to go right now.

Cheers to everyone who is posting.

PBM

blackngold · May 2005

Yo PJ Habsfan...Purenthol is a medication that my doctor told me works with pentasa...of the two pills its the one that does the work. my life has been great since i've been on it. i used to go to children's hospital in pittsburgh and they prescribed it to me there...this was over 6 yrs ago. now i'm 23 yrs old and i havent had a problem since i was 17. and from the previous posts i should have problems...i booze like a champ and eat shitty food on the daily basis.
my only problem is that i am graduating from PSU next week and i will no longer have insurance after may 31st. i am afraid that future insurance companies will turn me down because i have a "pre-existing" disease. that is bullshit.
but, to all of you with crohns with a worse degree of the disease than me, my heart goes out to you. i know what it is like to be sitting on the porcelean bowl and wishing that life was over. luckily i can lead a rock n roll life. hopefully this can give you hope for a better tomorrow.

freewheelin_mind · May 2005

i dunno what country you guys are in, but u have bad medicine. salazapyron is what i take, or took, after takeing that for about 7 years, i weened myself of it, and now i drink, eat bad food and smoke chop (despite doctors orders). its bad, i get more pain now im off it, like just like mike says "i can barely play a note " thats wat happend to me playin a gig once, i had to step out of the solo and just play chords, i cryed all night. but im okay now, anyway chek that medicine out with your doctor, surely hed no abuot it.

Cropdust · May 2005

blackngold wrote:

my only problem is that i am graduating from PSU next week and i will no longer have insurance after may 31st. i am afraid that future insurance companies will turn me down because i have a "pre-existing" disease. that is bullshit.

As a crohn sufferer myself i really wish you us citisens (and everyone else) could have the same healthsystem as we got here in denmark. We only have to pay for medicine and nothing else. And when we have paid a certain amount we only have to pay 15% of the price. It really helps alot to only think about getting well and nothing else.

Good luck to all of you

KAOS70 · May 2005

PissBottleMan wrote:

I had a 1/4 of my colon removed 5 years ago. I too take many pills a day. I am suppose to start on Thursday, but I'm not sure that it's the direction I need to go right now.

Cheers to everyone who is posting.

PBM

Cheers to you for battling this disease, I have Crohn's too. I am on 4 meds for it now & nothing is working so they said I might have to go back for another :eek: colonoscopy. I hate those things, everone says they don't hurt but they must have hit the point of inflammation during mine & it brought me right off the friggin' table! I've lost over 30 pounds since last summer, so I'm starting to get too skinny. I really must applaud Mike for being able to tour while living with Crohns. I think that in itself is a huge undertaking & also inspiring that he speaks out about it. I used to be embarrassed about it too, but now, it's just a part of life.

PissBottleMan · May 2005

blackngold wrote:

i am afraid that future insurance companies will turn me down because i have a "pre-existing" disease.

I ran into that problem soon after I was diagnosed. I changed jobs shortly after and didn't buy Cobra insurance. I went into the hospital a month after I changed my job. Luckily, my former employer stepped up to the plate and covered me.

I haven't been without insurance since then.

Still decided on Remicade. Doctor left it up to me. I don't have stomach pains right now. I started to take a multi-vitamin and I am feeling pretty good this week.

Cheers,

PBM

PissBottleMan · May 2005

Talked to doctor this afternoon and he wants me to have a colonoscopy before going on Remicade. Before I start this medicine, I want to make sure that my gut needs the help.

I'm taking Immuran and it seems to be doing the trick as of now.

Wish me luck.

PBM

Nothingbetter · May 2005

62strat wrote:

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

I have IBS as well. Why do you take so much fiber? I'd think you would want to keep that limited, as you're probably shitting a lot anyway (at least if you're like me).

Big Green Country · May 2005

Best of luck PBM, hope all works out well and to see you for some PJ shows in the future.

DeniseCK · May 2005

Hey, PBM,
My son is 10 and he's had Crohn's for 3 years. After 6 months on Prednisone, Asacol & Imuran, he'd still have horrible pain and bathroom visits. His Ped GI put him on Remicade, & it was like my normal boy was back with me! He felt better the next day! Of course, as the first 6 weeks ended, we could tell that he needed it again, and when the docs bumped the dose up to 8 weeks, he had to go back at 7 weeks to get another dose. That was a long time ago, and I'm happy to report that he's now gone 13 months without a Remicade treatment!! He's just now starting to get stomach aches again, but he's probably been eating too many chocolate chip cookies at school again. I have to be a food-nazi with him, but at school, he makes his own choices, sometimes not the best ones either.

I hope Remicade is as wonderful for you as it has been for my son, Alex. Just make sure that they give the infusion slowly, so your body can get used to it! They usually give my son tylenol and benedryl just in case there's a reaction, but he's never really had any trouble. I do have a friend who had a neurological reaction, & now she can't take it again. She did say that it was the best 2 weeks she's had with Crohn's in the past 15 years!
Good luck, and let me know how it goes!
Thanks also to Mike for coming out and raising awareness for the CCFA! My son has raised over $10,000 in the past 3 years for CCFA Research!!

Denise

Your_endorphin_rush · May 2005

In a world filled with turmoil and chaos there are stories like this one
that warms the heart and makes you shed a tear of joy.

You are truly blessed and your son,as well as others like him
are true heroes in this world.

all the best.

PissBottleMan · May 2005

http://www.nbc5.com/news/4487759/detail.html

Crohn's folks, please follow this link to a great story.

Also, I work at an NBC affiliate and suggested this story idea to my wife (who is a producer). We are running this story at 5. We are also going to localize it at 6.

The message is getting out there.

PBM

dont_go_on_me · May 2005

62strat wrote:

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

how does your body handle red sauces....foods like spaghetti, pizza, etc.? Do you get sick like 5 minutes after eating those foods?

also, an anal fisure doesn't sound like a good time at all. and i don't think any subject about your life is off limits is it!

onepjgir · May 2005

I have been learning more and more about this disease and I commend all of you who live with it. The disease is becoming more and more recognized and as many of you have mentioned there are many new drugs that have helped control the disease.

I work in the Medical Market Research field and it just so happens that my company is conducting studies on the subject of Crohn’s disease. If you are diagnosed or know someone who is diagnosed with Crohn’s disease and live in the Downtown Chicago or Center City Philadelphia area and would be interested in coming to a focus group in July you can PM me with your name and phone number and I’ll give you a call. If you qualify we will be paying about $75 for your time. I would love to help a PJ fan make a little extra money!

PissBottleMan · May 2005

Just had a chance to see the national story about Lacy's Law. Very good report and a courageous*young girl.

Check out our website later tonight to see if we post it:

http://www.wpsdtv.com

PBM

Crohn's Disease

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