Flare with a "normal" CT results = frustration

[Fleurstitches]

I was first diagnosed with Crohn's in 1995 (my Dad had Crohn's too)... I spent 8 years trying to manage my disease and a fistula surgery, Remicade, 6-mp, prednizone etc. etc.. then was in remission for almost 10 years. So I started to have symptoms slowly about a month ago that progressed each week to more pain in side, etc. Finally got past my denial and with to my gastro this week- they called this morning and said my CT Scan came back normal. I was so frustrated to hear this - while "normal" is good, I know that my Crohn's is flaring and the Entocort they put me on has helped to reduce the symptoms by half. But now I've wasted $1200 in co-insurance/copay and will probably still have to do a colonoscopy. My disease was caught early when I first showed symptoms and managed fairly well with only one stricture and more issues from the fistula surgery and healing. So I don't think I have a lot of inflammation this early for them to see and I just feel discouraged to think they might not believe me and wait to start Remicade. It is frustrating enough to feel like heck and know that the disease is active again.

Has anyone else had a flare with negative CT scan?

 

[Cindym]

We believe our 19 year old daughter is flaring right now, but her bloodwork has come back normal as well as her CT scan. It's very frustrating because she feels horrible. She is having an Upper GI barium test next week.

 

[iriechic]

I had an MRE (useful like a CT or MRI) last year that was pretty normal, no pathology of crohn's, but I was definitely flaring. I do understand! My GI suspected the MRE would reveal crohn's but it didn't. I have microscopic colitis which cannot be seen with the naked eye, like crohn's and UC can. Have you had a colonoscopy with lots of biopsies to test for MC? I'd suggest at least four biopsies from different areas (ascending colon, descending colon, rectum, terminal ileum) because MC can be tricky to find...pretty sure crohn's is similar? Probably the last thing you want to do if flaring is have a colonoscopy but maybe it could be useful if you haven't had one in a while. Definitely keep on your doctor's case if your symptoms persist. Better to keep them constantly in the know than not. Best wishes from a former NC resident (Asheville).

 

[DustyKat]

My daughter had a normal CT Scan one week out from emergency surgery for a ruptured bowel. She was undiagnosed at the time and the mess they found when they went in surely didn't happen in a week. Her Crohn's is in her ileum.

I hope you get answers soon that match what you are feeling. :ghug:

Dusty. xxx

 

[Cindym]

Thanks for the info! She had the barium swallow test today and it came back normal like we thought it would. She will definitely be having a colonoscopy soon. Sees her doc again tomorrow. She was diagnosed when she was 9. I believe her crohns is in the ileum as well. Had a resection 2 years ago and 3 months later was back in the hospital
Hoping to get her feeling well soon! It's very hard to see your family member suffer so much!