I just found out my second colonoscopy is going to be this coming Tuesday, which means I can't eat on Memorial Day! But I'll get to have that Phospho-Soda that we all love SO much! :eek: -Ew! Just thinking about having to drink that makes me sick!
I'm a little nervous I guess of what he'll come to for a conclusion. As as yet, no meds are responding & the doctor said he wanted to do this before he puts me on something as powerful as Remicade, that's a scary thought too as my immune system is low already. No good alternatives here.
PBM, I hope the Remicade does start working soon & PJfanFORlife, enjoy that vacation!
Good luck to you all!
good luck that sux, that stuff is so damn nasty, eww...happy memorial day..geez..
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? ...
I just want to say it's great to see so many people so open and supporting of each other here, I have IBS myself and I know a couple of people with Crohn's and both illnesses are horrible - in a weird way though it kind of helps to hear about other people going through the same things...good luck to you all! )
I think it's great there are drugs that can help with this now. About 27 years ago, I suffered from Ulcerative Colitis and there were only two drugs to help--azulfadine and prednisone. Reading some of your experiences with testing (been there) and the nasty stuff you have to drink (that too) brings back some very painful memories. Happy to say it's all behind me now (no pun intended) as I had an ileostomy 25 years ago.
Be brave, young people! I'm so glad Mike has had a part in making more people aware of these two diseases. Back when I was a sufferer, this kind of thing was simply not discussed. Even to tell the doctor that I was incontinent was very difficult. Oh if only I had the line "I shit and I stink" at that time, how much easier it would have been. I still think it was amazing and incredibly brave of Mike to stand on that stage at the CCFA benefit in April and tell everyone that he shits his pants! Wow. And to think I had a hard time telling my DOCTOR that I had bloody diarrhea!
I wish you all better days ahead...healthier times and no pain. And remember that if the time ever comes when you have to have your intestines removed (with either a colostomy or ileostomy) it won't be the end of the world. You'll still be able to do everything you used to do, and one thing with a little modification!
It's not the world that's heavy, it's just the things that you save...
Well, my colonoscopy that I had after memorial day went horribly wrong. They were supposed to use anesthesia this time because the last time I had it done (6 months ago) I came awake during the procedure in pain. Well, this time they really screwed up & didn't put down on my paperwork that I needed anesthesia, SO-the doctor said "Don't worry, we'll knock you out cold", so they gave me versed, phenergan & fentanyl, which did knock me out cold. But again, I came awake screaming in pain during the procedure, I have never felt pain like that. They said I should never have came awake w/ that much meds in me, but I sure as hell did & remember it well. They found a bunch of ulcers throughout my intestines, ileum, small bowel & colon. What fun! :(
So, I go for my first Remicade infusion on Wednesday. I am a little nervous because I don't really know what to expect & it's on the oncology floor (my Mom died of cancer) so I'm a little nervous about just being on that floor (a lot!) Wish me luck!
PBM: Did the Remicade start working any wonders for you yet? I'm worried of it lowering my immunity system. I have already lost so much weight.
Wish me luck!
So, I go for my first Remicade infusion on Wednesday. I am a little nervous because I don't really know what to expect & it's on the oncology floor (my Mom died of cancer) so I'm a little nervous about just being on that floor (a lot!) Wish me luck!
PBM: Did the Remicade start working any wonders for you yet? I'm worried of it lowering my immunity system. I have already lost so much weight.
Wish me luck!
Man, I hate to hear about all of your misfortune. It's been three weeks now for me, but I haven't noticed a lot of difference. However, my crohn's isn't as bad as some.
I have some depression problems to work on too. Having a chronic illness can really wear on you, so I am trying to deal with that.
Good luck to you and let us know how your Remicade goes.
Cheers to all,
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"
"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"
I know you posted a while ago, but I don't have much time to check the boards often. My roommate has Crohn's and although I do not have it, I know what you're going through. She has one of the most severe cases ever documented. She is going to be 26 on Wednesday, and she was diagnosed at 15. In the time that I've known her she has had 4 surgeries and 6 overall-- 3 of them major. She's had all of her intestines removed except for what she has to have to survive. She has been on so many medications over the years that her body has grown immune to most of them-- the poor girl lives in pain every day. She's getting married in November (to my other roommate) and it's looking doubtful for her to have kids. I'm not telling you all of this to try and scare you-- like I said, her case is extremely severe.
I'm sorry you are going through this b/c I have seen what it can do to a person. I'll keep you in my prayers and I hope the medications work for you. Hang in there!
"It only hurts when I breathe"~ Greenwheel
"Love is a tower of strength to me"
"I wait up in the dark, for you to speak to me"
"I'll ride the wave where it takes me"
"I did what I had to do, if there was a reason, it was you"
"I hold the hand that holds me down... I will RISE ABOVE!"
"Shit, solo or something"~ Eddie Vedder
"The best way to change something that's around you, something you don't like, is to change yourself. And I don't think you want other people changing you, I think the only person that can change you is yourself. So if you ain't happy, if you're reading magazines about generation x-ers and thinking 'yeah, I'm one of them', well fuck that. Don't let anyone tell you who you are. No, no. No one can tell me who I am."~ Eddie Vedder (9/26/96)
Last fall my upset stomach/stomach pains/diarreah finally became unbearable. For the longest time, I just ignored it (not talking about medical problems runs in the family... the doctors asked "Why didn't you say something sooner?"... like they couldn't comprehend this might be something difficult to talk about). One of my worst bouts with it was, ironically enough, at the Reading VFC show. I was nearly doubled over for half the show (it was still one of the best I'd ever seen though!). I needed a bathroom but there was no WAY I was missing any of that show. I ran to the car thinking we could beat the crowd out of the parking garage and I could at least have the comfort of a private bathroom to get through it... bad choice. I ended up spending half the night on the toilet with a garbage can in front of me, stuff flowing out front and back (bleh!).
I started thinking about my symptoms and Crohn's, which I never would have heard of had it not been for Mike stepping up to the plate and raising awareness. I realized if someone like him can tell the whole world about his problem and not be embarrassed, I could at least go to a doctor. With the help of my wife, I gave in and finally went. Although I was initially diagnosed with an ulcer, they eventually figured out it was IBS. I was put on Librax (with clindinium) and have been feeling better.
What I've gone through is no where near as tough as those with full blown Crohns... I admire your strength and determination. Do your best to control it, don't let it control you.
I'm not telling you all of this to try and scare you-- like I said, her case is extremely severe.
Not too much scares me anymore. I hate to hear of your roomates misfortune. I had a really bad period with my Crohn's. Shortly after I was diagnosed, I got an abcess on my liver and 1/4 of my colon removed. I have a nice "zipper" scar down my belly that PissBottleWoman likes to show off to people whenever she gets the chance.
lovebuzz,
Man, I know the feeling. Last year, at St. Louis VFC I had to down a couple Immodium pills before I went to the show. While I was at the pre-show, folks were drinking beers and eating food, but I had to abstain. Don't get me wrong, I drink a little for special occassions, but I didn't want to mess up my Pearl Jam show. The last thing I wanted to do was hear Save You from the inside of a stall at the Fox Theatre.
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"
Man, I hate to hear about all of your misfortune. It's been three weeks now for me, but I haven't noticed a lot of difference. However, my crohn's isn't as bad as some.
I have some depression problems to work on too. Having a chronic illness can really wear on you, so I am trying to deal with that.
Good luck to you and let us know how your Remicade goes.
Cheers to all,
PBM
I am so glad you mentioned the depression, I've been going through that also. It is a lot to deal with. It's so nice to relate to others about this (as sucky as Crohn's is!) Good luck to everyone fighting this!!!
I am so glad you mentioned the depression, I've been going through that also.
The best way to help beat that is by talking to others. Coming to this board helps a lot. Just getting my mind off of my problems is great. Talking to others who understand is equally as great.
If you have any problems, ask I'm an ear.
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"
hey i take librax too... as well as zantac... and now that ive been to a specialist he gave me rubinol for if i have a lot of pain, which works, but i was wondering about the nausea? Certain days im just so sick to ym stomach adn all i wanan do is puke, im liek wtf, is there anything I can take for that? I guess I'll have to ask him, cause i try crackers and ginger ale, and rolaids use dot help but not anymore, ugh....
KAOS That sux so much, im sorry that happened to you. I would freak out if i woke up in the middle of that shit what the hell... Whats theyre deal??? I wouldnt go back to those people to get that done, omg, its not hard to set up anesthesia, that sux....:(...good luck
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? ...
hey i take librax too... as well as zantac... and now that ive been to a specialist he gave me rubinol for if i have a lot of pain, which works, but i was wondering about the nausea? Certain days im just so sick to ym stomach adn all i wanan do is puke, im liek wtf, is there anything I can take for that? I guess I'll have to ask him, cause i try crackers and ginger ale, and rolaids use dot help but not anymore, ugh....
KAOS That sux so much, im sorry that happened to you. I would freak out if i woke up in the middle of that shit what the hell... Whats theyre deal??? I wouldnt go back to those people to get that done, omg, its not hard to set up anesthesia, that sux....:(...good luck
PJChic9...you may want to try a little ganja here and there or maybe try nexium over zantac..I know I use to have problems with nausea....
KAOS I use to wake up in the middle of colonoscopies but now I have a doc who completely puts you under for the procedure. So now the worst part is the prep...
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
I hope that everything goes well for you.Just keep thinking of Canada.
when you get confused just listen to the music play........
"You damn well can't lick the system,but you can sure give it a good fondeling."-sleazy estate man(Hugh Laurie on A bit of Fry and Laurie)
"Judas Priest on a two stroke moped!"(Stephen Fry)
I hope that everything goes well for you.Just keep thinking of Canada.
Thanks for bumping this up....actually, I am doing really well.
I have changed up a few medications and now I am doing good.
Remicade and my B-12 shot seem to be working. We're working on a fundraiser for the Canadian tour, so be on the lookout. The CCFC has been very supportive of the idea.
See you soon in London and Kitchener.
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"
Well, it's that time again, time for another Remicade treatment! At least I know what to expect since this will be my second time. Still, doesn't make it anymore pleasant. But I have to live with it, so what can I do? I'll just have to look forward to getting free dinner from the cafeteria (ha ha....)
Anyway, haven't noticed much of a change yet, they (the gastro doc & the nurse) tell me after the second treatment you may feel some changes. And the depression that is going along w/ it, I don't know. I don't really want to go the doctor about it because I feel I am already on enough meds. I think I can handle the depression part of things, I know what to look for & thank god I have some good friends!
I'll be tired but I can listen to some PJ on the way home to help keep me awake long enough for the ride home-I get so tired! And then, I am so excited that Pink Floyd is reuniting for the Live 8 show! So, I have to focus on the good stuff!!! The Remicade treatment will suck, but hey, free cookies! (Gotta have a sense of humor, & when you walk in a hospital & see a woman getting an infusion for Crohn's & eating chocolate chip cookies, well, that's gotta be funny as hell to see!!!)
Good luck to you guys all fighting this thing too!!!
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.
ACCBootleggoddess I sure hope you went and got checked out. No one needs to be in pain! {{{ACC}}} I would love to see you in CAnada! I'll be at the Vancouver show no matter what! Its been a shitty couple of months. My kidneys stopped working and I've been having really bad flare ups. :( But I told the doctor last week that no matter what they have to drug me up enough to get me to Canada! LOL I'm changing my diet as well again, as it now seems that there are things that have become a problem that weren't issues before. But as long as I have my music, I'll be happy. Chiquimonkey and I will be together with others at Vancouver. We should have a kick arse fun group. I'd love it if you could join us.
I go in for my second treatment in about 3 1/2 weeks (July 18). I'm not as tired as I used to be and my energy is coming back. I think this stuff is really working out after all. We're sending good thoughts along your way.
MASSDISSIDENT,
Thanks for the positive thoughts and thanks for the support. We're working to get the word out about Crohn's and hopefully, find a cure.
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"
Thought I would post this in this thread in case you missed it:
Would you please take just a minute to address your personal struggle with Crohn's disease, the strides that are being made in finding a cure and what each of us can do to help? Thanks for all you do. — Matt Thompson, Oklahoma City
I have had Crohn's for about 19 years. It is a debilitating disease that affects my colon. I have lived most my life with chronic inflammation and constant pain with immediate diarrhea. Due to the symptoms, it's one of those topics that doesn't make the "dinner conversation" list and that a lot of people feel embarrassed to talk about. I started talking publicly about it because I didn't want people to have to suffer silently — it's disempowering.
More than two million men, women and children suffer from Crohn's disease and/or Ulcerative colitis. I am currently on the Specific Carbohydrate Diet along with medications such and Imuran and Colazal. The diet, I believe, is the only thing that has worked for me, though. People like you can help by contacting the Crohn's and Colitis Foundation of America and finding out more about these diseases, or by donating money for research at http://www.ccfa.org. The CCFA helped me figure out that I was not alone with my disease anymore. Every time I make a new IBD connection I feel hopeful!
I go back for treatment #2 of Remicade on Monday. Cross your fingers.
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"
Thought I would post this in this thread in case you missed it:
Would you please take just a minute to address your personal struggle with Crohn's disease, the strides that are being made in finding a cure and what each of us can do to help? Thanks for all you do. — Matt Thompson, Oklahoma City
I have had Crohn's for about 19 years. It is a debilitating disease that affects my colon. I have lived most my life with chronic inflammation and constant pain with immediate diarrhea. Due to the symptoms, it's one of those topics that doesn't make the "dinner conversation" list and that a lot of people feel embarrassed to talk about. I started talking publicly about it because I didn't want people to have to suffer silently — it's disempowering.
More than two million men, women and children suffer from Crohn's disease and/or Ulcerative colitis. I am currently on the Specific Carbohydrate Diet along with medications such and Imuran and Colazal. The diet, I believe, is the only thing that has worked for me, though. People like you can help by contacting the Crohn's and Colitis Foundation of America and finding out more about these diseases, or by donating money for research at http://www.ccfa.org. The CCFA helped me figure out that I was not alone with my disease anymore. Every time I make a new IBD connection I feel hopeful!
I go back for treatment #2 of Remicade on Monday. Cross your fingers.
PBM
Hey!
I wanted to see how you are feeling now. Has the Remicade been effective for you? I just finished my third infusion this week & it has not helped me at all. In fact I'm in pain every day. The doctor sent me for a CT scan Thursday which went poorly, it's amazing that something as simple as a CT scan can go poorly but it did. I had to drink 4 glasses of that awful contrast, & then have it injected in me for the scan itself (that hurts like hell when they first shoot it into your veins). It took 7 stabs w/ the needle before they got the IV in. I feel like a human pin cushion! But I can handle it. What I do not like is the not knowing why the doctor cannot figure me out! He said I was difficult (ha ha, I could've told him that!!!) But he meant it is strange that the Remicade hasn't healed the ulcers yet & I am still feeling so poorly if not worse. If he can't figure out anything from the CT scan he is thinking of sending me to Boston. It is just discouraging. And it really brings me down. I like that I can post in here about it, I don't like to go on about it at work, because I don't want to sound like I'm whining, but fact is, I hurt & I'm tired of it. And I just picked up a part time job to supplement my regular full time job, hope I handle it all okay. I haven't discussed the second job w/ my doctor yet, I was afraid he might say it's a bad idea! Stubborn as I am, I will mention it to him next week when I see him.
PBM, I hope that the Remicade is working for you & am interested to know if it is! Good luck to everyone else battling this!!!
the 2 are actually different although the syptoms may seem comparable. IBS is a disorder fo anxiety. It is like an anxiety attack of the gut and best treated with what we call anticholinergic medications which slow the gut down. Crohn's is an actual inflammation of the intestine, best treated with medications that are anti inflammatory. Diet is extremely important. (yes i am a doctor)
as aphysician I can not recommend marijuana although for starters try compazine suppositories and then if that does not work ask your physician how you can get marijuana prescribed legally.
Please keep posting in this thread...that's what it's here for. My second treatment of Remicade went well and I am feeling really good. It's the first time in a while that I've felt good physically and mentally.
I've cut back on soft drinks quite a bit. I am drinking more water. Now, if I can start eating a better diet, then I'll be on the right track.
Please keep me posted on your progress. Since we don't have a Crohn's support group in this area, I go to this site quite a bit:
You are not alone. I've had bad days...many of them, but there is a light at the end of the tunnel.
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"
ssdr18, suppositories for nausea??? eek!!!... so like, im just gonna go to the doc and be like listen im all nauseated and not prego so gimme some weed, damn, i wish thatd work... oh well, my tummy has actually been pretty good lately, but stress is a big factor, like if something upsets me, my tummy starts twisting and hurting, and etc etc ugh... it suxass, cause im like no dude calm down, but it doesnt help......even though i know i need to chill out, like, my body wont, or something, i kinda have anxiety too, so that doesnt help, i think i need some xanax or something for when im all flippin out and shit, cause, i cant seem to calm my ass down once i get upset, works for the rest of my fam...oh well, what ya gonna do, good luck everyone, i wish u the best!! and i feel for ya.
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? ...
but stress is a big factor, like if something upsets me, my tummy starts twisting and hurting, and etc etc ugh...
Yeah, I have to go out in the field and shoot footage for a lot of commercials. Sometimes I get stressed about it. The first thing I do is stake out the bathrooms.
It's really wierd...one minute I'm fine and the next minute my stomach is going crazy.
By the way, even though the Ten Club contest is over, I've finally gained enough energy to pu together a video about Crohn's set to Pearl Jam music.
I am almost done, so hopefully, I will figure out a way for everyone to see it.
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"
I posted earlier on this thread about my battle with Crohn's and I want to keep this thread up at the front so i am doing my part.
Thought i'd update you all on my progress
I've been living with Crohn's disease for about 5 years now.
for awhile i lived by the whole pentasa and denying my health and not eating the right foods. Now people who say this disease does not take a mental strain on you is lying. It mentally drains you.
February of this year I made a bold decision let me try taking care of this my own way and not listen to the doctor's who want me pill popping until the day I die. I decided to go off of the pentasa and increase my vitamin intake. I also altered my diet and gave up alcohol, meat, fast food, chocolate, caffiene basically all the bad stuff.
Let me tell you I recommend this to anyone because it works! I haven't felt this good in about 10 years and i don't have the "bathroom" worry anymore when i am out.
I do love the foods and all that but i made the decision that I could not justify putting my health ahead of food.
I had what my doctor called a level 4 out of 5 on the crohn's flare up where my intestine burst and I had part of my colon and a foot and a half of my intestine taken out.
Everyone that has this disease please keep fighting it. It makes life tough that is true but whatever does not kill you makes you stronger and it actually makes you truly realize what is important to you.
PBM I hope all is well.......
I cannot wait until the Toronto show for PJ....the jam have pulled me through tough times and they are the most "real" band out there.
Thanks for reading and take care all of you.
she lies and says she's in love with him.....can't find a better man!
Thanks for your progress report. I actually just got back from my Gastro. appointment. I am feeling really good right now. I don't know if it's because of the Remicade, my B-12 shot or what.
I just finished my Pearl Jam Video which is Crohn's related. I sent a copy to Spencer at http://www.pearljamlive.com and he is going to host it. Hopefully, he will get it by this weekend. I encourage all of you to watch it.
Oh and jgcartman2, I'm glad you are controlling your diet. I wish I could do the same...I'm working on 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"
Comments
I'm a little nervous I guess of what he'll come to for a conclusion. As as yet, no meds are responding & the doctor said he wanted to do this before he puts me on something as powerful as Remicade, that's a scary thought too as my immune system is low already. No good alternatives here.
PBM, I hope the Remicade does start working soon & PJfanFORlife, enjoy that vacation!
Good luck to you all!
"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? ...
Be brave, young people! I'm so glad Mike has had a part in making more people aware of these two diseases. Back when I was a sufferer, this kind of thing was simply not discussed. Even to tell the doctor that I was incontinent was very difficult. Oh if only I had the line "I shit and I stink" at that time, how much easier it would have been. I still think it was amazing and incredibly brave of Mike to stand on that stage at the CCFA benefit in April and tell everyone that he shits his pants! Wow. And to think I had a hard time telling my DOCTOR that I had bloody diarrhea!
I wish you all better days ahead...healthier times and no pain. And remember that if the time ever comes when you have to have your intestines removed (with either a colostomy or ileostomy) it won't be the end of the world. You'll still be able to do everything you used to do, and one thing with a little modification!
So, I go for my first Remicade infusion on Wednesday. I am a little nervous because I don't really know what to expect & it's on the oncology floor (my Mom died of cancer) so I'm a little nervous about just being on that floor (a lot!) Wish me luck!
PBM: Did the Remicade start working any wonders for you yet? I'm worried of it lowering my immunity system. I have already lost so much weight.
Wish me luck!
Man, I hate to hear about all of your misfortune. It's been three weeks now for me, but I haven't noticed a lot of difference. However, my crohn's isn't as bad as some.
I have some depression problems to work on too. Having a chronic illness can really wear on you, so I am trying to deal with that.
Good luck to you and let us know how your Remicade goes.
Cheers to all,
PBM
Wishlist Foundation: http://wishlistfoundation.org
are such WAHHHHHHsome
people.......
I'm doing what i can
to help find a cure........
Sir Mike McCready is....THE MASTER!!! WAHHH!!!
EVENFLOW PSYCHOS H.N.I.C~FEEL THE FLOW!!!
"Pearl Jam fans are obsessed, they'd see the boys in HELL if tickets were sold."-CROJAM95
It takes balls to put out a UKE album!
She's walkin', yes indeed she's talkin'.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
I know you posted a while ago, but I don't have much time to check the boards often. My roommate has Crohn's and although I do not have it, I know what you're going through. She has one of the most severe cases ever documented. She is going to be 26 on Wednesday, and she was diagnosed at 15. In the time that I've known her she has had 4 surgeries and 6 overall-- 3 of them major. She's had all of her intestines removed except for what she has to have to survive. She has been on so many medications over the years that her body has grown immune to most of them-- the poor girl lives in pain every day. She's getting married in November (to my other roommate) and it's looking doubtful for her to have kids. I'm not telling you all of this to try and scare you-- like I said, her case is extremely severe.
I'm sorry you are going through this b/c I have seen what it can do to a person. I'll keep you in my prayers and I hope the medications work for you. Hang in there!
"Love is a tower of strength to me"
"I wait up in the dark, for you to speak to me"
"I'll ride the wave where it takes me"
"I did what I had to do, if there was a reason, it was you"
"I hold the hand that holds me down... I will RISE ABOVE!"
"Shit, solo or something"~ Eddie Vedder
"The best way to change something that's around you, something you don't like, is to change yourself. And I don't think you want other people changing you, I think the only person that can change you is yourself. So if you ain't happy, if you're reading magazines about generation x-ers and thinking 'yeah, I'm one of them', well fuck that. Don't let anyone tell you who you are. No, no. No one can tell me who I am."~ Eddie Vedder (9/26/96)
I started thinking about my symptoms and Crohn's, which I never would have heard of had it not been for Mike stepping up to the plate and raising awareness. I realized if someone like him can tell the whole world about his problem and not be embarrassed, I could at least go to a doctor. With the help of my wife, I gave in and finally went. Although I was initially diagnosed with an ulcer, they eventually figured out it was IBS. I was put on Librax (with clindinium) and have been feeling better.
What I've gone through is no where near as tough as those with full blown Crohns... I admire your strength and determination. Do your best to control it, don't let it control you.
Not too much scares me anymore. I hate to hear of your roomates misfortune. I had a really bad period with my Crohn's. Shortly after I was diagnosed, I got an abcess on my liver and 1/4 of my colon removed. I have a nice "zipper" scar down my belly that PissBottleWoman likes to show off to people whenever she gets the chance.
lovebuzz,
Man, I know the feeling. Last year, at St. Louis VFC I had to down a couple Immodium pills before I went to the show. While I was at the pre-show, folks were drinking beers and eating food, but I had to abstain. Don't get me wrong, I drink a little for special occassions, but I didn't want to mess up my Pearl Jam show. The last thing I wanted to do was hear Save You from the inside of a stall at the Fox Theatre.
PBM
Wishlist Foundation: http://wishlistfoundation.org
I am so glad you mentioned the depression, I've been going through that also. It is a lot to deal with. It's so nice to relate to others about this (as sucky as Crohn's is!) Good luck to everyone fighting this!!!
The best way to help beat that is by talking to others. Coming to this board helps a lot. Just getting my mind off of my problems is great. Talking to others who understand is equally as great.
If you have any problems, ask I'm an ear.
PBM
Wishlist Foundation: http://wishlistfoundation.org
KAOS That sux so much, im sorry that happened to you. I would freak out if i woke up in the middle of that shit what the hell... Whats theyre deal??? I wouldnt go back to those people to get that done, omg, its not hard to set up anesthesia, that sux....:(...good luck
"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? ...
PJChic9...you may want to try a little ganja here and there or maybe try nexium over zantac..I know I use to have problems with nausea....
KAOS I use to wake up in the middle of colonoscopies but now I have a doc who completely puts you under for the procedure. So now the worst part is the prep...
ccfa.org
http://organicconsumers.com/
I hope that everything goes well for you.Just keep thinking of Canada.
"You damn well can't lick the system,but you can sure give it a good fondeling."-sleazy estate man(Hugh Laurie on A bit of Fry and Laurie)
"Judas Priest on a two stroke moped!"(Stephen Fry)
Thanks for bumping this up....actually, I am doing really well.
I have changed up a few medications and now I am doing good.
Remicade and my B-12 shot seem to be working. We're working on a fundraiser for the Canadian tour, so be on the lookout. The CCFC has been very supportive of the idea.
See you soon in London and Kitchener.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Anyway, haven't noticed much of a change yet, they (the gastro doc & the nurse) tell me after the second treatment you may feel some changes. And the depression that is going along w/ it, I don't know. I don't really want to go the doctor about it because I feel I am already on enough meds. I think I can handle the depression part of things, I know what to look for & thank god I have some good friends!
I'll be tired but I can listen to some PJ on the way home to help keep me awake long enough for the ride home-I get so tired! And then, I am so excited that Pink Floyd is reuniting for the Live 8 show! So, I have to focus on the good stuff!!! The Remicade treatment will suck, but hey, free cookies! (Gotta have a sense of humor, & when you walk in a hospital & see a woman getting an infusion for Crohn's & eating chocolate chip cookies, well, that's gotta be funny as hell to see!!!)
Good luck to you guys all fighting this thing too!!!
ACCBootleggoddess I sure hope you went and got checked out. No one needs to be in pain! {{{ACC}}} I would love to see you in CAnada! I'll be at the Vancouver show no matter what! Its been a shitty couple of months. My kidneys stopped working and I've been having really bad flare ups. :( But I told the doctor last week that no matter what they have to drug me up enough to get me to Canada! LOL I'm changing my diet as well again, as it now seems that there are things that have become a problem that weren't issues before. But as long as I have my music, I'll be happy. Chiquimonkey and I will be together with others at Vancouver. We should have a kick arse fun group. I'd love it if you could join us.
I go in for my second treatment in about 3 1/2 weeks (July 18). I'm not as tired as I used to be and my energy is coming back. I think this stuff is really working out after all. We're sending good thoughts along your way.
MASSDISSIDENT,
Thanks for the positive thoughts and thanks for the support. We're working to get the word out about Crohn's and hopefully, find a cure.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
Would you please take just a minute to address your personal struggle with Crohn's disease, the strides that are being made in finding a cure and what each of us can do to help? Thanks for all you do. — Matt Thompson, Oklahoma City
I have had Crohn's for about 19 years. It is a debilitating disease that affects my colon. I have lived most my life with chronic inflammation and constant pain with immediate diarrhea. Due to the symptoms, it's one of those topics that doesn't make the "dinner conversation" list and that a lot of people feel embarrassed to talk about. I started talking publicly about it because I didn't want people to have to suffer silently — it's disempowering.
More than two million men, women and children suffer from Crohn's disease and/or Ulcerative colitis. I am currently on the Specific Carbohydrate Diet along with medications such and Imuran and Colazal. The diet, I believe, is the only thing that has worked for me, though. People like you can help by contacting the Crohn's and Colitis Foundation of America and finding out more about these diseases, or by donating money for research at http://www.ccfa.org. The CCFA helped me figure out that I was not alone with my disease anymore. Every time I make a new IBD connection I feel hopeful!
I go back for treatment #2 of Remicade on Monday. Cross your fingers.
PBM
Wishlist Foundation: http://wishlistfoundation.org
Hey!
I wanted to see how you are feeling now. Has the Remicade been effective for you? I just finished my third infusion this week & it has not helped me at all. In fact I'm in pain every day. The doctor sent me for a CT scan Thursday which went poorly, it's amazing that something as simple as a CT scan can go poorly but it did. I had to drink 4 glasses of that awful contrast, & then have it injected in me for the scan itself (that hurts like hell when they first shoot it into your veins). It took 7 stabs w/ the needle before they got the IV in. I feel like a human pin cushion! But I can handle it. What I do not like is the not knowing why the doctor cannot figure me out! He said I was difficult (ha ha, I could've told him that!!!) But he meant it is strange that the Remicade hasn't healed the ulcers yet & I am still feeling so poorly if not worse. If he can't figure out anything from the CT scan he is thinking of sending me to Boston. It is just discouraging. And it really brings me down. I like that I can post in here about it, I don't like to go on about it at work, because I don't want to sound like I'm whining, but fact is, I hurt & I'm tired of it. And I just picked up a part time job to supplement my regular full time job, hope I handle it all okay. I haven't discussed the second job w/ my doctor yet, I was afraid he might say it's a bad idea! Stubborn as I am, I will mention it to him next week when I see him.
PBM, I hope that the Remicade is working for you & am interested to know if it is! Good luck to everyone else battling this!!!
Please keep posting in this thread...that's what it's here for. My second treatment of Remicade went well and I am feeling really good. It's the first time in a while that I've felt good physically and mentally.
I've cut back on soft drinks quite a bit. I am drinking more water. Now, if I can start eating a better diet, then I'll be on the right track.
Please keep me posted on your progress. Since we don't have a Crohn's support group in this area, I go to this site quite a bit:
http://www.healingwell.com/community/default.aspx?f=17
Everyone is friendly there and have great advice.
You are not alone. I've had bad days...many of them, but there is a light at the end of the tunnel.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
"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? ...
Yeah, I have to go out in the field and shoot footage for a lot of commercials. Sometimes I get stressed about it. The first thing I do is stake out the bathrooms.
It's really wierd...one minute I'm fine and the next minute my stomach is going crazy.
By the way, even though the Ten Club contest is over, I've finally gained enough energy to pu together a video about Crohn's set to Pearl Jam music.
I am almost done, so hopefully, I will figure out a way for everyone to see it.
Cheers,
PBM
Wishlist Foundation: http://wishlistfoundation.org
Thought i'd update you all on my progress
I've been living with Crohn's disease for about 5 years now.
for awhile i lived by the whole pentasa and denying my health and not eating the right foods. Now people who say this disease does not take a mental strain on you is lying. It mentally drains you.
February of this year I made a bold decision let me try taking care of this my own way and not listen to the doctor's who want me pill popping until the day I die. I decided to go off of the pentasa and increase my vitamin intake. I also altered my diet and gave up alcohol, meat, fast food, chocolate, caffiene basically all the bad stuff.
Let me tell you I recommend this to anyone because it works! I haven't felt this good in about 10 years and i don't have the "bathroom" worry anymore when i am out.
I do love the foods and all that but i made the decision that I could not justify putting my health ahead of food.
I had what my doctor called a level 4 out of 5 on the crohn's flare up where my intestine burst and I had part of my colon and a foot and a half of my intestine taken out.
Everyone that has this disease please keep fighting it. It makes life tough that is true but whatever does not kill you makes you stronger and it actually makes you truly realize what is important to you.
PBM I hope all is well.......
I cannot wait until the Toronto show for PJ....the jam have pulled me through tough times and they are the most "real" band out there.
Thanks for reading and take care all of you.
Thanks for your progress report. I actually just got back from my Gastro. appointment. I am feeling really good right now. I don't know if it's because of the Remicade, my B-12 shot or what.
I just finished my Pearl Jam Video which is Crohn's related. I sent a copy to Spencer at http://www.pearljamlive.com and he is going to host it. Hopefully, he will get it by this weekend. I encourage all of you to watch it.
Oh and jgcartman2, I'm glad you are controlling your diet. I wish I could do the same...I'm working on it.
PBM
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