Updatey thing - the predisone yay! version

[selenay]

OK, so I started prednisone after my scope on Wednesday. The dosage is relatively high (40 mg) presumably to kick my immune system into touch that bit quicker.

Today I can honestly say that it's making a big difference. No cramping at all since Sunday morning, bathroom visits are normalizing, weight has not dropped for five days and no sign of blood since Sunday either. Also, my energy is returning and I'm feeling better within myself than I have for a long time. It's not the super-zippy, hyped up temporary energy blast that I had after the transfusions. This feels more like energy returning properly, to stay, with the prospect that I'll keep improving steadily rather than crashing in a day or two.

That isn't to say that I'm not tiring during the day, I am, but it's not the bone-deep, must collapse now tiredness. And each day gets that little bit better :-)

The other good news is that, so far, no sign of side-effects. I've got no idea how long side-effects take to develop, but I'm counting the lack of nausea or insomnia as a really good thing. Looks like the pred is doing its job and will be the drug that works well on flares for me.

The next challenge, I suspect, will be getting me into remission fully and then finding the right drugs to keep me there. I've got no idea how long it will take for the inflammation to heal now that the symptoms are going and I'm guessing that I'll be on the pred until it's all healed and then switching. These are the things that the GI guy will hopefully be able to explain on Thursday.

Still, this is really good and I'm hoping that it's a sign that I'll be one of the people who's colitis can be well-managed with cheap, low side-effect profile drugs rather than one who requires hideous diets, massively expensive drugs and frequent surgeries. Let's all keep our fingers crossed, OK?

Yesterday I had my first full day in the office for nearly three weeks. It was tiring, but manageable. Today I'm working from home because it's snowing hard and I'm smart enough to know that I don't need the worry of a bad drive home on top of the tiredness. Hopefully I'll be at the office every day for the rest of the week, which for me is a sign that things are really turning around. The cats decided that I was obviously well enough to be a complete nightmare while I work, so they've been banished upstairs to give me some peace.

To give my guts a bit of a rest, I've been avoiding the mutli-grain, seed-filled bread that I usually go for and instead I'm making tortilla wraps for my lunch. The new lunch menu may be a permanent change even after I'm healed: I've been getting inventive with the fillings and the wraps are making lunch so much more interesting! I'd been in a bit of a sandwich rut lately and I'm not very good at easting if the food doesn't interest me. So this is great and I'm really quite excited about all the potential for wrap fillings.

Yes, I adore food, so having any kind of gut-related chronic illness has always been my nightmare. I can feel the irony. I will be resisting exclusion diets etc. with all my will-power unless there is good clinical evidence for why I need to do that. Everyone with homeopaths and weird woo diets can just stay quiet around me, OK?

Anyone with really awesome wrap recipes can chime in very loudly, though :-)

Comments

[clairecnc.livejournal.com]

I'm not very inventive with food sorry, but I can appreciate your frustration re gastric disorders, so if you ever want to rant, feel free to send me a message.

Am so glad the pred is kicking in, and that you're getting on with it. Good luck tomorrow with the GI doctor.

[selenay]

I love cooking, experimenting with food and trying new things so the idea of having loads of restrictions does not impress me. That's why I'm so glad that the pred is kicking in and the official research doesn't indicate restrictions unless there are specific allergies. Finding out that so many of my issues could be traced to a gastric disorder rather horrified me initially. It's been a relief to talk to people and find out that a lot of people with colitis can eat perfectly normally.

[clairecnc.livejournal.com]

I love food, it just doesn't love me ;) If it's anything like my gastric problems, you'll eventually feel relief when things are a bit more under control. I've been led to believe the drugs are so much better these days. I'm glad you've got some people to talk to. A good friend of mine has UC, and will probably know of some reliable forums/resources if you want me to ask? Or have you got enough for now?xx

[selenay]

I think that I've got enough resources for now, but thank you :-) I've also learned that a couple of my friends have siblings/partners with UC or Crohn's so that's helpful in giving me a realistic perspective on what things are going to be like. I'm already feeling much better on the meds and this does seem to be a thing where getting the meds right is the key to a good quality of life.