Crohn's Disease

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  • PJfanFORlifePJfanFORlife Posts: 138
    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.
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
  • blackngoldblackngold Posts: 264
    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.
  • PJHabsfanPJHabsfan Posts: 2
    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
  • KaddikatKaddikat Posts: 1,194
    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?
    **Get outa my way, just step aside, or pay the price ~ AC/DC**

    You make me feel uncalm and I think I like it - 311

    JEFF ROX MY SOX!

    "Jeff is just a badass all the way across the board" ~aNiMaL~

    "Chill out Kaddikat"
  • PJfanFORlifePJfanFORlife Posts: 138
    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!!!!
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
  • PissBottleManPissBottleMan Posts: 4,154
    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
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • blackngoldblackngold Posts: 264
    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.
  • 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.
    But you break like a little girl.
  • CropdustCropdust Posts: 4
    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
  • KAOS70KAOS70 Posts: 20
    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.
  • PissBottleManPissBottleMan Posts: 4,154
    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
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • PissBottleManPissBottleMan Posts: 4,154
    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
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • NothingbetterNothingbetter Posts: 570
    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).
    Kansas City 6/12/03 ** Kissimmee 10/9/04 ** Atlantic City 10/1/05 ** Denver 7/2/06 ** Denver 7/3/06 ** Chicago 8/23/09 ** Chicago 8/24/09 ** Kansas City 5/3/10 ** Dallas 11/15/13 ** Oklahoma City 11/16/13 ** St. Louis 10/3/14 ** Tulsa 10/8/14 ** Chicago - Wrigley Field 8/20/16 ** Chicago - Wrigley Field 8/22/16 ** Oklahoma City 9/20/22 ** Ft. Worth 9/15/23

    EV - St. Louis 7/1/11 ** Tulsa 11/19/12
  • Best of luck PBM, hope all works out well and to see you for some PJ shows in the future.
  • DeniseCKDeniseCK Posts: 10
    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
  • 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.
    This is the best I could come up with.
  • PissBottleManPissBottleMan Posts: 4,154
    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
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • dont_go_on_medont_go_on_me Posts: 877
    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!
    "I'll do whatever the song dictates - if it doesn't need a real lead, then I won't do one. But if it does, then I'll fuckin' go off." - Mike

    "Japan is awesome; the fans there knew all the words to all the songs...at least phonetically." - Stone

    "I know this song so well, I can smoke a cigarette, have a drink, brush my teeth, take a shit, and mow the lawn while singing it. But I'll only be doing a couple of those things during this version." - EV
  • onepjgironepjgir Posts: 1
    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!
  • PissBottleManPissBottleMan Posts: 4,154
    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
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Wow Great thread!

    I'm sure many of you have seen me mention a morning lactose intolerance in some of the threads I replied to a while back. The last few months I've been thinking that its something more. I have cut back on Dairy products and tried to stick to what I consider "Safe foods" but I still have....for lack of a better word, attacks. The pain is not debilitating like the stories I have read here, but it does hurt...usually its just really bad gas and it eventually clears or its the...get yer ass to the toilet NOW pain, and it is ok when I'm finished. Usually its the latter actually. When I don't get the right sleep or whatever I wake up with a stomach ache and the whole day I'm in the painful gas bubble...case of the farts, back to the painful gas bubble cycle for most of the day. Its embarissing and painful, but such is life for me.

    I have a couple of friends with IBS and a co-worker who's had gall bladder problems. I've spoken to them at length about my situation and I definately have to get to a doctor to get a proper diagnosis. I have come to my own conclusion that I more than likely have a mild case of IBS.
    I had no idea till I started talking about it, how many people I knew who had it...and Its really awesome that you all are so open about it and supportive of each other.
    I hope that when I do get it checked out they can help me manage this so that I don't have to be really unhealthy to control this. When I travel I just don't eat cause I dunno whats going to set me off and you all know what its like on a plane or driving in the middle of nowhere...bathroom is not easily accessible. I'm used to going long periods of time without food, but I know its really unhealthy to do that so I'd love to find a way to be healthy when travelling without constant worry ya know.

    Anyways I've rambled on long enough. If you've made it this far thanks for reading.

    ohh and Russty....I'm so happy you're heading up here in the fall. I'd love to meet you at one of the shows.
    "Rock and roll is something that can't be quantified, sometimes it's not even something you hear, but FEEL!" - Bob Lefsetz
  • PissBottleManPissBottleMan Posts: 4,154
    Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

    Wish me luck.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • Alive-2005Alive-2005 Posts: 8
    Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

    Wish me luck.

    PBM


    Good Luck!!!
    the world has come undone
    like to change it everyday
    change don't come at once
    it's a wave
    building
    before it breaks
  • PJChic9PJChic9 Posts: 39
    Good luck to everyone dealing with these ailments. It sux. As for me my stomach etc etc has felt like a pile of shit most of the month. I went to a GI and he did an ultrasound and found nothing. So this Friday I am going in for an endoscopy and colonoscopy (sp?). Eek. A few other people in my family have had them, but I guess years ago they made them do it w/ out putting u out, which would suck, so apprently I wont remember anything, but still nervous. Especially for the prep. I have to drink this nasty shit on thurs, and clear liquids, which sounds worse than the procedure itself. Anyway, be thinking of me, and I know some of you have had this done, so if you have any suggestions lemme know...eekk..im scared...thanks:)
    Dee Dee aka Beavis =)

    "He's Alive but feels absolutely nothing, so is he?? I'm still Alive."

    "Oh, I'll keep taking punches until their will grows tired.
    Yeah, I won't change direction and I won't change my mind... How much difference does it make? ...
  • PissBottleManPissBottleMan Posts: 4,154
    PJChic9 wrote:
    I have to drink this nasty shit on thurs

    For my last two colonoscopy's I've taken the pills instead of drinking the liquid. It is so much better....if you take pills alright. You have to take like 20 pills over the course of 2 hours.

    As for the procedure itself...it's nothing to worry about. They give you good drugs and you get the day off of work.

    Just make sure they do the endoscopy first...you don't want them to put that camera down your throat after your colonoscopy.

    :D

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • KAOS70KAOS70 Posts: 20
    Hey guys, I am going in for my first batch of Remicade this morning. I'll report back later on today.

    Wish me luck.

    PBM

    Let me know how that works for you. I just found out today that I have to go in for another colonoscopy :eek:, second one in 6 months. Meds aren't helping. Doc said he wants to go back in for another look before he keeps giving me more meds. He mentioned that if it was something meds aren't going to help about possible surgery. No good choices here, either go on Prednazone to temporarily get over the hump, but the doctor said eventually we would have came to the point of doing another colonoscopy. God! Can't wait to drink that yummy phospho-soda :p This is a sucky thing so I have to make some sort of an attempt at a joke! It is NOT fun!

    Good luck with the Remicade!
  • PJChic9PJChic9 Posts: 39
    lol ew wi never thought about it that way......hopefully they will put it down my throat first..:)

    ya i wish i had those pills that shit SUCKED. More than anything that has ever SUCKED before. The first dose was horriblle, then w/in 5 min a threw up, then the fun began, and then against my wishes i had to take the second dose, after 3 sips threw up, then finshed it and then more fun, on my way to the outpatient place. yay... thanks guys....later:)
    Dee Dee aka Beavis =)

    "He's Alive but feels absolutely nothing, so is he?? I'm still Alive."

    "Oh, I'll keep taking punches until their will grows tired.
    Yeah, I won't change direction and I won't change my mind... How much difference does it make? ...
  • PissBottleManPissBottleMan Posts: 4,154
    KAOS70,

    So far, I haven't noticed a change. However, I've heard it can take a while.


    PJChic9,

    I feel for you. I mixed that Fleet stuff with 7-up for my first colonoscopy and I've never looked at 7-up the same way.

    Good luck to everyone.

    PBM
    "We paced ourselves and we didn't rush through it and we tried to be as creative as our collective minds would let us be over some course of time instead of just trying to rush through a record"

    Wishlist Foundation: http://wishlistfoundation.org
  • PJChic9PJChic9 Posts: 39
    Thanks pbm. Ya it said to mix w/ water so I did, it was so gross, plus it wa slike lemon flavor or something, so like after the frist dose after i downed a bunch of water, i wanted some sprite, and then i wa slike eww lemon, so i dunno if ill be drinking that for a while, oh ya and i love lemon lime gatorade and i couldnt dirnk that yesterday either, ...that shit was so damn gross..omg.

    Today went well. Everyone at this place was real nice, commenting on my tatoos and what not right before they put me out, lol... but ya i was gone, didnt feel a thing, just what i wanted, lol... but ya they found nothing, took a biopsy thats it, so im gonna get treated for ibs, fun fun..Guess it could be worse.. Later dudes!:)
    Dee Dee aka Beavis =)

    "He's Alive but feels absolutely nothing, so is he?? I'm still Alive."

    "Oh, I'll keep taking punches until their will grows tired.
    Yeah, I won't change direction and I won't change my mind... How much difference does it make? ...
  • PJfanFORlifePJfanFORlife Posts: 138
    I just got my dose of remicade. And like usual I start feeling better that week. I am so siked cause I wasn't feeling well there for a minute, but now am feeling a little better. I have been on remicade since 9/02. It made a huge difference at first but not so much now. It is keeping me somewhat stable, but I am still having problems. I don't stress over it. i go on vacation next week. I am so excited. My wife and I need a break. We are going to the Smokey Mountain National Park in Tennessee. It is so beautiful there. Only one problem VERY FEW RESTROOMS. So when we are hiking I have to carry a small shovel, biodegradable wipes, and a backpack. You know just in case.

    Take Care!!
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
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