Confused About Test Results

[Whisperings]

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, 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. :frown:

 

[Trysha]

Hello Eloise..welcome to the forum
Sometimes the longer the use of some crohn’s drugs the less effective they can become
It can be necessary to first find out the reasons behind what is happening so it’s really good that colonoscopy has been scheduled for you.
The GI will gain further information and be able to give you different treatment according
what is found at colonoscopy...and endoscopy.
It is a very anxious time for you and sometimes in order to gain sufficient strength you may need some food supplements .
Do you have help from a dietician....if not talk to the GI about this.
A couple of weeks seems timely enough although if it gets worse and is unbearable best go to emergency .
Feel better soon
Hugs
Trysha

 

[Maya142]

I agree - scopes are a good idea at this point. They should show whether there is active disease or if the thickening is scar tissue. It's possible that food is getting stuck and that's causing the pain after eating. I would stick with a low residue diet until scopes are done.

If they find inflammation, then it's possible you have built up antibodies to Remicade. They could either escalate the dose and see if that works, or put you on a new biologic like Stelara.

How often are your infusions? They can be done every 4 weeks if necessary - that is what my daughter needed - infusions of Remicade every 4-5 weeks.

 

[Whisperings]

I agree - scopes are a good idea at this point. They should show whether there is active disease or if the thickening is scar tissue. It's possible that food is getting stuck and that's causing the pain after eating. I would stick with a low residue diet until scopes are done.

If they find inflammation, then it's possible you have built up antibodies to Remicade. They could either escalate the dose and see if that works, or put you on a new biologic like Stelara.

How often are your infusions? They can be done every 4 weeks if necessary - that is what my daughter needed - infusions of Remicade every 4-5 weeks.

My Remicade infusions are every 7 weeks. I think there was concern over whether my insurance would cover more frequent infusions than that, but it's something to bring up with my GI again for sure.

Scar tissue is built up from recurrent inflammation, right? Can that be brought down with meds or steroids, or does scar tissue often mean surgery?

 

[Scipio]

Have you had your blood levels of Remicade measured just before one of your recent infusions? Your symptoms sound like they could be due to a loss of response to the Remicade, which is often due to developing antibodies that react with and block the effectiveness of the drug.

The scopes are a good idea, but it might also be good to measure your blood levels of Remicade and also to check for antibodies that react with it. Talk to our doctor about this. If drug levels are low and/or antibody levels are high they may choose to boost the dose you are getting - and failing that, to consider moving to a different biologic.

The thickening could be scars or it could be inflammation or both. The scopes will tell you a lot more.

 

[Jabee]

I recently switched GIs (my previous one semi-retired and relocated) and my new one ordered an MRE. As yours did, it showed damage in my terminal ileum from chronic inflammation which is not active at the moment. Like you, I experience a great deal of pain and I’ve never really had diarrhea, just constipation (the inflammation is always located in my small intestine, anywhere from my duodenum through to my ileum). I see her next month when we will discuss next steps. Hopfully your scopes will give you more information about whether it is scar tissue or inflammation that is causing the thickening.