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Confused About Symptoms & Test Results


Fri, November 02, 2018 9:09 PM

Hello,
 
My name's Elise. I'm new to the forum.
 
I've had Crohn's Disease for 5 years. I was diagnosed in my early 20s. I also have Celiac Disease, which I was diagnosed with 16 years ago.
 
I've been on a strict gluten free diet ever since I was diagnosed with Celiac, and I avoid spicy foods, salads, popcorn, nuts, too much pizza, and high fiber foods with Crohn's. 
 
When I was first diagnosed with Crohn's, I was put on Entocort which did nothing for me. Then I tried 80 mg of prednisone along with 50mg Imuran. I got better, but not well enough, and was then switched to Remicade.
 
I've been on Remicade for several years now. Sometimes I notice symptoms come back when I'm due for it. Since this summer...I've noticed my symptoms come back only two or three weeks after getting Remicade. With my last dose of Remicade, I noticed barely any improvement at all.
 
What's weird is that I'm not experiencing diarrhea (when I was first diagnosed, I did experience that), but instead constipation at times. Mostly, what I experience now is debilitating fatigue, bad night sweats, and awful pain... it can feel like someone is squeezing and twisting my insides. Usually the intense pain lasts for several minutes, and comes back in waves... and the dull pain is near constant throughout the day.
 
I saw my GI about all this. He did an MRI which showed thickening in the terminal ileum (>5cm). My CRP in my blood tests isn't elevated, and my fecal CRP came back at 105... which my GI says isn't a significant elevation. He wants to still do a colonoscopy and endoscopy in a couple weeks to get a better idea as to why I'm experiencing these symptoms. It's been so bad I went to ER and often avoid food entirely. Food makes me very anxious.
 
I'm wondering if anyone else has experienced this? Could that thickening be scar tissue rather than inflammation and still cause pain? I'm so confused and I just want answers so I can feel better. My doc says we'll maybe move me to Stelara if something comes up on the colonoscopy.
 
If anyone is able to offer their thoughts...I would appreciate it so much. I'm trying not to lose my mind because this disease is so confusing.
 

FPO Whisperings
Joined Nov 2, 2018

Thu, December 27, 2018 2:37 PM

Reply posted for Kathy.

Hi Elise,
You mentioned thickening of the terminal wall.  I was diagnoised in 1995 and had a bowel resection in that area with the ileum removed.  I was OK for 22 years, then it all came back.  The area that was causing all the pain was lots of scar tissue from my first resection.  The area was 4 inches long and as thick as my finger.  So food was not getting through.  My Dr put me on Humira, prednisone, and Imuran without any relief.  After many CT scans, a small bowel series and another colonoscopy, he decided that to give me any relief that he had to remove that section again and thank the Lord, I was able to get reconnected.  That has fixed all the pain that I had, but now lots of diarrhea and gas are left.  I am still on Humira and recently had another colonoscopy with no inflamation showing.  The Dr said to try Imodium for my diarrhea.  So I am thinking that the thickening you mentioned could also be the cause of food not getting through a small area.  Please feel better and good luck with anything you and your Dr decide to do.

FPO Kathy
Joined Dec 13, 2018

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