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Does it get better?


Thu, April 16, 2009 12:00 AM

Question, I should probably be talking to this with my doctor and I will but question for those of you who deal with it, I've been on intense treatments for well almost a year and a half, and I have waves of feeling better but overall I havn't made progress. I'm honestly on the best medications that are out their for Crohn's....why am I not getting better?

Is this how I am gonna be forever?

 

FPO rachj
Joined Jun 2, 2008

Fri, April 24, 2009 12:00 AM

 Reply posted for rachj.

Hey actually i just had an appointment with my doctor, and get this it has official been declared that my disease fits into no catagories and is extremely resistant- and my doc has hardly ever seen a case quiet like mine. He is part of the GI team that has been rated 7th in the nation, so yea I guess I will be starting more very intense and dangerous treatments cause I guess I wasn't crazy I'm not suppose to feel like this. Wish me luck! I gotta decide what plan I go with cause they all have benefits but the more beneficial it is the more severe risks it has....

Keep on keepin on.

FPO rachj
Joined Jun 2, 2008

Fri, April 24, 2009 12:00 AM

 Reply posted for rachj.

I really hope that it does get better for you very soon. I've been in a complete mess for 8 months now, despite taking steroids, anti - inflammatories & anti - spasmodics. The consultant describes what I have as a 'mild' case but he isn't living it, day in, day out. Maybe if he could experience it for a day or two he'd have a little more empathy. I'm starting to believe that the medics just do not know how to get this thing into remission. Hope you get there soon. x

FPO marzipan
Joined Feb 16, 2009

Thu, April 16, 2009 7:49 PM

 Reply posted for rachj.

Oh I hope we all will feel better.  I think it might be a really good idea to talk to your dr or get a 2nd opinion and try something else.  It is so hard to see that light at the end of the tunnel- but my dr keeps saying that most of his patients -once they find the right mix- literally only see him once or twice a year to check up and possibly tweak meds.  I am really hoping I am one of the "most"- I hope you are too- as with all of us!

FPO asohn
Joined Dec 22, 2008

Thu, April 16, 2009 4:55 PM

 Reply posted for rachj.

thank you for the comments, I actually do a very strict diet and nutrition I eat very select foods and am very concious of what I eat and I keep track of it. I get sick when I eat good or when I eat bad, in fact I get sick even when I dont eat. I get 8 hours of sleep a night. I have learned ways to lessen stress and my teachers are helpful so my stress honestly only comes from my disease, and even that is normal stress level. I have made almost 0 improvement since my diagnosis over a year ago.

I guess thats just what it is, I mean its a medical fact not really an emotional thing in my mind right now so I'm asking because I'm wondering what approach my doctor and I will take next. I think we are going to start test for other things, or re-try different treatments because progress would be good :)

FPO rachj
Joined Jun 2, 2008

Thu, April 16, 2009 12:00 AM

 Reply posted for rachj.

I see no reason to believe you will necessarily feel this way forever. Chron's can go into remission with only occasional flare-ups. While it's not "curable", how you feel on a daily basis can be greatly affected by what you eat, and your emotional state. Have you tried keeping a food diary to see which foods are the most irritating?  I have worked with a Chinese doctor on diet and herbs since having a surgery 20 years ago, and I have felt much better since. While there is frequent moderate trouble, I practically never have severe cramping.  Throughout this community website some people have shared their experiences with ways to feel better. I hope things get better for you!

FPO ebko
Joined Mar 12, 2009

Thu, April 16, 2009 12:00 AM

 Reply posted for rachj.

Medications only suppress the problems.  They do not heal or cure you.

FPO patman75
Joined Feb 8, 2009

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