Another updatey thing

[selenay]

Yesterday was actually much less awful than predicted. The drugs they gave me were terrific (versed and fentanyl) so I didn't feel anything and didn't really care anyway :-) It certainly got me past the "OMG, so undignified!" moment nicely.

I vaguely remember seeing something on a screen, but I did lose about thirty minutes there so I'm pretty sure that the procedure was much longer than I am aware of. I'll probably be having scopes regularly so knowing how easy it was will put my mind at rest for the next one.

I've been given some preliminary results and the doctor will be seeing me in a few days to discuss it in more detail and hopefully answer the list of questions that I'm gradually building up.

Apparently it's definitely a form of Colitis and he'll tell me what form and how extensive it is when I see him. Essentially my immune system thinks my gut is a foreign object and has decided to destroy it. Urgh. The nurse said there is a lot of pretty bad inflammation in there :-( I'm now just hoping not to lose any bowel as a result of this.

The good news is that the GI guy has started me on treatment immediately. I'm on lots of prednisone, which will suppress my immune system and thereby reduce the inflammation and allow my bowel to heal. Long-term, from what I can find out, I will be switching to another drug for maintenance once the pred has done its job.

It's pretty much what I expected, to be honest, although I suspect that it's more widespread than I'd hoped. It means a life-time of immuno-suppressants and the possibility that it could flare up again, which sucks but now that I know the signs we'll be able to catch it before I get hideously sick again.

Hopefully my GI guy will be able to tell me what I need to do to avoid flares as well. According to what I'm reading, a high-fibre diet is not recommended while I'm flaring and I may never eat a vindaloo again. As I don't like highly spiced foods, this is not going to be an issue :-) But I think that I need lots of information from him about how to handle this and what the plan will be before I make any major dietary changes.

At least we've got a diagnosis, I've started treatment and I'll start to feel well very soon. The cramping today has been very mild and I've been eating regularly again. I'd reached the point on Monday night where I was vowing never to eat again if it triggered cramps every time so this is definitely an improvement!

Also, my lovely team at work sent me an edible 'flower' arrangement, that consists of lots of chocolate covered fruit. They're amazing people :-) I took a sick day today to get some rest and recuperate a bit and I plan to work from home tomorrow because I'm getting tired very quickly. Hopefully I'll have all my energy back next week and be able to make proper appearances at work again :-)

Comments

[paranoidangel]

Yay for a diagnosis!

[selenay]

Diagnosis is awesome :-)

Being told that I have IBS for five years when I actually have this nastiness isn't so good, but diagnosis and proper treatment is going to be so amazing!

At least I won't have to nearly die again to get someone to believe that I've got a problem :-D

[evil_plotbunny]

Yay for feeling better. Now rest up.

[selenay]

I'm trying to rest :-) I'm very, very bad at it.

[evil_plotbunny]

*pets* Rest or you won't get to Redemption. :|

[selenay]

That is actually one of my big motivations for trying to be sensible :-)

[evil_plotbunny]

Glad to hear it.

Did you want me to bring anything for the knitting panel?

[nic]

I'm glad you have a diagnosis, although it sounds like an awful thing to live with. :( ****hugs****

[selenay]

It doesn't sound like it will be fun, but hopefully we'll be able to get me into remission and maintain that for a long time. Apparently people can stay in remission for years, which is positive, and these days not everyone requires surgery.

Yup, I'm looking on the bright side until I get the full information from my GI guy next week.

[sugoll.livejournal.com]

It's great that they've managed to respond so quickly. Hurray for actual facts rather than guessswork. Fingers crossed that the pred kicks in effectively.

[selenay]

I think that I terrified the doctors enough with the nearly dying thing to get some pretty prompt treatment :-)

Apparently the pred will kick in within a few days, so I still hope to be in fit state for Red.

I may have to admit that being sensible, taking things easy and other recuperating things does not fit with all the things that I'd planned at Red. Possibly the book panel may be one panel too far - I know that I was just an extra potential body on a panel, so I hope that won't be too much of an issue.

[sugoll.livejournal.com]

s/panel/panels/. :-) But not to worry about it - your name's not down on the programme, because what with All The Everything, I wouldn't be entirely surprised if you didn't make it at all.

Just do what you feel up to, and that you want to do. No point over-exerting and not managing the rest of the weekend.

[clairecnc.livejournal.com]

I'm glad you've got a diagnosis, but sorry to hear it's colitis. As you said the treatment is much better these days for it. A friend of mine is trying to manage her crohns, with a specific diet combined with medication, which I can't for the life of me remember the name of, but I can ask about it if you want me to.

I'm glad the treatment has started, and I hope the side effects aren't too nasty.

Gentle hugs. xx

[selenay]

I've seen a couple of very specific, restrictive diets discussed on forums. Right now, I'm reluctant to make any significant dietary changes without input from my GI specialist. Being a bit of a food-lover, the idea of cutting out entire food groups makes me shudder so I plan to concentrate on following a healthy, well-balanced diet that involves all foods until I'm told to do otherwise.

So far, no side effects and the treatment is definitely kicking in. I'm starting to feel very positive about this.

[clairecnc.livejournal.com]

I can't remember how restrictive hers is actually, but I know she's allergic to a few things, which may make hers more restrictive than it should be if that makes sense?

I'm so glad you're not struggling with side effects, I hope that continues. I remember getting pred munchies, that can be interesting to deal with!!

Good luck xx