I don’t check in here with my Crohn’s as much these days because generally I am pretty well and I manage a lot of my Crohn’s myself… but little hiccups do pop up now and then. I find writing out my issues quite good for my brain. It helps me process it all and I think it helps other people out there who have this insidious disease (and all the things that come with it!). Whatever you’re going through – you’ve got this too.
Last I wrote here was about CBD oil and that’s going strong. It’s definitely helped and changed my life. But, it’s not a cure and I have some issues I did need looking at.
I’ve had some leg swelling, knee, ankle, feet pain. It comes and goes all the time. A lot of the time I am limping. Some days my legs are very painful. I would say this is my main trouble at the moment. I know it’s because there’s something going on in my gut and it’s a response to that.
I also have moments in the day where I am so hot, in the face. Like a beetroot. I know it’s not hormonal, and it’s not every day.
I also have some new erythema nodosum spots on my calf muscles. I’ve mentioned them before here. They are horrific. Every doctor I show these to take photos. One said to me last week “you must have done something bad to deserve these, but they are very unusual.”
Now I don’t visit my doctor unless I really really have to. I stay away as much as I can. Diet, sleep, low-tox, CBD oil… all of those things mostly have kept me well since my colostomy surgery two and a half years ago.
But I had some sun spots on my face about 2 weeks ago which needed zapping. I went to my GP (who is amazing and I am very lucky to have found a good one!), and while she was zapping away I told her I’d come back next week to have some bloods done because I think there’s a bit of gut activity bubbling away. But she said nope, let’s sort it all now…
I flew around town like a madman having things done here and there. We tested for Lupus and Rheumatoid Arthritis. My GP then rang me, my Wagga surgeon said to come and see him, then my Sydney gastro called me last night…
Long story short, it just seems I have some active Crohn’s somewhere and have been spared additional autoimmune diseases. I am now needing an iron infusion (can have in Wagga), then a trip to Sydney in the next fortnight for a small bowel scope and will start Stelara infusions. This is an autoimmune drug I’ll need every 8 weeks. The first one is via a drip, then Andrew (hubby) will inject me at home every 8 weeks after that. Also, I will start a small course of prednisone today. This one is a necessary evil. It’s horrendous in the side effects, but in about 3 days it makes you feel like you can run a marathon!
Anyway, I’m ok with it all. I just have to roll with it all. It’s been 25 years now and I know no different. I’ve had a pretty good run without immuno-suppressant drugs for a long time now. I am nervous about starting them though in this COVID world. I am probably lucky to be living in Wagga and can stay isolated if needed.
Onwards we go… I’ll update more in a few weeks. Stayin’ positive…
You can follow most of my updates over on my Instagram stories.