I seriously can't do this again.

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Mar 28, 2011
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I seriously can't do this again. My doctor just emailed my sed rate to me and it's up to 68. I'm going to the bathroom at least 6 times a day with bloody and nausea almost every time. My doctor is now insisting that I must to 40 mg of steroids along with a full elemental diet with my g tube. The only thing is that it's been proven that the full elemental diet DOES NOT work! I was on that ridiculous thing completely without food for 10 days after I left the hospital after my gastrostomy placement and my bleeding got worse. Tell me, how is this man's logic even sound if he thinks that this failed treatment is going to work? The only med even proven to somewhat help is steroids, and steroids alone. He also wants me to use Rowasa again, even though I can't keep them in when I'm sick anyways because the cramping is so bad. He's going off of scewed theories that have never been proven and desperation, instead of going ahead with a new treatment [aka stem cell]. I've failed on every other medicine known to man. Best yet, this guy isn't even my doctor anymore technically, I'm going to see a new one on May 31st. And yet, because my parents are hanging over my healthcare and can't seem to detach themselves since I'm newly 18, I'm stuck being guilt tripped into a prison once again that I lived in for 3 months [elemental diet] that doesn't even work! If I can be honest, and I'm going to be since you guys can actually somewhat understand what I'm going through right now, this sucks, is not fair, and doesn't make sense. I'm tired of doctors and parents throwing the "now you don't want a colostomy" card in my face to scare me. Guess what? They haven't tried stem cell yet. I read an article that said that 80% of all the people who've done it when into complete remission. Those numbers speak for themselves. All I want to do right now is scream, even though I know it's not going to do a single thing. I'm going out with friends tonight too, so it's time to put on my game face and forget about this for tonight because I am NOT, I repeat NOT going to cry in front of these people because they're new friends who I don't know all that well and this is supposed to be a fun night going to see a midnight premiere of a new movie. And, instead, all I want to do is go crawl up in a ball in my closet and cry. I really hate cruel irony.

So, half of that probably didn't make much sense, heck some days it doesn't to me. But, for those who of you who took the time to read it, thank-you from the bottom of my heart.
 
It's sad that you are so frustrated as it doesn't help to be agitated.
Hey, if you are only doing the elemental diet to appease your parents, and you are sure it doesn't help you (and I believe you) then tell them you're on it but eat anyway - it's only ten days and you can go out and eat your safe foods.
I hope the pred helps you - remember it's your life so you do whatever you have to. When you see your new doctor hopefully he will listen to you more and come up with a better plan.
all the best
 
I hope your new doc helps you. This disease is so frustrating and to not have the support network of your immediate family has to be tough. Prayers and best wishes for you.

Have a great night out!
 
You know your body. If that diet doesn't work, then it doesn't work. If the meds don't help, then they don't help (never did much for me either). Not long now til the 28th. Thank your parents for their support but go see your new doc ALONE. Bring a list of your concerns & questions. Good luck and continue to be your own advocate.
 
Thank-you so much for the support, guys. It seriously means a lot. It really helped to be able to come on here Thursday night and vent this to you guys. I'm going in this upcoming Friday to have my g tube replaced and will see the old doc then. I'm going to have him run a blood test, and if my sed rates haven't significantly improved by then, then I'm just going to do the steroids and not the elemental diet.
 
Best wishes to you; I cant offer much advise Im afraid but i do feel for you and hope you can get sorted v soon!

xxxxxxx
 

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