I’ve often pondered the term ‘Warriors” when used in the context of IBD, there’s loads of Facebook groups with titles like IBD warriors support and awareness, Stelara Warriors, Entyvio warriors, you can even buy branded IBD warrior gifts!
If I’m honest, I have been a little glib when it comes to declaring I am an IBD warrior, on reflection that’s because I’ve not had a serious flare for the last ten years, as I have been managing my CD with a combination of Meds and diet.
However, the warrior term becomes center stage when faced with the medication options. We IBD veterans have to battle through it, focusing on the end game and being ready for collateral damage along the way.
After a flare up in August this year, my IBD Nurse got back to me and prescribed me a course of Entocort. Within two weeks I had the flare under control, and was feeling back to normal; I do have to caveat the “back to normal” with actually feeling like rubbish all day, but I’ll take that over being in pain!
The challenge comes when faced with the decisions we are forced to make, for me this comes with the plan from my consultant.
Here’s the plan…. it’s not a very cunning plan, and in fact it’s the same plan from when I was first diagnosed in 1992. It’s basically, Steroids to get the disease under control and then move on to biologic for long-term control of the disease.
Unfortunately, this plan is flawed, first of all when I reduce from 9 mg of Entocort daily to 6 mg, I can feel all the symptoms coming back: nausea, bloating, pain, and increase BMs. Secondly, the biologic of choice is Stelara which can take up to 12 weeks to begin working (if it works at all). This leaves me with at least eight weeks with neither the steroids nor the biologic offering me any protection. This makes me question the “plan”
The outcome of the plan, if I get on board with it, could lead me to being admitted to hospital, which considering the current status of COVID, I’d prefer not to be anywhere near a hospital. The other side of the coin is that I continue on steroids until the Stelara begins to work, the challenge is being immune suppressed with COVID still present.
My decision would be to continue with steroids until this medication kicks in, you have to take your chances with the long term effects of the steroids. My concern is right here, right now, and the reality of having that conversation in Covid times when I haven’t seen my consultant for almost 2 years seems unlikely.
I find it difficult to believe that there isn’t a better plan to manage the disease in between medications; it appears nothing has changed in the 30 years since my diagnosis. It’s ludicrous that the NHS would spend £20K a year per patient on as an example, Stelara, but not consider a transition plan, from one medication to another.
As my disease is now actually older than my consultant (for reference he is a fantastic consultant) I will be pursuing the route that for now keeps me safely away from the hospital ward.
I do feel fortunate as I have access to IBDoc, which gives me the tools to report the level of inflammation directly to my consultant, for readers new to my blog, Calprotectin is a protein biomarker that is present in the faeces when intestinal inflammation occurs. Faecal calprotectin testing is helping to improve patient care. It prevents the need for unnecessary endoscopy procedures.
Please get in touch if you’re like me and are in between medications, I’d love to hear your stories.
https://ibdocandme1.blogspot.com/
https://www.calprotectin.co.uk/