Crohn's or infection?

[Katrina77]

Hi everyone! I've posted here a few times, and I just love your support and understanding!

Last year I was almost diagnosed with Crohn's, and took entocort which really helped me. When I was on it I felt absolutely great, and when I got off all the symptoms came back with a negative colonoscopy and healed ulcers. After which I got my appendix removed, which turned out to be acute appendicitis and the docs thought the pain and the diarrhea was just coming from the appendicitis. Two weeks after the surgery I got hospitalized again with C-Diff colitis, and I was resistant to three treatments of antibiotics so I underwent a fecal transplant in October 2016. The fecal transplant really helped me! I was doing well for about 6 months, occasional stomach cramps/discomfort/diarrhea/bloating, but overall it was Post infectious ibs and it was manageable. Then in March 2017 I started having fevers and joint pain and got diagnosed with seronegative Rheumatoid Arthritis. It was very severe that I was on Medrol 24 Mg (substitute for prednisone) and Humira. The Medrol has been really helpful but Humira not so much yet. My joints have been doing much better, but I started having fevers again, diarrhea, really bad cramps, nausea and horrible rectal pain. I thought the C-Diff was coming back, but that came out negative. The docs don't think it's Crohn's cause otherwise the Medrol and Humira would help it. So I'm just so confused and tired trying to figure out what it is. The pain gets worse and worse every day. I honestly just suck it up and try not to think about it. But sometimes it just gets unbearable. Waiting to see an infectious disease doctor in the end of August but so far my tests have been fine except for a very high white blood cell count and neutrophil count and also a very low lymphocyte count. The docs are saying it's cause of the steroid so I really don't know what to think. I'm very tired of not knowing what's wrong with me and being in so much pain.

 

[ronroush7]

Maybe you need to try another biologic.

 

[Katrina77]

Maybe you need to try another biologic.

I've been on Humira only for a month and a half, and the docs are saying I should wait at least for 2-3 months. The steroid really helped my joints but I continued to have diarrhea, abdominal and rectal pain. Do you think I could still have a Crohn's flare with such a high dose of a steroid?

Also what biological have you tried? Has it worked for you? And have you experienced any side effects?

Thanks a lot for your help!

 

[ronroush7]

Everyone is different. Cimzia was the most successful but it eventually wore off. I went on remicade but made the mistake of taking myself off because of the expense. I had a flare and when they tried to put me back on i had developed antibodies. Stelara and Humira both didnt help with the Crohn's disease. I think the Humira helped some with psoriasis. They are trying to switch me from eight weeks to four on Entyvio. I agree with your doctor about giving the current biologic more time to work. I hope you get relief soon.

 

[Maya142]

Humira can take a while to kick in. You generally do need to wait at least 3 months. Have they done Humira levels to see if they are low? Some people need Humira weekly. It took my daughter 6 months after we had moved Humira to weekly and added Methotrexate. Then it worked like magic!

It could be that you need a different biologic but I think it's probably too early to tell.

My daughter had CDiff this winter and it led to a flare that took 6 months to control (and LOTS of steroids). It sometimes just takes time - I know it is SO hard to be patient when you feel awful.

She has now been on Cimzia (a different anti-TNF) for 3 months and her Crohn's is much, much better.

Have you had blood work done recently? To check for inflammatory markers (ESR, CRP)? Or Fecal Calprotectin? That's a stool test which will tell you if there is inflammation in your gut. It is much more specific than ESR/CRP. If it's high, then you'll know it's Crohns and not IBS.

It is possible that you need a higher dose of steroids to control the Crohn's (if that's what is causing your symptoms). Are you still on 24 mg of Medrol? That's about the same as 30 mg of Prednisone. Sometimes people need higher doses - 40 mg is pretty standard for a bad flare.

The high WBC is common with steroids.

Hang in there!!