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Posted 5/22/2014 12:38 AM (GMT 0)
Hi. Son just dx and wending off 40mg. prednisone which doesn't even help the pain!! I can't believe it. He's been on for a week and started delzacol. He wants to get off that also, but I'm afraid he's going to need some medication.

Nothing seems to be helping his swirling painful gut and we need advice. 4 hospital visits, 3 doctors, biopsies, and no help yet.

At a loss.......any advice??
Posted 5/22/2014 1:22 AM (GMT 0)
Welcome to the forum,

You'll find alot of support and advice here. First though, you'll need to provide some more information.

How old is your son? How long has he had Crohn's symptoms? Has he had any diagnostics done, and if so which tests?

If he's still on 40mgs of Prednisone, then he's pretty much just started it. He'll be weaning off for about 8-9 weeks. He should start feeling better very soon, but it sometimes takes a couple of weeks. Make sure you stick to the descending dose schedule strictly. You can't just stop taking this drug.

At this point along with the Prednisone, I would only recommend you follow a low residue diet, and stay away from avoidance foods. Your GI should provide you with the information you need.
Posted 5/22/2014 4:03 AM (GMT 0)
Thank you for your help. Evan is 25. First colonoscopy showed colitis at 17. Managed pretty well until a few months ago. Lots of pain, rumbling not sleeping well. Another colonoscopy 1 month ago, biopsy showed crohns. Inflammation looked mild but still has pain. A few trips to ER with cat scans, blood, urine all look normal.?? He's on the SCD diet the pred, and dezicol. Also taking LDN. Not much improvement except diarrhea is better just has urgency feeling. I know about the taper off pred and quite worried about the drugs effects on the body!!
Thanks for any suggestions you may have.
I just want to help this boy. He's starting to loose himself!
His mom
Posted 5/22/2014 9:22 AM (GMT 0)
How have his symptoms been since first diagnosed at 17?

There are many first diagnosed with Colitis, later to be changed to Crohn's. If he's managed his symptoms well without maintenance meds, then it's a good sign.

I don't have any experience with LDN. If that's not controlling the disease at this point though, then maybe it's time for something stronger.

You'll have to discuss these options with your GI. 6MP/Imuran might be a good try at this point.
Posted 5/22/2014 4:55 PM (GMT 0)
I went through that 2 years ago, where I was in so much pain and NOTHING helped! NSAIDS (ib profen, advil etc.) aren't recommended because they can cause more tummy issues. I would double over in pain and try to go to work and just have to do breathing techniques to get through the day. It was like labor pain! Very intense, short bursts of extreme pain that would come and go. Mine was because I had a stricture.

The dr was never able to give me anything that helped. I was on prednisone and they started me on 6mp (which can take up to 3 months to start working). I was hating life and miserable. It took about 6 months of this intense flare, but then .... the pain stopped. The meds started working and I felt like myself again!

Working out and yoga really helped me! Learning breathing techniques and certain stretches can really help! Warm baths too!! The pain can be intense, if the dr doesn't say there is a blockage or anything. If the pain doesn't subside, you'll get to know the GI dr's office very well. :) Good luck!
Posted 5/23/2014 12:30 PM (GMT 0)
Have you ever thought about changing his diet?  Read the book "breaking the vicious cycle" which talks about how diet and what you eat play a big role in Crohns
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