Intro to my life with Crohn's

[mguruj]

I have Crohn's disease. Yeah it blows :(

[jOeCoOL9111]

i was on pred for a loong time for my chrons and i got austoproosis

[HypnosisForInsomnia]

You're the stupid bitch who harassed me in several messages on behalf of Cara Loraw (Nisiyouri). Hope your condition eats you alive you pathetic piece of shit.

[HitMeWithIt]

@HypnosisForInsomnia Wow.

You really are a sensitive soul.

I trust you are well and not dying yourself. Pity people like you. you cannot enjoy your paltry exitence. You haven't even learned how to control yourself, let alone interact rationally with the world around you.

[onstageagain]

@HypnosisForInsomnia Excuese Me? Your worst than a animal! Territory wars are VERY common in the animal kingdom. Killing for "sport" or just for entertainment is exclusively human. Animals DO NOT kill to provide entertainment for themselves. Humans are the only idiots that do that. Examine your self... & Don't have children. Our prisons have enough of you idiots on death roe.

[HitMeWithIt]

Hello there hurricanerae. I just found your video searching fro Crohn's. I've had it since I was a young kid. I'm now 36 and had a few surgeries etc. I just wanted to say great vuideo. I hope you are doing well now?

I see you haven't made many videos so I hope this is because the Remicade worked so well and you are now too busy??!

Oh and you look gorgeous too ;)

[1987HRC]

Thank you for sharing! I was recently diagnosed. Hope you get to feeling better....I know how it can be :P Keep your chin up :D

[MegaCocacolas]

keep fighting your not the only one.

[62river]

I know how you feel ,I've had crohn's disease for 30 years now . I hope one day they find a cure.

[suicidechickenshit]

The Gerson Therapy claims to CURE crohn's disease.

[HitMeWithIt]

@suicidechickenshit there is NO cure. Please don't say there are because a lot of people will just jump on that and not research it...the result is they get scammed and some loser gets rich off their misery.

[HypnosisForInsomnia]

@HitMeWithIt I was told by my doctor in 2002 that I would be "terminal" within a few years, and dead a few years after that, from COPD. I am no longer diagnosed with COPD, which is supposedly incurable.

Rather than share my CURE for COPD, I keep my mouth shut, lest I be called a quack.

[HitMeWithIt]

@HypnosisForInsomnia Quack BS. By your tone you are obviously implying somehow the medical Drs were conspiring 'Supposedly incurable' is sarcasm right? I bet you took some mixtures of your own like Silver comopund or Homeopathy and are convinced! Try every other possible and MORE PROBABLE explanation first did you? Before ariving at the erm, ridiculous?

*laughs*

[katiekins77]

I start Imuran on monday....while tapering off of my prednisone. God I pray that this drug will work in place of the prednisone! I hope that you are feeling well these days darling!

[basketballfan300]

Hey nice! I am on that too. :) it works!

[amandamht]

I will pray for you and all who have Crohn's. You are a brave and a fine girl. God will watch over you. Take care.

[pnzgirl]

i really hope he does..... i was diagnosed two weeks ago- my specialist hasnt told me anything and im so confused and im scared about what my future will be like. i dont know if its likely to get worse, i dont know anything, i really do hope that someone will watch over me.

[katiekins77]

you aren't alone sweet heart. you are never alone. even when you feel like you are...you're not! i know that i hated hearing this over and over, but the only thing to do is stay strong. Try to be positive and make sure you have a great and trust worth GI doctor! It is a huge part of your treatment and well being. Crohn's develops differently for every one. It could get worse, but it could get better. Hang in there hun! <33

[pnzgirl]

well at the moment i only have the occasional stomach cramp and irregular bowel movements, im off my prednisolone and i feel fine! perfectly healthy! so i am putting all my energy into staying positive, i will be ok, i wont let it run my life and it wont get worse coz il look after my self :) thats all i want and il do everything in my power to have it that way! All the stories i hear scare me so much, if only i could stay positive for everyone.... thank-you! xX

[911truthseekers]

I dont know if I have it, but my stomach is really swollen and I am in a ton of pain all the time. The only thing I have found that helps so far is a heating pad or shot of vodka, probably not the best thing, but still looking for more permanent relief, any suggestions?

[katiekins77]

yeah...go see a G.I. doctor!

[911truthseekers]

I have been feeling alot better when I eat Activ8 yogert it have 8 good bacteria in it, not like the crappy yogert they sell at walmart!

[warrax111]

Ppl, don't trust modern medicine, its a fraud, big one, that is killing people. Try fasting, its free and it solves most of psychical and digestion issues. I believe, periodical fasting and vegan food heals Crohn disease, but most important is psychic, you need to believe, its healable.

[hjaltalinator]

fasting is not a good ide for regular use! the last thing that someone whos loosing bodymass because of crohns is suppose to do is regular fasting. 10-15 years ago they asked patients to go and se their psykietrist cause it could be something mental (faith), not anylonger. diet - yea ok ide perhaps but it still doesnt cure the problem cause we dont understand how it came there inthe first place. so until they understand the problem they need to fight the imflamailons

[warrax111]

Every disease is just energy disorder in your body, so there is a tactic, that bring back harmony and order into body. Its true, that in some cases, body or mind is in so bad shape, that it doesn't have to survive tactic, that is too radical, and it dies by aging, if tactic is too mild, and still don't heal the disease. But, every advance in life is worth,you will be honored in next life, if you choose to fight disease, cause it is love to your body, that starts this fighting,and love is honored

[hjaltalinator]

stop that nonsence. sick people need tested n prooven remedies, understanding from other people and help with what they cant do themselvs, no hocus pocus.

[warrax111]

Understand, that love is healing energy, not "prooven n tested" chemical remedies. If you put your health blindly into some others hand, and you don't try to solve anything, you will not heal. Never.

[hjaltalinator]

love is healing, but just so far. its not just some other hand. it has to be replicated with same results. thats the beuty. tested for plasibo efect, and not just one time miracle. but your right with diet we should eat much less meat. but you need to understand that you cant proclaim something as a wonder remedie whithout proving that it is so or refeer to someone who has done it. replicatible tests

[katiekins77]

LOL bless you for trying to talk sense into that person. I have all of the love in the world but it has yet to cure my crohn's lol sorry i can't stop laughing. that's really hilarious. I am a firm believer in MEDICINE!

[hjaltalinator]

i can give my love to all of you folks. i havent heard anything from warrax for about a month now ... guess he ran out of words. his quota is up

on the other hand the world would be so much better off if there was a placebo pill on the market that can cure any illness :)

[HitMeWithIt]

@warrax111 You moron. Anyone can see this is a serious video from someone who is/was ill. Your mumbo jumbo has no place here...

Chemical Medicines (I won't call them remedies like you) are ALL WE HAVE when this illness really takes a hold.

People like you just make my pain worse when I get angry and want to smack you in the mouth.

[warrax111]

@HitMeWithIt Calm down. You need just proper knowledge. You need to believe in god, and as a reward, you'll be able to trust, what I did say.

Modern medicine is killing ppl, and they DON'T WANT you to know cure for disease. Understand? If they give it to you, You'll never come there again, and lot of ppl too. They will fall in financial system. It's end for them. Just use brain... financial rules are predictable... as the behavior of institutions, build upon it.

[HitMeWithIt]

@warrax111 Have you ever heard of being RATIONAL? Humans are not so good at thinking rationally but you take it to the limit. Excatly what you base your amazingly pessimistic and fastastic claims on is beyond my understanding, obviously.

God? God?!

I should bow out now in that case.

Yup. Best idea methinks.

Ciao.

Some poeple actually live because of medicines. There, I accidentally got into it with you when I just didn't want to. You can have that one for free.

Now I'll leave you alone. :P

[LaLa44044]

Does Remicade still work for you? It worked for me for about a year, but then it stopped working. My doctor has me on a research trial for Humira right now, and it works pretty well so far. It's taken by injection instead of infusion.

[Morbieus]

I dont have crohn's but I do have extremely severe eczema, which has also made my life miserable for almost 8 years at this point. They just started me on azathioprine today after finally giving up on other treatment methods after having broke my femur from the constant systemic and topical steroids. Hope things are better for you now... and gives me hope that immunosupression will finally make life worth living again not being in constant misery without the 80mg daily prednisone.

[wayneo169]

I just watched your video and I feel your pain, I also have crohns, I hope you stay well :) I do have a ? for you.. I also created a video on youtube at wayneo169 but I don't know how to advertise it, I cannot quite figure out youtube's advertising can you help me with some advice ? again, I wish you well ... wayne

[hurricanerae]

Sorry everyone for not always responding to comments or for that matter, not making a videos in a long time. I'm glad that people are responding to each other and feeling less alone. I really want to thank everyone who has responded to a comment or question. You are great caring people and I wish I could be more so more often. Thanks everyone.

[euesmom]

@hurricanerae You Go Girl!! Thank Yo soooo much for your courage and strength to share your story!!

[flyingonland]

i got colitic when i was 7 in 15 now and im dooing ok will all get throught to geather im on asacol and alot of iorn we cant aford remicade

[LivingDeadGurlXXX]

Hi my names Diana. i was diagnosed with crohns when i was 7 years old and have struggled with it all my life. crohns has taken a lot from me...my childhood, friends, and my parents dreams. i have had over 15 surgeries. i have been on various medications and steroids..countless procedures..and yes i have had an illeostomy for 5 years. right now im in the hospital...again..i have been on 6mp, pretizone, cipro, amoxocillin, and so many more..i understand your pain..amazingly enough im still here.

[basketballfan300]

hi! my name is heather. omg! i feel so sorry for u! hey look i have crohns too and girl hang in there! i am sure u will get better! you are a tough cookie! and think about it this way, people might have something worse. oh and doesnt pretizone suck! like i swear my face looked like a ball! haha i am getting surgery again! its only my seccond time but its still scary! ahh! lol i get it in two weeks. omg. so anyway if you ever want to email me fill free to! i am happy to talk. stay possitive!!!!!

[thegirl9488]

hope you feel better soon!!

[basketballfan300]

hi, my name is heather. i have crohns too, and i am only 12. ya to be honest with you, i dont mind having it. i mean like i haven eaten in 3 months but i mean who cares, as long as you keep a possitive attitude you will get through this. i am also on remicade. infact i just got my 3rd dose on monday. i think you should go to the camp painted turtle. its the best and everyone there has crohns. so just think about it. and stay possitive. you look negitive.

[CivicBoy253]

Hi im dave, I too have crohns disease. I've had it for about 8 years now. I was diagnosed when I was 14. Remicade is a real good drug, it has given my life back but it is kinda hard holding a job with all the appointments but I was wondering what is this "panited turtle camp"? And where are the locations if you know? Can you please reply back. Thanx

[PENWESTERN]

I understand and was diagnosed in 1999. I am on or have been on the drugs you mention.

I was pain free for a few years but the inflammation was still there. Two GI Doctors could not figure out why no pain but there was not and still is not.

Right now (2009) I am on

Imuran/Prednisone and start Remicade next week.

I add fish oil too (on my own) and papaya enzymes though my Doctor has not mentioned the last two items.

[capperz176]

My life revolves around them and is driving me crazy. I have to thanks my girlfriend, Mom and brother for being there every time I'm sick on a hospital bed (every two months)without them I'm pretty sure I wouldn't be here right now.For everyone with this disease out there I wish you all the best and please find a good doctor because that's the only option we have. God bless you all!!`

[capperz176]

Hey guys, my name is Dennis I'm 24 years old from East Elmhurst NY. I've been suffering from Chron's disease since I was 15. Sometimes I just feel like giving up on myself because of this disease, some people just don't realize how serious is to be in constant pain and having to make time for everything including my best friends since I was 15 : Prednisone, Flagyl and Pentasa.

[Tammy2trueblues]

I've been using the Remicade and Imuran combo for 6 years and recently have stopped the Imuran.  Remicade is truely a miracle for me because nothing else ever helped and I was too sick. I also have endometriosis. And had a colon resection surgery done this past summer due to an obstruction in my gut. I've been out of work for nearly 2 years, but since my surgery feeling better. I really happy you made this video and I may try to do this if I can. I'll keep you in my prayers.

[moonbeamjellybean]

Thank you for posting these videos. Right now having a bad flare up of my Crohn's. Im still in highschool. Since my Crohn's diagnosis is simply a "working" one (the doctor's still are not sure what is wrong with me) I am on a lot meds because they basically have give me one per symptom. The only meds I am on are preventative so I cant do anything about it if the pain gets really bad. I send love and sympathy to all patients out there.

[kathers123]

asacol works for me!

[josh48315]

i was on asacol, humira, and immuran but have recently stopped taking immuran on my 1 year anniversary of no flares. i was diagnosed in 2006. i have been in remission for over a year now, and had a slight flare up that was gone before it started. i believe that flare up was caused due to heavy drinking of alcohol the night before (hard liquor). i dont drink as much as i used to, which is hard being a college student. when i do drink it is usually beer, which does not seem to harm me (yet).

[dynamicwellness33]

I wish everyone luck who has Crohn's I have family members who have it, and I have seen its effects. But there is hope

I encourage everyone to ask themselves, "What is causing this disease?"

There is an underlying cause of crohns, the body doesn't go out and decide to attack itself for no reason. And its definitely not caused by a deficieny of prednisone or imuran.

Pharmaceutical medicine can only treat symptoms, essentially the effect, and totally forgets and ignores the cause.

[dynamicwellness33]

Gluten free, dairy free, and soy free diets can provide great help, they are very anti-inflammatory for the GI.

Potentially finding an alternative health care practitioner who can check for parasites, h-pylori and or other bacteria/fungus in the GI tract can help too. Any questions please feel free and ask.

[retortijo]

Hello.

I was diagnosis 3 weeeks ago with CD

Asacol cause me bad secundary effects.

Which medication or diet do you recomended

I will apreciate your opinion.

Sorry for my english .

[bakabana1966]

i can't tell anything good on Crohn's, which rules my life since 38 years, had parts of small and large intestines taken out.

and now i'm on IMURAN 200mgrams a day, seems it helps, but the technical problem is there now, i was hospitalized two times this year for blocked intestines nothing came out anymore !!

[bakabana1966]

yes i took seven years steroids, and they are very bad to me, my teeth fell out like apples from a tree and i never could sleep good woke up crying and all the shit, i was rejected by my family and several 'so called'lovers left me behind,i live alone now and enjoy myself listening music and the nature is good and so much of positive energy.

[Tammy2trueblues]

I would like to talk to you, I have crohns and been on the Remicade/Imuran combo for almost 6 years, just seems I'm getting worse all the time though, I had a colon resection about a month ago, I truely sympathize with you, I have been going through depression cause I am just sick all the time.

[hokiepat]

Have you noticed any problems with severe depression that go along with this disease? I'm having a big flare up now and I havent felt this down since I had surgery to take out some of my small intestine. I wonder what percentage of people with crohns also suffer from depression.....

[BleachedSurfJunkie]

Well, as you're inflamed, you're not absorbing enough nutrition to feel lively.

I don't tend to feel depressed like I used to.

Before I was diagnosed, I was literally on deaths door, I had a wheelchair, I'd lost 6 and a half stone, amongst other stuff, and I guess I'm greatful for actually coming out of that.

The only time I get really depressed is when I have to go up to 5 steroids a day, they turn me insane!

[Justicexhaze]

Huge problem with Crohn's patients (or anyone with chronic condition) depression. Have had crohn's 35 years.. suffered depression since I was 13 but didnt know it till like..mmmm.. 8 years ago. Get help.. get meds.. they dont make you zombie like.. they can help..bottom line crohn's sucks.. going for my third resection soon..will put up videos of recovery.. hang in there.. you are not alone.

[nessalu]

BTW, I know how you feel about steriods.. (prednisone) THEY HELPED MY INFLAMMATION but RUINED my BODY for LIFE!!!

[BleachedSurfJunkie]

In what way?

[hurricanerae]

Steroids can cause a lot of life long side-effects. I suggest if you are really interested to look it up. Just off the top of my head I can list: weakening of bones and teeth, glaucoma and other eye troubles, impairment of adrenal glands.

[nessalu]

Hey girl.. I'm 26 and was diagnosed with Crohn's back in 1990.

;(

I had one helluva childhood.. you could imagine.. several surgeries, appendicidious, fistulas, jusst in and out of the hospital for months at a time..

But luckily for me.. (KNOCK ON WOOD).. I have been in remission (pretty much) for the past several years...

I hope you are doing well now girl!

If you ever need to talk.. hit me up, alright?!

;)

Peace & Love

Ness

[7mumfred7]

Great Poem. It could have been written about my inter-personal stuff too. Or lack of it.

[hurricanerae]

Thanks. :)

[SpecialBlend233]

Im so glad people on here actually respond. I'll let you know how everything goes for me. Me second infusion is in just over a week. Seriously:) Thanks again for the response both of you.

[SpecialBlend233]

Welp, I just had my first remicade infusion..I would really love to know how your doing. I didn't have a bad reaction so I'm hoping this works for me as NOTHING else will. I'm 19 Years old. I hope your doing well...I don't konw what to expect...I think I'm feeling better? Its only been 4 days since my first infusion...did you start feeling better that fast?

[nrcowley]

I've had it in the past and am about to start it again. I usually start to feel better about a week after, then I'm awesome until about a week before the next infusion. I get them every 8 weeks. Hope it works for you.

[hurricanerae]

My experiences has been fatigue for the first week after an infussion, then I would often cath a cold or tlu. But these are just my experiences. I have now others with far less side effects. Good luck.

[hurricanerae]

In my experience, it took 7-14 days to truely see the results. I hab many side effects: fatigue and susepablitiy to colds and flues. Hhowever, 80% of the crohn's symptoms have subsided. I still get D and the ocational abdominal pain. But I hope the his suside over more uses of the drug. Goof Luck. Share your stories.

[nrcowley]

I absolutely love your poem. I write as well, but have never taken the time to channel my feelings about Crohn's into verse. You did a beautiful job and I have truly felt the same way when on prednisone. I feel inspired...might have to write that piece...

[hurricanerae]

Thank you very much. I'm glad t inspired you.

[CivicBoy253]

I've had crohns for 8 years now and experience it all. Predisone is a good drug to take. It will make you eat alot and help you gain weight but it also has its down side because it does demage to your bones and after time you'll have to stop taking it.

However remicade for me is amazing! It has controlled my fareups and has given me my engery back to hold a job and live a normal life. And to put icing on the cake, has me gaining weight :)

[robtech151]

i love to poop!

[robtech151]

some people dont know the real truth about prednisone thy dont realize that in do time it will make you swell like a ballon and cause pancreaitis!! ya real good!!!

[blakekewl]

How dare you talk bad about PredniSONE! I love PredniSONE i was on 120 mg last time I had a flare up and it was AMAZING!

[hurricanerae]

It may be a wonder drug for inflammation, but I have very bad side effects. So bad I would rather be in pain than have the side effects.

[amband212]

wow what an amazing poem!

[hurricanerae]

Thanks!

[robtech151]

they are about to put me on remicade what should i expect?

[hurricanerae]

Don't know exactly what to tell you; everyone is going to respond differently. I find I feel really tired after the infusion for a few days. It's been just over a week since my third infusion, and I'm feeling pretty good other than catching the flu. I find I get sick usually a week or two after an infusion.

[robtech151]

my name is rob i am 36 and i have crohns.i am having trouble holding down a job should i apply for ssi?

[hurricanerae]

I have had trouble holding a job. i mean to talk about this in a video sometime. I have not applied to assistance, but I have moved back with my parents because of money and health.

[iloveperkins]

Understand about the irritation of the pain - makes you feel like doing nothing at all, at least for me. One minute I can be feeling ok, wanting to do something, then pain comes along and makes me want to crawl into bed. Hope your third infusion helps.

[fratelemeu]

Remicade works for me since the first infusion......I had no more pain,I start to eat and gain weigh.............do u still have pain after 2'nd infusion?