• Welcome to Crohn's Forum, a support group for people with all forms of IBD. While this community is not a substitute for doctor's advice and we cannot treat or diagnose, we find being able to communicate with others who have IBD is invaluable as we navigate our struggles and celebrate our successes. We invite you to join us.

Crohns, Remicade stopped working. Depression..

Hello, My name is B and I'm 20. I'm looking for help. I'm desperate and I dont know where to turn. I'm active duty military, been stationed in Louisiana for 2 years. I've been very healthy my whole life, never been to the ER until this year. After moving here I've had nothing but issues. In August I was diagnosed with severe crohns disease after a perianal abscess developed and was lanced. Doctors said the abscess was benign and wouldn't happen again, but after further diagnosis they concluded it was crohns. I was promptly put on Remicade, doing the Top down method, max dosage tapering off when symptoms improve. So far I havent heem tapered. I was getting infusions every 8 weeks, and then they downed it to every 6 weeks. My perianal abscess is still present, after a year. It closed up for about 6 months, and then recently swelled up and got infected warranting a trip to the ER. Today, I got a colonoscopy and the news was delivered I have another abscess developing and my remicade levels are low. I get extremely sick and depressed after infusions. I dont have stomach cramps, I use the bathroom normally twice a day with no diarrheah. I've been gaining weight again. I just dont understand what's going on. My doctors are recommending a increase In dosage, A round of MRIs,and say remicade is the only option aside from surgery. The only pain I've had is this fistula. When it heals, my quality of life is amazing. It's literally the only thing that causes me issues! Last time it came back I was put on prednisone which cleared it up in three days. The month I was on that was the beat I ever felt prior to the abscess. I also have horrible acne that started with this diagnosis as well. I'm just confused. Has anyone had any experience like this? Im tired of missing work, I want to provide for my Fiance and I want to start a life. Not spend weeks on end in the hospital.


Well-known member
San Diego
I applaud your doctors for taking an aggressive top down approach to treating your Crohn's. Based on the low levels of Remicade in your blood on an 8-week schedule you may have developed antibodies to the Remicade molecule, causing it to lose effectiveness. The usual first step in this case is usually what they call "dose intensification," i.e. give more drug and/or more often - hence, your 6-week regimen.

So far so good, but the problem hasn't gone away. So the usual next thing would be to either give even more Remicade or switch to another biologic.

What is don't understand is your statement said that MRI shows that it is Remicade or surgery. No other options. There are in fact 7 biologic drugs that are approved for treating IBD. Four of them including Remicade are anti-TNFs - which have the most data and experience in fistula closure and healing. So if Remicade is losing it's effect there are Humira, Simponi, and others to try beyond Remicade. Talk to your doctor about switching to Humira.

And beyond the anti-TNFs there are even newer biologics such as Entyvio and Stelara that are beginning to show promise for treating fistulae. For example here is some recent research on Entyvio (vedolizumab) showing good results:


So I suggest you talk to your doc about next steps short of surgery. It seems to me you really haven't fully explored the biologic options available.