Crohn's Disease

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  • Buck Hunter & Just a Fan,

    Thank you for sharing your stories. Next month will be 6 year with this disease for me. Just got my latest batch of Remicade last week. Takes a few weeks to kick in, but I can feel a difference.

    Good luck to both of you.

    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
  • Heatherj43Heatherj43 Posts: 1,254
    I don't know if its been mentioned here, but I was talking to someone in Arkansas last night and they said...you know that guitarist from PJ...well he does this commercial on this radio station here about him having Crohns and things he has been through. I hadn't heard anyone here mention this commercial or PSA.
    She said she heard it on rap station.
    Save room for dessert!
  • "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
  • KrohnKrohn Posts: 79

    Thanks for the link PBM. I really hope CCFC can get this type of support in the future. I wonder if those ad's are restricted to CCFA / USA radio / TV stations? Thats an awsome way to raise awareness.

    Krohn
    www.wishlistfoundation.com
    www.ccfc.ca
    www.ccfa.org
  • Post #9,999

    When I first started coming to this board back in 2002, not too many people talked openly about Crohn's Disease. Then, in March of 2003, Mike McCready announced he has the disease. I still remember the sigh of relief I had because I wasn't alone (a little dramatic, but it's true).

    Since then, I've been able to find comfort and support from different board members.

    We all raised over $15,000 for the CCFC in Canada last fall.

    We can make a difference.

    Thank you to all the Message Pit members who have opened their hearts, minds & wallets (:)) to a great cause.

    Thank you Mike McCready for having the courage to speak up about this disease.

    "...one day, the symptoms fade, think I'll throw these pills away"

    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
  • Post #9,999

    When I first started coming to this board back in 2002, not too many people talked openly about Crohn's Disease. Then, in March of 2003, Mike McCready announced he has the disease. I still remember the sigh of relief I had because I wasn't alone (a little dramatic, but it's true).

    Since then, I've been able to find comfort and support from different board members.

    We all raised over $15,000 for the CCFC in Canada last fall.

    We can make a difference.

    Thank you to all the Message Pit members who have opened their hearts, minds & wallets (:)) to a great cause.

    Thank you Mike McCready for having the courage to speak up about this disease.

    "...one day, the symptoms fade, think I'll throw these pills away"

    PBM

    Hopefully we can double or quadruple what was raised in Canada. Well said, PBM! I'm glad you can have a place to talk openly about the disease.
    No longer overwhelmed it seems so simple now.
  • I was talking to one of our sales-ladies at work today. She said her roomate has a severe case of Crohn's Disease. She has a hard time getting out of bed and going to work because of the stomach pains and the depression.

    I can't remember if we've touched on it in this thread, but it is very relevant.

    My mood swings from high to low a lot because of my energy level.

    Does anyone else seem to have this problem?

    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
  • I was talking to one of our sales-ladies at work today. She said her roomate has a severe case of Crohn's Disease. She has a hard time getting out of bed and going to work because of the stomach pains and the depression.

    I can't remember if we've touched on it in this thread, but it is very relevant.

    My mood swings from high to low a lot because of my energy level.

    Does anyone else seem to have this problem?

    PBM

    I don't have Crohn's but I've got IBS and when I have a bad day, I get kinda depressed and have pretty bad mood swings.

    Although, I found that by cutting caffiene completely out of my diet helps a LOT, but still have the bad days, just less of them.
    Underneath this smile lies everything
    all my hopes, anger, pride and shame...
  • KrohnKrohn Posts: 79
    I was talking to one of our sales-ladies at work today. She said her roomate has a severe case of Crohn's Disease. She has a hard time getting out of bed and going to work because of the stomach pains and the depression.

    I can't remember if we've touched on it in this thread, but it is very relevant.

    My mood swings from high to low a lot because of my energy level.

    Does anyone else seem to have this problem?

    PBM

    Hey PBM,

    I've had trouble with the mood swings as well. I know part of it was because of the steroids I was pumped full of. The mood swings have become less frequent since my operation, but I still get them. When I was really sick, I had the exact same problem as your co-workers roommate. I could not get myself out of bed in the morning for school and / or work. I would just blow my top for no reason, or just get so depressed I'd be brought to tears.

    Up until i had my colonectomy, I was a very positive person. I was always that 'I can win this. I can get better. I wont let this beat me' type of person. Within weeks of the surgery, I realized I was in denial for years, and everything felt like it was crashing down on me. I lost my faith, I lost friends, I lost another year of school. From being a very positive person, I went to being angry, resentfull, depressed and pissed at the world. I won't drag this into another novel-of-a-post. Bottom line, yes, it happens to me. From what my doctor told me, the mood swings with Crohn's Disease or IBS are normal. It's been 7 years since that surgery, and I feel better emotionally now-a-days then I have in a long long time. Keep fighting. Things get better, I promise! Hope this helps!

    Krohn
    www.wishlistfoundation.com
    www.ccfc.ca
    www.ccfa.org
  • I was talking to one of our sales-ladies at work today. She said her roomate has a severe case of Crohn's Disease. She has a hard time getting out of bed and going to work because of the stomach pains and the depression.

    I can't remember if we've touched on it in this thread, but it is very relevant.

    My mood swings from high to low a lot because of my energy level.

    Does anyone else seem to have this problem?

    PBM
    yes mood swings like a champ. like this past week I was sick 3 outta the 5 work days. Not only was I sick but I get very depressed. it isn't as bad as it use to be. When I was on steroids it was bad.

    PBM, the energy level is tough to maintain. i eat a lot of protein and i get a B-12 shot monthly and i still have low energy frequently. I've learned to eat 3 bananas a day due to the protein they provide. Plus meat(chx, fish, beef) Exercise goes a long way as well. the problem is if you have low energy it is VERY hard to start a regular exercise program. But once I started exercising and got into a routine my energy level increased. Hopefully it will work out for you. It's best to try diferent options and find what's best for you. Keep us posted
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
  • I think my Remicade is kicking in right now because I have lots of energy...I can't sit still. I'm sure it will wear off in a few weeks, but for now...I'll enjoy it.

    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
  • stylo17stylo17 Posts: 1,001
    I think my Remicade is kicking in right now because I have lots of energy...I can't sit still. I'm sure it will wear off in a few weeks, but for now...I'll enjoy it.

    PBM


    enjoy it while it lasts. just dont too excited or u might not b able to sleep
    6/11/08 WPB


    ♬♪♫ and I will not, grow tired of crayon stars and fire

    ♬♪♫ cause a soldier's death is so much better than defeat just hanging around
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    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
  • KrohnKrohn Posts: 79
    Check out this story on digg.com... be sure to digg it so diggnation talks about the story on their pod cast so the sotry gets even more exposure....

    http://digg.com/science/Crohn_s_disease_enigma_close_to_solved_


    I grabbed this link from MasterModeler in a thread that was started on The Porch. This news makes me happy, and thought I would drop it into this thread. Thanks again MasterModeler!!

    Krohn
    www.wishlistfoundation.com
    www.ccfc.ca
    www.ccfa.org
  • Thank you! you guys in here! especially the ones with crohns or ibs, can´t even imagine what you´re going through.
    My brothers girlfriend Hannah (since nearly 15 yrs) has Crohns. I have never heard her complain during the somewhat ten years I´ve known of her illness, she´s been hospitalized on numerous occations, like i guess a lot of you guys and girls have too, but never , ever a negative attidude! Even though she, and numerous others are being tormented by this horrible disease you never seem to give up!

    "wishing I could actually DO something about it"

    Sincerely, Joachim

    PS Here in Sweden Crohns is still extremely unheard of..
    Stockholm 1992-06-25
    Stockholm 2000-06-28
    Boston 2004-09-28
    Arnhem 2006-08-29
    Berlin 2006-09-23
    Copenhagen 2007-06-26
    Dublin 2010-06-22
    Berlin 2010-06-30
    Copenhagen 2012-07-10
    Stockholm 2012-07-07
    Stockholm 2014-06-28
  • PissBottleManPissBottleMan Posts: 4,154
    After seeking out a bathroom at the world famous Ryman Auditorium on Saturday, I have decided to write two books concurrently.

    One will focus on all the famous places I've gone to the bathroom.

    The second will be a book on the best places to go to the bathroom in famous cities.

    I'm shopping around my idea to publishers...no takers just yet.

    :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
  • KrohnKrohn Posts: 79
    After seeking out a bathroom at the world famous Ryman Auditorium on Saturday, I have decided to write two books concurrently.

    One will focus on all the famous places I've gone to the bathroom.

    The second will be a book on the best places to go to the bathroom in famous cities.

    I'm shopping around my idea to publishers...no takers just yet.

    :D

    PBM

    BRILLIANT!
    www.wishlistfoundation.com
    www.ccfc.ca
    www.ccfa.org
  • wilfmisswilfmiss Posts: 196
    After seeking out a bathroom at the world famous Ryman Auditorium on Saturday, I have decided to write two books concurrently.

    One will focus on all the famous places I've gone to the bathroom.

    The second will be a book on the best places to go to the bathroom in famous cities.

    I'm shopping around my idea to publishers...no takers just yet.

    :D

    PBM

    Might I suggest NOT using the bathroom from Trainspotting?
    3-29-94-FL/9-24-96-MD/9-18-98-MD/9-05-00-PA/4-26-03-PA/5-03-03-PA/7-12-03-PA/10-1-04-PA/9-19-05-ON/9-28-05-PA/5-09-06-ON/5-10-06-ON/6-23-06-PA/6-19-08-NJ/10-28-09-PA/5-20-10-NY/5-21-10-NY/9-11-11-ON/9-12-11-ON/9-2-12-PA/9-22-12-GA/10-11-13-PA/10-18-13-NY/10-19-13-NY/10-16-14-MI/9-26-15-NY/4-9-16-FL/4-11-16-FL/8-8-18-WA/8-10-18-WA
  • Just wanted to give an update....I am having colostomy surgery at the end of the month. I have a severe stricture in my rectum that is causing fistulas among other problems. I was just in the hospital where they were able to dilate the stricture to give me some temporary relief. This way I can eat and gain some weight before I go under the knife. The surgery will remove my rectum.
    I am very nervous, but I do have a positive outlook. Once I get through the recovery my health will improve. i will be able to travel and do things I couldn't before. I won't have to worry about going to the bathroom. my first surgery was a bowel resection where they took out 2½ feet of intestine. That recovery was tough and that was 7 years ago. This will be tough but I am keeping my head held high. What doesn't killl us only makes us stronger.

    On another note. The doc had tried to increase my remicade and that made me very ill. Warning to others, be careful of infections if you are on this drug.
    Good luck to all of you who are fighting this battle. i love you all....
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
  • PissBottleManPissBottleMan Posts: 4,154
    Thank you for the update...you're in our thoughts.

    You might want to send a messge to Krohn...I think he has a better understanding about the colostomy surgery. He answered a lot of our questions.

    Cheers to you...call on us if you need anything.

    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
  • rktscirktsci Posts: 19
    This is the first I've seen this thread, but it looks like it's been going awhile. I haven't been through all of it, so pardon me if I'm repeating or asking a previously answered question.

    I've had IBS for about 4 years now on and off, mostly on. I was fortunate to have tested negative for Crohn's. My thoughts are too all those that do have Crohn's. Many times I have had to excuse myself from a social situation hoping to either get home or to an "acceptable" bathroom in a hurry. More embarrassing perhaps is the gas. Hiding that sometimes isn't so successful. Right now I'm taking Elavil once a day which keeps the abdominal pains under control thankfully. I do have a couple of questions though.

    1) Is anyone here familiar with the acne drug Accutane? It was almost immediately after taking this for a four month treatment that my problems began. I later found out my doctor had me on too high a dosage for my body weight, and that intestinal damage was a known side effect of Accutane. Anyone else aware of this connection and have anymore information on it? I know there is a class action suit against Accutane for Crohn's, but I guess IBS didn't qualify.

    2) Does anyone else have more trouble with Crohn's/IBS on airplanes? This is where I suffer the most now it seems. My guess is it's due to the pressure changes when at high altitudes. Anyone know of a good way to control this on a flight?

    Always good to hear from others going through similar experiences. Hope all is going well with your current treatments.
  • PissBottleManPissBottleMan Posts: 4,154
    I am not familar with Accutane, but I will look into it.

    Yes, when we went to Jamaica to get married I had problems on the plane. I took some Immodium to help with bathroom visits, but I still had discomfort.

    I've given up on the phrase "Acceptable Bathroom"...:D

    You should see some of the dumps I've been to...when you have to go, you have to go.

    Glad you came inside the thread...continue to ask questions...that's what we're here for.

    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
  • rktscirktsci Posts: 19
    Immodium has worked for me some too on flights in keeping the bathroom trips down, but damn do those pains ever suck sometimes. That's also when the gas sets in for me. Real hard to hide that on a plane. :) Lucky for me the longest flight I've ever taken so far was to Paris before I had IBS.

    Are you a camping person at all? I'm pretty reluctant to take immodium consistently, so I avoid going camping with friends even for a weekend. Any suggestions there? I don't look forward to having to run off behind a tree. Although that would probably be better than some of the bathrooms out there. :)
  • PissBottleManPissBottleMan Posts: 4,154
    rktsci wrote:
    I
    Are you a camping person at all? I'm pretty reluctant to take immodium consistently, so I avoid going camping with friends even for a weekend. Any suggestions there? I don't look forward to having to run off behind a tree. Although that would probably be better than some of the bathrooms out there. :)

    I'm not...as a matter of fact, I pick and choose my events wisely. I don't drink that much because I'm afraid of flaring up too.

    Usually, if I'm going to a big event (like a show), I refrain from eatting a whole lot of food. It's an extreme, but it works for me.

    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
  • rktscirktsci Posts: 19
    I'm not...as a matter of fact, I pick and choose my events wisely. I don't drink that much because I'm afraid of flaring up too.

    Usually, if I'm going to a big event (like a show), I refrain from eatting a whole lot of food. It's an extreme, but it works for me.

    PBM

    I do the same before big events, espesically concerts where I figure I'll be jumping around.
  • PissBottleManPissBottleMan Posts: 4,154
    Did you see my video about Crohn's set to Down?

    http://video.google.com/videoplay?docid=2146889209683925149&q=Mike+McCready

    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
  • rktscirktsci Posts: 19
    Very Cool PBM!!!
  • So today I found out my insurance won't cover the ostomy products i will have to use after i have my surgey. i just wanna cry. I don't make any money, this surgery is gonna kick my ass financially. my wife is stressed out. i am just happy that my work isn't gonna fire me. I don't get paid for the Medical leave but they are trying to apporve me working from home.
    I guess I will try to apply for medicare for the ostomy products. Having a disease sucks!!!!!
    Guess I'll trn on music instead...

    ccfa.org

    http://organicconsumers.com/
  • PissBottleManPissBottleMan Posts: 4,154
    So today I found out my insurance won't cover the ostomy products i will have to use after i have my surgey. i just wanna cry. I don't make any money, this surgery is gonna kick my ass financially. my wife is stressed out. i am just happy that my work isn't gonna fire me. I don't get paid for the Medical leave but they are trying to apporve me working from home.
    I guess I will try to apply for medicare for the ostomy products. Having a disease sucks!!!!!

    Check around for help...I'm sorry I don't have much to offer for advice.

    Email or call the CCFA and see if they can help point you in the right direction.

    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
  • KrohnKrohn Posts: 79
    So today I found out my insurance won't cover the ostomy products i will have to use after i have my surgey. i just wanna cry. I don't make any money, this surgery is gonna kick my ass financially. my wife is stressed out. i am just happy that my work isn't gonna fire me. I don't get paid for the Medical leave but they are trying to apporve me working from home.
    I guess I will try to apply for medicare for the ostomy products. Having a disease sucks!!!!!

    I'm so sorry to hear that PJfan. I wish I could offer some help in regards to your supplies. It's robbery I tell ya. Need this stuff to live, and the costs are outragous. I'm in Canada, so there is a program in place to help. The government provides two installments a year. I don't know if it's income based or a flat rate though. I have no knowledge of the american system...I really hope there is something, someone can do for you. Send me a PM if you want to chat.

    Krohn
    www.wishlistfoundation.com
    www.ccfc.ca
    www.ccfa.org
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