- Joined
- Nov 2, 2018
- Messages
- 20
Hello,
My name's Elise. I'm new to the forum - well, sort of - you can say I've lurked these forums for a long time, but this is the first time I made an account and started posting.
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, too many salads, 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 most right 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 pain. It's been so bad I went to ER and often avoid food entirely.
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. :frown:
My name's Elise. I'm new to the forum - well, sort of - you can say I've lurked these forums for a long time, but this is the first time I made an account and started posting.
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, too many salads, 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 most right 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 pain. It's been so bad I went to ER and often avoid food entirely.
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. :frown:
