i'm off the drugs

[asheynoelle]

I wish you wouldn't go on another drug trial. It seems you doubt the drugs help. I think you're right. You are adorable and I encourage you to trust your instincts!

[part135]

I'm 61 and have had crohn's most of my life. It was only diagnosed three years ago though. After removing a few feet of small intestine they put me on meds that made me feel like crap (pun intended). I stopped the drugs after 6 months and started to feel better. Not good but better.

My Dr said "You"re in remmision but you are also in denial". I wnet out and got a teeshirt that says "Denial Works!".

[Raydensheraj]

I take probiotics,Iron, 1 and a half Imuran, 1 X Pednisone, 3 Calazal Capsules( horse Pills i love )...ive been doing better then a couple of months ago. I also take Vicodin,Tramadol & Lomotil for bad days...lol.

its okay i guess - live is halfway normal again.

[002Mercury002]

yeah immune suppresants make you sleepy one week i was put on imfliximab infusion, like uber immune suppresants, and they knock you stright out, then i had a blood transfution i i had sooo much energy i felt like running a marathon at 4 am that day, then i was back on the infliximab and my body clock was screwed

i heard about space food being a possible cure on the bbc news, something about being soo soft and easy to digest, but his may be an expensive way to eat/live

[smackdaddy542]

i was diagnosed with crohns at 4 yrs old...im 19 now.

[Pat05673]

I'm on methotrexate and there are some times (usually on the day I take my 25mg dose) that I feel like crap - tired, nauseous, and with a headache. It work to reduce Crohn's symptoms, but I hate how it makes me feel. If I drink two beers the night before (Yes, I know I shouldn't), then it is worse. If I hydrate heavily without drinking the negative impacts are minimal.

[OrlieT]

For anyone wondering, ABT 874 is an anti-interleukin. Slightly different technology than the tnf alpha blockers, but same idea.

I got dosed up on Humira about 6 weeks ago and within a week I needed my appendix out. I've been sickly ever since. Anyone else have this fun experience?

Good luck to Ilovecrohns...I hope this drug does the trick for you.

[HannahRabbit]

I know what you're talking about. I've had Crohn's for a couple of years now, and I got frustrated and decided to stop taking my medication a few months ago... I still have a Remicade infusion every 8 weeks, but my doctor said I'm now in remission... Strange, right?

[ilovecrohns]

Ok, the drug that they have offered me a trial for is ABT 874. It doesn't have a name yet so that's what it's going by. I guess it's a phase 12B trial. For the first 3 months it's a possibility of being a placebo but after 3 months if i don't get any better they switch to the drug guaranteed. It's administered via IV by a nurse. Not sure how often yet. I'll be making a new video this week.

[deathbycanon]

What is up with doctors and the RMAT treatment! Every time I bring it up they look at me like I'm crazy. Some tell me it doesn't work - well neither does anything else they have tried! Just let me do it and I will be the judge! I am so sick of the drugs like methotrexate and prednisone - many times dealing with the crohn's is better then the side effects of the drugs. Hope your new one works better.

[socceric17]

@deathbycanon I know dude! I tried to do the RMAT treatment but my doctor refused to. We got in this heated debate and eventually my doctor just stormed out. Well, after that, I quit my meds and tried an alternative method (Bob Beck protocol) with Cat's Claw herb that targets MAP bacteria a different way and been in remission ever since. My doctor is clueless and of how I went into remission but still refuses to let me try RMAT. I hate doctors.

[dcrypton]

Maybe the trial will be on Low-dose Naltrexone, but I bet anything it isn't because it is off patent and there are no big drug companies to push it on doctors. Maybe after the Pennsylvannia trials are done some doctors might take it upon themselves to learn about it and trial it

[dcrypton]

Yeah if it was Tysabri I would opt out too: no one needs brain viruses. The whole idea of preventing one's lymphocytes (an immune white blood cell) from entering the brain seems a little sketchy, and how does that translate to crohn's anyways?

[jacknifedbl]

i wonder if they are going to give you stem cells?

[Chivalryaintdead]

I'm on Humira right now and it really isn;t as effective as it was supposed to be, though it has helped.

One thing you can do to control your bowel movements is to use coarse ground Metamucil type product.

I use organic Psyllium husks and mix it half and half with an orange flavored version, that way it doesn't taste too horrible.

[stevenv1992]

Ive been on the immunesupressent Azathoprine(Imuran) for 5 months. It helps control the symptoms; but I sometimes feel Ive just been kicked by a horse.

Your brave in stopping all medication. I know where I will end If I stopped taking my meds: hospital!

Good Luck.

[stevenv1992]

I feel the medication used to treat Crohns and UC was not developed specifically to treat them.

Hopefully the medication your trialling is.

[iloveperkins]

I've been on Azathoprine for about 2 months now. They say it takes like 3 months to fully work or something, so I guess I'll find out in another month if it's helped much. So far it doesn't seem that great. I'm decreasing the steroids at the same time, and at 6mg my symptoms seem to be coming back just as bad as the were.

I haven't been kicked by a horse yet, but I'll look out for that! :P

[7mumfred7]

Have you heard the Tysabri updates? Used in MS for 2 years now, something like 30k patients on it and they are all fine, every single one, no worries.

Dollars to Doughnuts it is Tysabri.

[7mumfred7]

Your future treatment sounds like Tysabri, which has a "completely different mechanism" -can you check that?

Thnkx,

Godzilla (Steve)

[ilovecrohns]

well if it is Tysabri then there's a good chance i might opt out of that one. i've read some stuff that i didn't like about it. i guess we'll have to wait and see