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GI wants to tranfer me to research hospital

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Crohn's Disease
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Posted 9/8/2013 11:15 PM (GMT 0)
All my treatment has failed so far and my GI doctor wants to transfer me to Hershey medical center. My question what can they do for me there? Is there treatments they can give my GI I can't? GI doctor is not providing much info and I have no idea what is going on or why she thinks it would be best. Any answers you have would be greatly appreciated. Thanx
Posted 9/9/2013 12:43 AM (GMT 0)

I'm sorry I have no imput on the research hospital. I suggest you get some more detailed information from your GI about why he's opting for that.

Have you been on Remicade yet? It's the most successful treatment drug we have right now.

Posted 9/9/2013 2:04 AM (GMT 0)
It sounds to me like your gastro is feeling overwhelmed and frustrated in not being able to help you achieve remission and wants to send you on to a facility and group of doctors who have much more experience treating Crohn's disease and in touch w/the latest research and drugs showing promise for Crohn's disease treatment.

Good luck and God bless.

Posted 9/9/2013 3:26 AM (GMT 0)
I am sorry to hear that your doctor isn't offering much advice. I know how frustrating it can be to feel like you're "in the dark".

If possible, I suggest doing some of your own online research on the medical center. That way, you can decide if it meets your own personal standards. I would also ask your doctor to provide you with the Hershey doctor's contact information so that you can speak with them before making the switch. If you're going to go to such great lengths, I would want to ensure I was getting the very best.

Finally, make sure your doctor is aware of how uncomfortable you are with the lack of communication surrounding this. They should definitely be offering at least a bit more of an explanation, as well as providing you reassurance on why this is the best choice.

Best of luck!
Posted 9/9/2013 11:50 AM (GMT 0)
Speaking from my own experience, I'd make the switch. My former GI was a big enough person to finally admit to me that I had exceeded his capabilities and needed a CD expert. I'm currently at a university hospital in Pittsburgh and it's probably where I should have been all along. I really feel we all get better care with an IBD expert that a general GI --- JMHO. BTW, I've heard good things about Hershey.
Posted 9/9/2013 1:23 PM (GMT 0)
Yes, this could be a good thing-an IBD specialist at a research hospital will probably know about clinical trials that may be suitable for you. That's what happened when I was referred to research at the hospital I use. Hope you get all set up and feel better soon.
Posted 9/9/2013 6:14 PM (GMT 0)
Yes to all of the above- my own GI isn't at a research hospital, but specializes in IBD and Hepatitis. He's been treating Crohn's for longer than I've been alive, and is the exact opposite of many of the horror stories described on this board (I think he's more concerned about my symptoms than I am, most of the time). I was diagnosed within a week of being referred to him because of nausea and diarrhea the student health center couldn't explain. After seeing people's experiences here, I know how lucky I got, and I'm never going to see a GI without extensive experience treating Crohn's.
Also, at a research hospital the doctors will be better able to make decisions about more aggressive treatments (for example, combining 6MP with a biologic drug- most docs are hesitant to make that call, because of the increased cancer risk. But for some patients with severe disease, it can make a huge difference). A medical center is also likely to be able to offer clinical trials if conventional treatment options fail, and your providers should be up to date on all of the latest research.
Posted 9/10/2013 4:48 AM (GMT 0)
Maybe they can do more for you than he's able to at this time...to me it sounds like a positive (if there's even such a thing with this DD) I'm either allergic or nonresponsive to meds (other than cortifoam rectal meds) and I've been in a constant flare my entire 22 years of having this disease...been through 4 GI's over all these years and no one's gone out of their way to go the extra mile for me...maybe that's why I see it as a positive for you...at this point I would love to be a guinea pig if it meant there was a shot at having a life again.
Posted 9/11/2013 3:23 AM (GMT 0)
I think your Dr was smart to know where his limitations were on this disease. Going to another facility will probably be a good thing.
Posted 9/12/2013 10:20 AM (GMT 0)
My transfer is in the process after seeing everyone saying it's a good thing. I can't say I'm not worried about all this though
Posted 9/12/2013 10:41 AM (GMT 0)
Yes, it's always unsettling to change doctors but look at it as taking the next step in hopefully managing this DD. Let us know what happens.
Posted 9/15/2013 11:35 PM (GMT 0)
This whole waiting thing really stinks. Pain is made even more unbearable because I lost the custody battle and now only see my kids every other weekend :( they have been the only reason I keep fighting and now I rarely ever see them :(
Posted 9/16/2013 2:38 AM (GMT 0)
I'm so sorry to hear that your time spent with your kids is so limited, asweetroy. :( I know it can be extremely difficult to deal with custody issues.

Though difficult, I encourage you to use the time when your kids are with their other parent to focus on you getting well. It is important that even though your time with them is limited, that you give them your all when you're with them, and it can't be easy to do that when ill.

It will also help if down the road, you decide to return to court, as I have heard health issues can definitely come into play.
Posted 9/16/2013 2:08 PM (GMT 0)
If you go to Hershey, ask for Dr Jill Smith. She is one of the leading researchers in crones. She has done various studies with LDN and has great success with this drug in putting people into remission.  You are very lucky to have the oportunity to go to Hersehy.  The CD  doctors there are in so high demand, that it is almost impossible to get an appoitment, so you are very lucky.
Posted 9/19/2013 3:12 AM (GMT 0)
Yea well it was all a pipe dream. My GI cancelled my transfer and is refusing to provide me with a drs note saying I have Crohn's that I need for court. She needs to be put in her place she is a dr not a freak in God. I am very upset and depressed
Posted 9/19/2013 9:30 AM (GMT 0)
Did she say why?
Posted 9/19/2013 9:30 AM (GMT 0)
Did she say why?
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