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Newbie, question about good days and bad?

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Crohn's Disease
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Posted 6/26/2010 8:51 PM (GMT 0)
I am really new to this disease. Trying to learn all I can. I was only diagnosed May 25. I have also been dx with RA. I have not even started researching that one.

I have two "ulcers" one in the colon and one in the terminal ilium. The terminal ilium is what has caused the most pain since this started.

I am being really careful about food... eating "safe foods" experimenting a little here and there, but honestly a little afraid to over do.

I am weaning off Pred... at 15 MGs right now, taking Pentassa, and Bentyl. As well as a lot of supplementation ordered by GI and Rhuemie.

I am noticing the pain creeping back into the right side... Friday, a little,... today, a little more, definitely affecting my ability today to accomplish the things I want to do.

I am a proactive patient and will definitely call my GI on Monday to report, as I am supposed to wean down to 10 MG of pred tomorrow. The GI had told me her goal was NO PAIN. I don't take anything for pain currently, I don't think it warrants pain meds yet-- but it is creeping. No D-- No other symptoms.

Do you have "good days" and "bad days"...? I guess it depends on the individual, I was under the impression that once the "ulcers" healed, I would feel better, stick to a diet and I would be able to have more good days then bad?

Kim in FL
(Who had a lot planned today---- and is obviously not going to get it done.)
Posted 6/26/2010 11:28 PM (GMT 0)
Hi Kim. I am so glad that you found us! I am sorry that you are not feeling well and have to deal with this disease. I am newly diagnosed also on February 25th but you very quickly learn a lot about this disease and alot of my knowledge came from this board. I am still having good and what I will call so so days. But more good than bad. I am currently on Entocort and Lialda. They tried to ween me from 9mg of entocort to 6mg and my symptoms also came creeping back in. I am back up to 9 mg for the time being. What I will tell you from my experince is I go by if my pain or symptoms seem to be long term. For example I still have bouts of cramping from time to time but when it goes away I feel fine again. When I tried weening and my symptoms got progressively worse I knew it was time to call the dr and see what I needed to do. You will begin to learn with this disease what is 'normal' for you and when it is not normal check with your doctor. 

This forum has lots of knowledgeable people who have been dealing with this for a very long time. The weekends here are a little slower but I am sure some more people will be along to offer some more advice.

Posted 6/27/2010 1:03 AM (GMT 0)
Thanks tew cute...

Yes- I think you are correct, I will learn what my body has to say. I already know, I am not weaning the pred tomorrow, if the pain is creeping up. I will wait until Monday and speak to the doc or PA. I know they will return my call--- and i was just telling a friend, how much I have learned from this board... but how I have to limit my use on it, to "take in" the info and then go back for more.

You re assured me....

Kim in FL

Posted 6/27/2010 1:16 AM (GMT 0)
Kim just fyi sometimes you can have a bad day or two when you go down on the Pred. I have had that happen many times. Glad you are calling the doc, it may be a good idea not to go down just yet on your Pred, and wean down a little slower. Hugs~
Posted 6/27/2010 2:16 AM (GMT 0)
stmprkb

Hi, I'm sorry for what you are going through but it is eerily similar to mine. No pred here though, Entocort and Lialda for now. The message boards have helped understand this disease, realize there is much to be thankful for and adjust to a new way of life. Take care, Barb
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