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Crohn's Disease
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Posted 4/18/2015 10:04 PM (GMT 0)
Hello all! I was diagnosed with Crohns in 2000, was on Asacol for years until I had to switch to Deilzicol??? because of the patent or whatever the issue was. Anyway, I was great, had a few pains here and there but for the most part was fine. Well now the last few months I've been having different pains, a pretty constant dull pain on the right side around the ribs and sometimes goes to the back in the same area. It's very different from my original pain which was around the belly button and it would last for about a minute and would ease up but this pain is more constant and def not in the same area. Weird!!! Dr ordered a CT scan and bloodwork for inflammation and bloodwork showed nothing and CT scan just showed some thicken in a 5.5 cm section, the nurse said that just means I have Crohns. Dr put me on Entocort, I guess he thinks theres inflammation going on. I've been on Entocort now for a little over 2 weeks and no real improvement. Is it possible that it could take longer??? I've talked to nurse this past week about it and now he wants me on PREDNISONE!!!! I am super scared to be on that, and he knows I'm against it but........ I'm also getting an ultrasound of the gallbladder done because i'm wondering if its not that. I would prefer it be the gallbladder:) but more than likely its not. I'm not having a diarrhea or blood or any others typical Crohns symptoms so I guess that's way I'm hoping its the gallbladder. I've never had a bad case, mine has always been pretty mild. Is there anyone out there know about the Entocort or maybe have a positive case with the dreaded Prednisone? I've read you have to outweigh the pros and cons of it, so if I do infact have inflammation somewhere and I don't take Prednisone, does my intestines just keep thickening or what???
Posted 4/19/2015 1:12 AM (GMT 0)
Hi and welcome to HW. Where was the 5.5 cm thickening? I don’t think that the right upper side has to do w Crohn's but wait and see the results of the ultrasound.
I have been on Entocort for more than 3 years now. This medicine needs like a month or a month and a half for you to start feeling its effect.
As for pred, it's a life saver provided your doctor starts you off on it w a plan of a quick taper. Still, both Entocort and pred are not long term treatments. Your GI has to consider another plan since the thickening means you need something stronger other than mesalazine. The options out there could be Imuran, 6mp, methotrexate or even biologics.
Keep us posted of the results of the ultrasound.
Good luck :)
Posted 4/19/2015 1:33 AM (GMT 0)
Thanks so much for a reply. Here is what my scan results said. IMPRESSION:
There is a 5.5 cm in length segment of the distal small bowel demonstrating wall thickening and luminal narrowing. This could be due to underdistention. However, this is suspected to represent chronic changes of Crohn's disease, without acute inflammatory changes. Clinical correlation recommended.
Posted 4/19/2015 2:32 AM (GMT 0)
It sounds like it's not acutely inflamed but may represent scar tissue, but I'm not a doc, so it's best to check with your GI. If it is scar tissue, then entocort or Pred is not going to help. My understanding is that each time you have a flare with inflammation, you get a little more scar tissue as it it heals, which in turn causes your bowel walls to thicken. It can take many years of slow, chronic inflammation until it eventually causes a stricture or obstruction. The idea behind the immuno-suppressive meds is to try to stop that from happening. Have you had a colonoscopy where your doc tried to get biopsies and reach your ileum? You can possibly try Prednisone to see if it stops your symptoms, but if it doesn't help, it really makes me wonder if your symptoms are not from active Crohn's. If you are hesitant to start Prednisone (and I don't blame you) then maybe get a second opinion from another GI. Since you have narrowing, I also think you should consider a low residue diet...avoid uncooked veggies like broccoli, carrots, and salad and hard to digest fruits like apples. You can go on www.ccfa.org website for all sorts of info about diet info, disease process and medications.
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