Anyone on here also suffering with Crohn's disease/IBD? Prescribed steroids or biologics?
I was formally diagnosed with CFS only in May but it started in July 2022 for me. Timeframe for diagnosis and to find someone who will actually listen and believe you is a b**ch!!
I was making making some headway with a CFS OT and properly pacing by April this year, and then I began to get extreme diarrhoea (way worse than my normal IBS). thought it was a stomach virus or food poisoning but kept returning. I'd have 5-6 days of really bad pains and bowel issues, followed by a couple of ok days, and I'd think it was all over...but it would return again and worse than before.
This went on for 8 weeks before I was rushed to hospital. I spent 10 days there isolated, as not only was I diagnosed with Crohn's disease but I was infected with C Diff too. They put me on IV steroids for the Crohn's.
What I didn't expect is that the steroids would have some major benefits on CFS! Unfortunately, this was only initially and I'm now in the most extreme push crash cycle I've ever experienced. I already had POTS before but Im experiencing sinus tachycardia on steroids now.
I'm only partially responding to steroids and every time I drop the dose my symptoms return immediately, so I'm going to be starting on Biologicals in 2 weeks (Infliximab). I'm just wondering if there's anyone else suffering with CFS that also has Crohn's or IBD of any kind?
If so, what were your experiences with steroids and biologicalsif any? Did they also help the CFS?