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Well i have crohns and colitis and have been diagnosed since 2003 i have had one surgery since then and have been on every drug for crohns disease. I was at the mayo clinic this past July and they started me on Tysabri. I was only on this drug for a few months before it stopped working. This was my last chance drug they said there was nothing else out there for me. I started smoking weed just to try and eat and sleep for more then 2 hrs a night without waking up in pain. I cannot take steroids anymore because of the severe side affects and so there is just nothing. Do any of you really think this is worth fighting for? I am looseing my hair because i cannot keep food down to get nutrients i am 88 pounds and weak as can be i have no muscle anymore. I am a single mother of 2 kids and my children have to live with my father because of the shape that i am in because they dont like seeing me so sick they worry more about me then themselves. I am stuck with nowhere else to go and no other meds to take. Serously not worth it anymore.

 Reply posted for robinbeth.

RobinBeth I hope you're still reviewing this forum. If you already havent done so, PLEASE contact your Dr and do not give up. I've had CD since '91 and was misdiagnosed w/irritable bowel symdrom until I went to Mayo and got on Asacol in '98.

Please try to be AGGRESSIVE w/your Dr. re: meds and your symtoms.I know you're sick and tired & when feeling so tired/ill sometimes you can't think straight. If possible, get an advocate, a friend to go w/you to the DR to listen to her/him, to remind you what he said and to keep you encouraged.

All the advice I just gave is only because I was like you at my lowest point and had to learn the hard way. Its only when I dug deeper and decided sickness would not defeat me that I fought for my health. Please trust that somewhere is a drug, a treatment, and a DR that will GET YOU BETTER  - so please dont give up.

Please take care  

 Reply posted for robinbeth.

please please dont give up! get on the phone and call doctors untill you can find one who can help. there has got to be someone . i wish i could help you. i know the desperation you are feeling. i know you really dont know where to turn. but someone somewhere will have the answer you need ASAP. You really need to get help to replenish your strength. your primary doctor ought to be able to help with that. then you can hopefully get enough strength to fight .so come on take a deep breath and fight to win. your kids dont want to loose you, so dont do this to them. God you really got me scared for you !  Be strong SOMEHOW  use the phone or just go to the hospital tell them you need help . gotta start somewhere. thats what i would do .cause you are worth it !!  GOD  BE  WITH YOU !!               someone who cares  vickie

 Reply posted for robinbeth.

I hear you.  I went to Mayo and was told the same type of thing.  However, there are combinations of medications you may not have tried.  5-ASAs with antibiotics, probiotics, pick-your-immunosuppressant with antibiotics OR 5-ASAs or probiotics, you get the idea.  Maybe two immunosuppresants.  Frankly, I was not impressed with the GI I saw at Mayo - he was an a**.  A well educated a**, but an a** none the less.

I agree with the earlier post about TPN.  Let's get you nourished so your brain has the energy to think properly and then get you on some sort of maintenance regimen.

Diet?  There are all kinds of things to try with that.

Acupuncture?  sometimes works.

Mild exercise?  Can release endorphins that can lift your mood.

If you don't do it for yourself, do it for your kids - you are important to them.

Counseling, counseling, counseling - you need to call today for an appointment!

No one deserves to feel as badly as you do right now.  No one.

Please hang in there an re-post when you can!

 Reply posted for robinbeth.

Hi! Dont give up!  It is definately worth fighting-you own your body not the disease, Yes it is hard and there will be days when you just want to curl up in a ball and stay there.  Take one day at a time, try different doctor's, a support group, maybe a therapist-believe me it does help to have someone else to talk to.  There is a lot of good advice on this site as well as other sites. Read all that you can about the disease, be your own advocate and  Do Not give up!
I will keep you in my prayers. 

 Reply posted for robinbeth.

hi ya it is worth fighting...heck if i could be fighting for well over thirty years so can you...pain ya there is pain and depression of course but you said you have kids well thats when you pick yourself up and keep trying. the first thing i would do is switch drs. How can any doctor say there is nothing else out there??? I guess if your dr. sounds like hes giving up thats why you will... thats not right... trust me there are other drs who would probably look at you and know you need help more than what you have been givin...maybe you should find out about being admitted into the hospital for a few weeks and they can give you sort of a tune- up...TPN with all its nutrients will be a big help if your loosing that much weight... any kind of IV treatment just to boost you back up...I go in requesting a central line only because i have learned it works so much more than a simple IV in the arm or hand... there they can control the pain too.. check into that maybe??? i hope you will find strength ...good luck

 Reply posted for robinbeth.

I guess smoking weed didn't work?  I am sorry to hear nothing else can be done?  What kind of surgery did you have.  I had a small bowel resection and I am doing well.  No pain anymore.  I never had diareah before but now I have a hard time eating raw veggies or salads.  I  lost some weight before my surgery but gained quite a bit back since August.  I was disappointed I didn't lose weight like most Crohn's patients.  That would have been the only good thing for me.  I have been on heavy side and thought oh great; I can't even have that side effect. Could another surgery work for you?

I just started accupuncture for joint pain and neuropathy and being treated for the crohn's too.  One treatment and my foot pain subsided.  Just started this.and hope it helps with a lot of side effects that crohn's gives us as a bonus.

Don't give up yet.  There has to be something that can help your symptoms.  Maybe new doctor?  Keep reading up on everything you can.

Good Luck