Tag: steroids

Day 3

Things seem to be going ok; I’ve only had a few stomach cramps and food is passing mostly painlessly. I’m staying clear of spicey or overly seasoned food, and I’m only having a few fruit and veg as these can irritate my gut. I finding my appetite is smaller now and I’m sleeping better too.

Day 1

Of not being on steroids. I’ve just had lunch and my stomach is hurting already. It’s done this a few times after eating this last week but it’s the only symptom so far. I hope this is just a adjustment thing and not the norm.

I’m continuing with the mesalazine and mercaptapurine, with influxamab infusions every eight weeks. I hope it’s enough. If not, I guess we’ll find out in a few days.

Only three more days until I finish the predinsolone. I’m still not sure how I feel about it; on the plus side, I’ll be off the steroids so no more horrible pred-side effects. On the down side, I don’t want a repeat of what happened last time I came off them and end up in hospital because of a flare-up. I don’t think a relapse is likely as the only symptom I’ve had recently is stomach pain, but I can’t help but think things may get worse once I come off them completely. I’ve got my appointment with my GI on Monday but it’s only a follow-up for the mercaptopurine. I’ll be sure to mention any increase in symptoms as well as my height resting heart rate to him. I don’t think he can do much about my heart rate but ti’s probably still worth mentioning.

This week has been weird. I’m half way through my sixth week of prednisolone, taking 10mg per day, and I’m getting a dull pain in my left side which I usually associate with a flare up. Only, everything else symptom-wise is fine. The pain isn’t too bad, I’m not needing pain killers, but I am noticing it more.

It doesn’t seem to matter what I eat; I get the pain and a need to go to the bathroom shortly after each meal. I only had soup for lunch but we were a little naughty and had Chinese for dinner, which has only ever made me bloat in the past.

Ah well, hopefully, next week will be better. I go down to 5mg of prednisolone per day on Wednesday but provided the mercaptopurine is doing what it’s meant to, I shouldn’t have any/too many issues. I’ve got a follow-up appointment with my GI at the hospital in a couple of weeks so I can always discuss things with him. I am hoping to have spoken to my GP about my high heart rate by then but we’ll see. I just hope I can get an appointment with her soon.

Bun-less burgers with bacon, cheese and BBQ sauce on top and a side of potato wedges. Not the healthiest of dinners but gluten-free and just what I needed.

The pain in my side from earlier has gone and I’m feeling ok. Although I’m still nervous about coming off the steroids, I think I’ll continue to be alright if I’m careful with my food. I’m going to try and have a bit more fruit (I’ve had only the occasional satsuma since coming out of hospital last month), and I’m going to try and stick to as gluten-free a diet as I can. I’ll go back to making gluten-free brownies soon. I might also try a few gluten-free cookie recipes a go too; it’s almost Halloween so I might try some of the themed recipes I’ve seen.

Two weeks left!

So, I’m only taking 10mg of prednisolone now and I go down to 5mg next week before stopping entirely. I’m both happy and nervous about this; happy because yay, no more pred-face or weird hunger, but nervous because last time I came off them I ended up in hospital for a week. I know the mercaptopurine and the infliximab infusions are meant to essentially “take over” from the steroids once I come off them, but I can’t help but feel like they won’t be enough. I don’t want to go back on the prednisolone if I can help it but I don’t want to end up flaring again. I’m already getting a pain in my left side and when I need the bathroom, it’s kind of urgent. Also, my gut’s been quite sensitive to a lot of foods recently so I don’t really know what to do.