Well those days took a while...

Oops.

Well, things have been happening.  Since my last post, umm...  I've been on Pred (nearly off it now, thank the gods), and salofalk, and for a little while predsol suppositories.  I've also ended up on Nexium thanks to the Pred.  The Prednisone didn't affect me quite how it used to, but there were some similar effects (hello weight gain!) and a few new ones too.

The wonderful company who deals with the Humira here is Aus also decided to give me additional doses of Humira on compassionate grounds, so instead of one shot a fortnight I was on one a week.

All was going okayish until the last week to 10 days.  I'm down to 2.5mg of Pred, so barely anything.  Unfortunately it seems the Pred has been masking everything.  My inflammatory markers are creeping up again, my gut's insisting on pooping more often, and making it liquid and slimey to boot.  I'm fatigued, and for the first time as a symptom of Crohn's, nauseous too.

I saw the specialist this afternoon after work and discussed everything with him, and it's essentially lights out Humira.  Three years of mostly good times with that, and it's all over.  I see him again in three weeks to discuss how to go about getting on to Infliximab.  I'm mostly okay with that, except for two things.  One, it's one step closer to having bits of my guts hacked out, and two, there's the whole sitting in a hospital for a day every eight weeks.  Guess if it works it'll be worth it though.

Anyway, that's the short story of the last few months.  I'll try and put talk a bit more regularly, but really, who am I kidding?  :)

Hope everyone's well.

Just an update

I ended up taking myself off the flagyl after all.  I was getting bad stomach pains and was over being sick all the time.  After a week off it I'm glad I did stop it, the nausea and vomiting has almost completely gone away, and I've managed to work the week (hooray for an income!).

I think today is day 14 of Prednisone (50mg), I can't quite remember now but give or take a day.  It's also day 4 of near migraine style headaches and extremely tight and sore jaws.  It feel like there is a vice just below my temples and it just keeps getting tighter.  The headache is all over, but mostly right in the middle of my forehead and temples.  

And I've now been back on Salofalk for 4 days now (the headaches and jaw pain started before I started the Salofalk).  So I'm now on pred (50mg), salofalk (2 tabs twice a day), and humira.  Still getting stomach pain, horrid diarrhoea, slime and blood.

Also very tired and starting to have trouble with sleep a little.  Heaps of hot flushes, though I'm over the moon that the munchies haven't kicked in yet.  I haven't really been paying attention to my weight, but I've not gone ape with food so hopefully things won't get too bad like last time.  I'm determined to turn the pred on it's head this time and lose weight rather than gain it.  My joints are starting to ache a little, I just hope they don't get too bad.

The doctor is hoping that the combination of pred and salofalk will kick the humira back in, but in all honestly he doesn't sound confident.  He mentioned the possibility of Infliximab infusions, and vaguely mentioned the possibility of surgery.  I think he's hoping something will work before it comes to cutting me open.  Fingers crossed hey?

I'm not dead in the water yet this time, but there's still the little voice in the back of my mind that sits there niggling, telling me it'll only be a matter of time before the meds turn it all ugly.  I think I'm finding it easier to stay strong this time around though, having the wonderful man in my life that I do gives me the most amazing boost.  He was aware from early on that I have the Crohn's and that it was treated with meds, but it's one thing to know that and another to experience someone flaring.  He's being such a strong person, and his support is priceless.  I asked him the other night what he thought when it all kicked back in, and was given an answer  of "it didn't really phase me".  I don't think I can convey exactly how much it means to me to have him here, all I can say is thankyou darling.  I love you.  <3 div="">

Pain (AKA She learns how to put pictures in!)

Hmm..... So. Went and saw the rhumy yesterday. On the plus side? He wants to interfere with the Pred 'cause he wants me off it. This is a good thing. If he hadn't interefered I'd be sitting at 15mg for the next few weeks, which is better than 40mg, but not as good as none. Instead I'm backing down by 2.5mg per week until I'm down to 5mg and we go from there. On the downside? He's suddenly decided that I don't have inflamitory arthritis, despite the x-ray proof, and his previous opinions, and oh, I don't know, the excruciating pain. So. Not only do painkillers not make an appearance, it now seems like he won't be pushing for the humira or infliximab. Bad. Very bad. Because the GI wants me on one for the Crohn's so it doesn't get bad again, but because of all the hoops, we can't get it for the Crohn's. He was relying on the rhumy getting it for me for the arthritis. So was I. Won't go into the temper tantrums, but let's just say it was better I wait a day to post than post straight after I got home.

Also a bit mentioned about sleep and pain and vicious cycles. Oh, and the warmth and massage and exercise to help with the pain. *dumb look goes here* Sure, I don't want drugs if I don't need them, but fuck me, how much pain do I need to be in and how messed up do I have to be for somebody to damn well do something?

I'm just so tired of nearly getting my head around something and then have everything change.

My fish are being cute, as usual. Them, and a glass of scotch and coke settles me. I still get lost in watching them. I swear, I'll glance at the tank and then ten minutes later realise that the quick glance has turned into a ten minute staring contest. With fish. :D

Here are said fish and fishtank
(finally learnt how to put pictures in too!).


Above is one of the cute baby catfish.
Find him! I dare you! :)


And my all too cute black moor, all cured now. :D

Yay!

Yay! Went to see the GI yesterday arvo after work, and I'm down to 15mg of Pred a day now. Yay! Happy dance for me though? My joints have decided that they hate me today (again/as usual). Was also told unfortunately that there's no chance of me qualifying for humira/infliximab with the Crohn's alone, so the GI's hopeful that the rhumy can get one or the other (most likely infliximab) for me with the arthritis. See him on Friday, so I'm hoping the ball can start rolling then. I'm getting fed up with the pain, and I'd very much like to come off the Pred completely, but the GI's hesitant to do that until I'm on something else (so much for not wanting to turn me into a druggie...).

Yeah..... Nothing new really apart from that. Other than I'm glad I took the sleeping tablets last night. Still woke up heaps and didn't really sleep that well, but I think I would have only had about two hours again if I hadn't taken them.

Meds and Money

Went and saw the GI yesterday after work. Things seem to be going okay. Inflammatory markers are within normal/close to normal. At the request of the rhumy, the Pred has been reduced. Instead of 40mg a day, I'm now on 30mg for a week, then 25mg for a week, then down to 20mg. I stay at that until I see the GI again, in about a month. Am somewhat stoked about this, just still scared that I won't be able to be weaned off it completely.

There was also talk about Infliximab as opposed to Humira. It was mentioned in the letter the rhumy sent the GI, so I guess that's the one they're going to aim for. It also seems the rhumy will be the one dealing with that, because while there's hoops to jump through either way, it seems for the arthritis they're just hoops, but for the Crohn's it appears they like to douse them in flammable liquid and set them on fire. Oh, and maybe blindfold you for good measure too. Not so sure about the Infliximab, but will worry about it when they're actually going to put me on it.

Am sore today. Elbows, shoulders/upper back, and my fingers are going too. Worried slightly that it could be from the drop in Pred. Will have to keep an eye on it. Am very tired too. Need sleep.

Support group tonight. Hoping to make it. We'll see.

Payday tomorrow. And late night shopping on Thursday. There's a shirt I've seen somewhere, and despite it being $70 I can't get it out of my head, I think I'm going to go and get it. Or at least try it on. :)
Plants may or may not be going to appear on my work desk. Am leaning towards those small bamboo plants in the pretty pots, just for ease of looking after, and also because I have a rather not so green thumb. Seriously, I have managed to kill every single plant I've owned, and that's saying a fair bit seeing as the only plants I've ever had have all been cacti.
Am also going to spoil my fish. They've been swimming around in an unfiltered, 6 litre bowl since I got them, along with the two or three plants (which I might add, they've finally stopped uprooting!). There's a tank I'm looking at getting them and setting up over the weekend which is significantly bigger (20 litres), and includes a filter and (I think!) a light. Will also get more plants for them, a different brand of weekend feeders (they're fussy buggers and won't eat the current ones I get for them), and maybe a statue or two for decoration. If they're lucky they might get some live food too. :) See? I'm a good pet owner.

Gargh hands hurt!