One of the medications for Ulcerative Colitis are steroids, I was put on a course of Prednisolone in June this year. I started at 40mg a day and this did cause my flare up to go into remission. The problem is that when you put these steroids into your body, your body stops producing them itself so you can’t just stop taking them. You have to taper them down by reducing your intake over the course of weeks or months.
I was tapering at 5mg a week. But unfortunately once I got to 10mg, I started to flare up again so my dose was increased again. This time the steroids didn’t affect my flare up, it just got worse.
This was the point that I ended up in hospital on high dose IV steroids. I had these for 6 days and they didn’t help at all. I actually got worse while I was in hospital – I was going to the toilet 12-15 times a day and losing so much blood. And that’s why the decision for surgery came about.
Annnnnnyway, the same thing needed to happen with the tapering from the IV steroids, so since I left hospital I have still had to take prednisolone. They put me on a fast taper of dropping 5mg every three days. I’m down to 10mg and will be off them totally in four days time!!
The whole time I have been on steroids I have had insomnia. Deep unrelenting insomnia. Since the end of June I haven’t slept a full night and have taken sleeping tablets pretty much every night. Insomnia is soul destroying, the tiredness without the ability to fall to sleep is tough!!
I also have to take calcium twice a day as steroids can cause osteoporosis, and since my surgery I have to take lanzoprosol for the course of the steroids.
So in four days I will drop four meds! I am already off ALL my Ulcerative Colitis meds. Unless you have to take regular meds you’ll have no idea how emotional it can feel. I despise the fact that, for ten years, I have had to take numerous daily drugs to make me function as a normal human being. In four days, the only medication I will be taking is paracetamol and codeine for pain relief. And as Im recovering I will be slowly taking less and less of those too. Im so happy about coming off the meds I could weep. The surgery has been such a huge thing, but the light at the end of this tunnel is that because I had my large bowel removed, I no longer have Ulcerative Colitis. Im cured. I just don’t have it any more. How cool is that???
If you want to know why Im so happy to get off the steroids, just take a peek at this list of side effects…
As I have dropped down now to the lower doses of the pred, it seems that the side effects are waning too. Last night I said something to Timm I haven’t said in months – “Im dropping off, Im going to bed” – I still had to take a sleeping tablet but I went to bed at 11.30 and fell straight to sleep. I got up around 5am to empty my bag, but then went back to sleep till 9.30am. The last couple of days I have actually woke up feeling rested in the morning.
Now, I don’t know whether its to do with the meds or because I have been doing a little more but I feel sooooooo tired today. Really exhausted. I know I need to just take it as a cue from my body to slow down. Its a weird feeling after months of insomnia and sleeplessness that all I want to do is nap. I feel like a switch has turned in my head, I feel less manic and less hyper. I feel like everything has just slowed down a little.
Today is my son Charlie’s 13th birthday party, he is having a few friends over for pizza and movie night. Timm has taken over completely and has organised everything! So I am going to spend the day napping, reading magazines and generally relaxing and then this evening Im going to hide in my bedroom with Thom and Ellie, my younger kids away from the teenagers!!
And now, Im off to nap…
Love Sam xx