Seeing a specialist... I thought I was...

[katiesue1506]

Hey guys... so I had my "after the semester" appointment with my gastroenterologist and basically it was the same old same old... I went in, asked how I was doing, told him the double Remicade is lasting about 4 weeks, laid down, pushed on my stomach, asked if it hurt, I said yes.... sigh.

So his conclusion is to continue the double doses of Remicade at 5 week intervals instead of 6 week intervals. So I asked him "what do I do when the Remicade no longer works?" I explained how I'd been through Pred, Imuran, Humira, LDN, and Remicade at normal doses, double doses, double more frequent doses and how I felt like I'm at the end of my ropes. He said "well I know a bowel disease specialist at the IU Med center, we will get you an appointment with them". So. He doesn't know. My doctor that I've trusted for almost 3 years doesn't know anymore. Makes me uneasy.

I had thought that my doc WAS a specialist... so I go to see a Dr. Chiorean next Thursday. He seems pretty with-it from his credentials... he's a Ph.D doctor and a Medical Doctor, he's actually a professor at the IU Med school. He did his residency at the Mayo Clinic, so I'm feeling okay with this decision. Universitatea De Medicina Si Farmacie Iuliu Hatieganu was his med school... I've never heard of it.

I'm nervous he will be like "ok, lets cut it all out!" or "ok let's do this clinical trial!"

I guess I'm just nervous.

 

[Jeff D.]

Have you found a GI in your area that specializes in Crohn's and Colitis. There is one at Vanderbuilt Hospital in Nashville but I'm not sure about in your area. I hope you can get some relief soon.

 

[Procyon]

Aww, Katie. <3

I've never even heard of double-dose Remicade at so close an interval, I'm surprised that your doctor didn't suggest something else at the outset of the appointment. But it must be hard, once you've finally come to trust someone, hearing them say something so disheartening. I'm sorry.

In any case, this specialist seems to have good enough credentials. But that is one funky med school name. I looked it up, and apparently it's in Romania. :S I'd be nervous if I were you too, but try not to be. There are still a few medicine options left to think about yet.

 

[fenway1971]

He said "well I know a bowel disease specialist" ...
I guess I'm just nervous.

WHAT??? Isn't a GI supposed to be a specialist? Well, he couldv'e told you that YESTERDAY! (sorry, it's a favorite Adam Sandler quote).

Get yourself an expert. No need messing around with someone experimenting with your health. I'd hold off on more Remicade until you consult with an expert.

 

[My Butt Hurts]

Can't hurt to get a second opinion I guess.
It might be a good thing if your specialist recommends someone even "more special".
(Yup - that made me think of the short bus, but you know what I mean.)
If you see 10 people, then you get 10 opinions. I think it's a good thing.
Good luck!

 

[kello82]

ditto what the others said, my dear.
when the dr is confused by you, then it is time to seek other opinions! im sorry youre in that position though, to be the patient that the dr "doesnt know" with. it sucks, a hard place to be.
this new person sounds reallly qualified so thats great. and if hes in a bigger more popular hospital, then taht means more patients, and that means more experience that he has had. i think thats a really good thing to look for in a doc.
i really hope theyve got some good ideas for you.

hey have you done any combo meds yet? i just remembered to mention that the double doses of remi wasnt doing it for me either, it was only when we tossed methotrex into the mix that did the trick for my time!
look into stuff like that too, who knows??

 

[katiesue1506]

Yeah I guess thats the difference between my current doctor and the one I'm going to go see; mine is more of an internist... he does surgeries and colonoscopies but he is an internist, this new guy specialized in bowel diseases and mostly Crohn's from what I've read.

Pen: we are continuing the Remicade because it does still work, just only for four weeks... and after it wears off I get bad quick... it takes maybe about 5 days before I stop eating all together and start dropping pounds... my current doc said basically he's trying to minimize the time my body spends in inflammation mode.

Kello: I haven't tried any combo meds... they scare me. I just kinda want my immune system back. I fear things like skin cancer and breast/ovarian cancer without it.... even though I get my screenings... it scares me. I found out about 4 weeks ago that I'm high risk for cervical cancer.

MBH: Yeah I agree... more opinions are definitely better. I'm sure this first appointment will mostly be aqcuaiting ourselves and him reading over my past... I'm also pretty sure he will want me to get a colonoscopy since I haven't had one since Oct 2006 when I was diagnosed. At least its the summer now and the only thing I have to worry about is asking for days off to go see this guy... instead of trying to schedule around classes and work.

On the happy side.... my cat just ran into the wall.

 

[kello82]

bah as if you need more disease worries to deal with.
yeah lack of immune system is kinda scary. i dont blame you for not wanting to be on 2 of the drugs. i dont remember any problems--not really like i caught viruses or anything extra often but who knows

haha cat ran into the wall, lol

 

[mamma_jodi]

Well I can say that I have been on every thing under the sun. I did notice how ever when I was trying to get pregnant and taken prenatal vit and folic acid that my problem pretty much went away. Every thing that is but the pain when pressure is applied. After I had her it started back because of stress from labor, so I went to doctor back on predisone I went.... try losing pregnancy weight on that stuff don't work. Started tapering off and get bad again talked to doc told me to up dose again:ymad: Yea I didn't listen I went back to the vit. and folic acid which helped. I have a server case that has never went in to remission. This stuff helped alot, but now I am taken something from GNC that is really working wonders its called AciaBlast from Garden Greens. I am sure you have all seen this Acia Berry on the internet as a weight loss pill for $80. Well this is like $24 and it has really helped my crohn's I also have lost 10 pounds in about 2 months. I know its not much but I got it mainly for the crohn's. After about two weeks of taken it I had my first soild bm in over a month. Now when i start felling better I tend to not eat like I should so every once in a while I have some bad bm but for the most part has helped.

 

[katiesue1506]

There is one option I'm NOT willing to try... and that's getting preggers... LOL!

 

[Mark33180]

HAHAHAHA well.... i hope you don't have to go the last resort option.... but you could always come see the docs here in Baton Rouge. got some Really good ones. several ahve been listed in top doctors of the nation.

 

[kello82]

lol mark do you doctors pay you to attract new patients? did they tell you to pretend you have crohns and get on the internet and tell evryone how great they are??
help, hes a spammer!

 

[katiesue1506]

I think he just wants us to come see him!

 

[kello82]

awww how nice

PARTY AT MARKS PLACE!!!