Recently Diagnosed. Looking for advice :)

[urabus416]

Hello, my name is Brandon. I was recently diagnosed with Crohn's Disease is late November 2010. I was started on Asacol and that had no effect and am still taking 3 pills 3 times a day. Also tried Predisone. 20MG seemed like it was helping, but didn't alleviate all the pain, pressure and uncomfortable feelings in my gut area. Since it didn't completely work, my doctor started me on 6-MP 50MG. Am tapering off Predisone over 8 weeks. Am at 12.5MG/day and since starting the taper have felt like I have taken a couple steps back. I guess I'm just looking for advice from anyone who is willing to lend a minute of their time

I have also been having to get blood drawn from time to time to monitor my blood counts to make sure the 6-MP isn't having any negative effects. At my last appointment, the nurse who drew the blood had looked at my "profile" and came to me and asked me some routine questions, "How are you feeling? Are you feeling any better since starting" etc... After telling her I'm unfortunately not feeling much better, she lent me some advice about another possible avenue to travel down. It was cutting gluten out of my diet for at least a month to see how it effected me. I guess I'm just curious if anyone has any advice on what I should do.

My other question is to see if there is any way to fight this disease without taking prescription medication?

Thank you to anyone who lends the time to help. I really appreciate it

 

[Rebecca85]

Hi Brandon, welcome to the forum. 20mg is quite a low dose of Pred, the usual starting dose is 40mg. As for the 6mp, that can take quite a while to kick in (somewhere in the region of 8-12 weeks). So there's still chance for that to work. As for cutting gluten out, caeliac and Crohn's appear to be related, there are people around who have problems with wheat, so I guess it's worth a shot. I haven't tried going gluten free myself, I kept a food diary which showed bread and pasta as two safe foods, so I don't think it's particularly an issue for me. Finally, some people seem to have success remaining in remission med free, however there are few stories of people going into remission without meds (and I would take those stories with a pinch of salt!). And if people who are med free do have a flare up, the consequences seem to be worse than if they had taken meds. So stopping meds is not a decision to be taken lightly.

 

[Astra]

Hi Brandon
and welcome

Just to concur with Rebecca with the meds thing! Not a good idea.
If you're still in pain then upping the Pred to a higher dose whilst the mercap kicks in would be a way to go.
I don't have any problem with wheat, in fact without it, I'd probably starve to death! It is my safe food too, it's veg and fruit I can't eat.
lotsa luv
Joan xxx

 

[MADiMarc]

Hi Brandon.
I have tried various food diets, including cutting out gluten. It did not work for me. I ate nothing but free range chicken, lamb and white rice and drank nothing but distiller water for one year. I am not saying your gut does not have problems with gluten, just saying it did not work for me. I also ate my weight (or so it seemed at the time) in supplements everyday. I honestly spent $700.00 a month on my supplements for over a year. I know you have to go through all of this, it seems to be a natural part of Crohn's. As far as I am concerned, you should always question why, what else can we do, etc. I hope you find a way that works for you and quickly.
Good luck,
Michele

 

[hindyg]

Were you ever placed on an antibiotic to help with the initial inflammation/infection that got you to diagnosis? You really should try some sort of food elimination diet to see what triggers you. I have found that really helped with me.

 

[Sue-2009]

6mp takes a good 3 months -- atleast for me..Don't give up on it yet...Some people posted that it took longer...Hopefully someone will chime in...I am at that point now, The other drugs are for if you have given 6mp a fair shake...Peace, Sue