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Is it all in my head

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Paula85

I was diagnosed with Crohns disease 5 years ago, I went through all the tablet forms of medication and this couldn’t get it under control. Have been on infliximab for 4 years and this seemed to work. Nearly 2 years ago I started getting lots of pain, more just after eating. They thought I needed a bowel resection. I went in to have this done but when they opened me up they couldn’t see a norrowing etc so didn’t end up removing anything. Since this I still get pain daily, sometimes to the point where I cannot more. Some days my BM are worse that others and have very low energy levels. By bloods don’t show that I’m having a flare. Anyone have any idea what this could be?
 
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DJW

DJW

Forum Monitor
Hi and welcome.

Have you had your iron, B12, Vit D checked. A deficiency in any of those areas can cause low energy.
 
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Paula85

Thank you. I have to have my bloods done every time I have my infliximab and I think I they check this, I have an appointment with my consultant in January. I will double check
 
DJW

DJW

Forum Monitor
I regularly battle fatigue. It lays my out.

How long have you been on infliximab?

I started in September and am really hoping it takes care of my fatigue.
 
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Paula85

Infliximab was great for me, have been on it for over 4 years. Was symptom free for 3 years. Hope it gives you more energy
 
kristihelene

kristihelene

Paula - I am in a similar boat. My small bowel follow through or pill camera endoscopes will show no narrowing, yet I have symptoms of strictures. Have you ever had surgery before? If so, it could be adhesions causing temporary "kinks" that make the sharp pain come and go. Those can be removed with laparoscopy, but inevitably come back. If you haven't had surgery, I'll share a fact my GI shared recently. He is top of top in Crohn's research and clinical trials. Recently, a nationwide study found that OVER 50% of Crohn's patience who are in "endoscopic remission" (meaning no visual evidence of new disease) still present with active disease symptoms (pain, fatigue, etc). OVER 50%! So NO, it is absolutely NOT all in your head! They just don't know WHY! But you are certainly not alone!! I have had periods of "endoscopic remission" with Remicade but have never ever ever been even close to symptom free.
 
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Paula85

Thank you for the reply it's really nice to know I'm not the only one out there feeling like this, I really was thinking it was in my head. No apart from the surgery I mentioned I haven't had any before that. I had a pill endoscopy a week ago so will see what that shows! I'm hoping I can get this sorted out so can start to feel a bit more normal :) hope you also start to feel better
 
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