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Thanks Dusty, and Dexky you are right best to ask Dusty :D

My belly got large yesterday, I'm doing my crohn's preggie look :voodoo:

The gastrosoothe/buscopan is no longer managing my belly pains, so if they get worse today I will phone my nurse so she can ask the doc as they are having a meeting about me on Friday to discuss where we are at.

Dusty dinner is around 6:00 - 6:30 these days :chef: I made enough yesterday for dinner tonight as well. So Friday it will be fish patties and wedges and brocolli with lemon juice. I now have to see if there is any baseball on today, catch you all later
 
Yesterday I phoned my GI after my blood tests came through (they were still high - even with a day of antibioctics) - and I have an appointment with him today at 12:45. So hopefully now something will happen to manage the pain, get the belly down and the bloods back to normal, make me poo normal. I'll keep ya posted. I have pain in three places in my bowels, in addition to my current back pain in lower sacram and endo pain as well.

It's 1:30 in the morning and I've been to sleep and woken up already :ybatty: I am watching IPL cricket at the moment.

Yesterday I made sundried tomato bread and I also made museli.

I want to start to do my ANAZC baking soon - I thought I would take an morning tea in to hubby's work to encourage them to purchase red poppies and remember our ANAZC's that fought for our freedom - we will remember them
 
Hi

Gosh I'm tired at the moment. Today has been full on - My GI phoned and asked if I could go in earlier so I went in for 11:30 apt instead of 12:45 - that was good.

As a result of that I am now booked for a CT Scan with barium follow through on Monday at 8:30; I will also have a chest xray; bloods and on 30 April I have a colonoscopy. Meanwhile my GI is sending in an approval request for Humira. He hopes to give me 4 jabs on 30th April after colonoscopy. I am to stay on the pred at my current rate and to stay on the aza as well.

On 27th April I am getting my filling fixed as it fell out over breakfast. I thought it best that they do this before I start humira.

They think I should be able to self inject the humira as I was trained for mthx - so here's hoping.

I'm gonna rest for a bit - I'm stuffed now
 
He took me through the Crohns Activity Index - and I did remind him that the index assumes crohnies have diahorrea rather than constipation and that I am a constipated crohnie so he would have to take that in to consideration in his final figure - He agreed - and did look a bit surprised at me :thumleft: - but it pays to be informed - I think he said I scored 348 without the diarhorrea anyway.

It pays to know how the disease impacts on your body and how some standard measures may have an impact on how people perceive how well or not you are.
 
Hi Aura

That pretty high level, my daughter only got to 68 at her worse. Even when they were talking of hospital treatment due to severe weight.

Hope the new treatment work better for you and is approved quickly.
 
I thought it was high too - but some days I feel that I should be managed in hospital rather than at home - but I like being at home and do not like being in hospital - I think he is trying hard to keep me at home with all my creature comforts like TV, internet, laptops, day sofas with cuddly duvets:biggrin:

At least he knows now that I am not a well crohnnie and we need to act - so that is good eh?
 
I've read on the Pharmac site that you need to fail on methoxtrexate and azathiorprine first and I also have the comorbidty of the diabetes as well. I am confident that I meet the criteria and I guess my GI is as well as he gave me the Humira take home handbag with DVD and booklet and other interesting accessories. But as with any government agency you just dont count the chickens before the egg hatches
 
I don't think yourgi would be filling out all that paperwork if he didnot think you had very good chance of approval. That high indexed should help.

In your case wishimg are sick enough for approval and then a speedy improvememt
 
Your GI seems to be quick to ditch the Aza! It's supposed to take up to 6 months to reach therapeutic levels isn't it?? Ah well, you and EJ can be Humira buddies. He's icing his leg as I type this. It's humira Friday!
 
I'm still doing the aza as well as humira - so we arent ditching nothing yet :biggrin: we just adding more drugs - I am now allowed to take 8 panadol a day for pain along with gastrosoothe - he doesnt want me to take anything else for pain as it will make my crohns worse - 32 pills a day now and soon some jabs --- oooohhhhh how lucky am I :ywow: It was 21 with breakfast this morning --- anyway its not going to be foreever - just for this moment in time - so as always its doable eh?
 
Hi Aura,

You are so brave and have a wonderful attitude to all the dramas us cronies go through!
Wishing you all the best with the Humira..
 
Thanks Jeeasha, I mean that :thumleft: you made me feel good about being me :ylol: I have this song running around in my head that seems to keep me going - I changed it to be a chronnie song for me...

Truth is, I thought it mattered
I thought that music mattered
But does it, bullox
Not compared to our people, matter

We'll be singing
When we're winning
We'll be singing

I get knocked down
But I get up again
You're never going to keep me down
I get knocked down
But I get up again
You're never going to keep me down
I get knocked down
But I get up again
CD never going to keep me down
I get knocked down
But I get up again
CD never going to keep me down

Pissing the night away (We could to pooing - or straining for the consitpated)
Pissing the night away

She drinks movicol drink
She drinks lactulose drink
She drinks benefiber drink
She drinks a metamucil drink
She sings the songs
That remind her of the good times
She sings the songs
That remind her of the better times

Oh, Chronnie Gal
Chronnie Gal, Chronnie Gal

I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down

Pissing the night away (We could to pooing - or straining for the consitpated)
Pissing the night away (We could to pooing - or straining for the consitpated)

She drinks movicol drink
She drinks lactulose drink
She drinks benefiber drink
She drinks a metamucil drink
She sings the songs
That remind her of the good times
She sings the songs
That remind her of the better times


Don't cry for me next door neighbour

I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down
I get knocked down
But I get up again
CD You're never going to keep me down

I get knocked down
(We'll be singing)
But I get up again
CD You're never going to keep me down
(When we're winning)
I get knocked down
(We'll be singing)
But I get up again
CD You're never going to keep me down
(Oooh, ooh, ooh).....
 
CT Scan, Bloods, Chest x-ray today

Hi ya, today is a busy day for me. I have my CT scan at 8.30 - well thats when I start drinking the barium - yuck! Then I get some bloods tests done for pre-humira and a chest xray as well. Hubby has taken the day off to drive me as I am still very bloated, very sore, very sweaty, very pale and surprisingly I am still very happy. My baking turned out great yesterday, ANZAC muffins, and I also made some cheesy, chilli bread rolls for hubby's lunches this week. Last night I made a yummy satay and it was great for my diabetes count - fab news I'll will keep that receipe.

I did another song in the humour section - 'I'm bloated and I know it' an LAMFO take off tribute to crohnnies
 
Ok, it's all done - I drunk the yucky stuff:thumleft::thumleft:, had the CT with contrast - my vein was being naughty - but came to the party in the end. I had my chest xray and I got my bloods done, this time the other vein was naughty - was a surprise. I got my CD's of xrays and scan but the scan CD is corrupt so I can not see any pretty pictures of my insides. The docs will have the results tomorrow. I will have to phone the radiology and get them to burn another disc for me.

I have had a sleep for 2 hours now as I was tired after the outings - and having to hold back on the morning meds and pred until I could have some food.

We dropped the baking off at hubby's work so that they could have a ANZAC morning tea celebration :thumleft:
 
Well done Aura!!!
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Good luck with the results mate.

Is it a public holiday for you on Wednesday?

Dusty. xxx
 
Hi Dusty,
Yes it is a public holiday on Wednesday - well done you for going to a dawn service. My grandfather was a mechanic in the war and he was a 'tail end Charlie' - so he used to pick up and bring our injured and fallen soliders home. While it is a sad day it is also an amazing time in our histories in terms of colloborations, working together as communities. No matter how much fun and cheekiness that exists between Kiwis and Aussies at the end of the day we will always stand strong and alongside each other to support each other when the chips are down. We are family - at the bottom of the world! I also like to celebrate the fact that the women stood tall, went and nursed the sick, and stood in for the traditional male roles in the workplace so that the economy would continue in the absence of the soliders. A sense of ethic of care and community exists and long may it do so in today's world of chaos and change.
 
I got some results - My chest xray is clear which is good for humira. CT scan shows small bowel inflammation - but no obstructions or strictures. So that is great news, my two shots of lactulose has been doing its job. So it looks as though it's just the crohns we have to deal with - which again is good news. They reccomend I get an ultrasound on my ovaries - but I have Poly Cystic Ovaries Syndrome anyway - so could be good to get that done - and maybe now - they will come out.

My bloods from last week still show high WBC and Neutrophills - My urine was clear for infection - so this would suggest that its crohns inflammation as well. SO - I got crohns :ylol2: - funny I thought I knew that at the beginning :D - at least there is nothing else to add in to the picture at this stage. Now just got to do the prep for the colonoscopy over the weekend and then bend over - so to speak :voodoo: I still got the pains, sweats etc and 'I'm bloated and I know it!"

I'm gonna do some baking soon, I need to make a loaf of bread and then some bikkies - I was thinking about white chocolate and cranberry cookies...
 
I just had the best afternoon EVER :thumleft:

Trev and Deb came around for afternoon tea. It's the first time I have ever met face to face another crohnie from the forum :dance::dance::dance:

Trev you and Deb are awesome!!!! Thank you so much for coming over and you are so welcome anytime you like. So amazing to met people that really do get the crohns stuff - and live with the reality of it.

So Trev, you now have permission to give me shit!!! Bring it on...:poo:
 
yes it was a great afternoon, the blueberry cookies were yummy. now we have met i can treat you like an Australian and give you heaps.
 
Oh Gosh, it's 3:30 and I woke up at 12:30 am with a headache - I am still awake now so I have got out of bed and moved in to the lounge. Headache is from dehydration, probably due to my 2 shots of lactulose a day. Do you even then I can't poo every day - it's every second day. My body seems to have slowed so much it must almost be at a standstill. I swear if I was not on the lactulose and making it move it would be well and truly compacted by now. I have no desire to eat food - but I need to due to the diabetes so I just do it. I have not got hungry on the prednisone - still at 8 tabs per day. Wait till after the colonoscopy to see if and when I can start to taper.

I still got fire in my belly just below my sternum and above my tummy button, got my regular crohns pains - right side under ribs, left side under ribs, left of tummy button as I look at my belly.

Maybe - after Monday I may get some respite. I am well stocked with baby wipes for the Klen Prep for the colonoscopy. I also have nice fragrance in the loo, and a great book of pick me up comments to read - nice short ones to having a great life :biggrin:

Today I will try and find out if I have got the government approval for humira and then I can get my script filled for monday. I'll watch the dvd at some point today or tomorrow.

I think I might make meatloaf for tea tonight with potatoes, brocolli and pumpkin. Tomorrow I think I will try and attempt to make my own tortillas :D
 
I didn't do meatloaf, I did a stirfry - beef, chilli and seasame (pounded to a paste), with bok choy, shiitake mushrooms (Not shit ones Dexky, Shiitake), carrot and brocolli, served on rice with a few cashews on top. Total yum.

Still no word on the humira approval. I did speak with my pharmacist yesterday - I had to wait 45 mins until he was free:frown: - he said that if we here by 4 pm today then he can get it in for tomorrow and we will have it for the Monday after the colonoscopy. If I phone him this afternoon about 3 he will access the system and see if it has gone through. Meanwhile I will wait and phone my GI's office to see as well.

Yesterday my to do tasks (Chemist, Post Office, Supermarket, Wholesalers, Drop off TM/Ebay stuff) took me from around 11 till 5 pm! :yfrown: I was totally over it by then and totally stuffed, tired, buggered and shattered, grumpy, frustrated and my knickers got in a big twist. I untangled them by going anticlockwise around the washing line :biggrin: Then I found a moment of peace and joy in the kitchen and cooked a yummy tea. Hubby came home, and all was well.

Today I slept till 4 am - I think that is good for me at the moment :p I have woken up with a sore left cheek for some weird reason - Ah well, another crazy day in my med filled world at the moment (only 32 pills a day) I want to go in to a rest home and say - put your meds on the table and I'll put mine - "I win!" I reckon I would with most of them :ybiggrin:
 
The deadline was 4 pm today for Humira approval to come through so that my chemist could get it in stock so my GI could do 4 jabs after my colonoscopy on Monday afternoon, evening. AND.....

At 3:36 the phone rang and it has been approved - so I get to get 4 jabs and cry like a baby on Monday. Here's hoping it will put me in remission - fingers and toes crossed please, knock on your knoggins for good luck, and dance around the maypole :ylol:

My tooth got fixed today - only bit my numb lip once - dont you hate it when you do that and you have tried so hard not to for hours and then next minute you are thinking when the heck did I bite my lip??

I made museli bars for hubby's golf....hmmm a sneak taste surely wont go a miss...
 
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Woohoo! and just in the nick of time! Nothing like making you sweat it out...:yfrown:

Good luck hun! I hope all goes wonderfully well...:goodluck:

Dusty. x:heart:x:heart:x
 
I am half way through my first 2 litres of Klen Prep - yuck!!!! I started at 5:45 and still haven't :poo: yet. I will keep on drink - but my face looks like a cats arse when I drink :thumbdown:
 
I am down to my last half glass - I look 6 months preggie again with it all. Still no :poo:

And to think I have to drink another 2 litres of Klen Prep at 7 tomorrow morning.

Ok - time to chug the last amount :cheerss::facepalm:
 
It's my first time on Klen Prep - my GI wouldn't let me do Fleet this time - I tell you I still haven't :poo: yet. But I guess that's what I get for having a slow system and being a constipated crohnnie, eh
 
Hi Aura,
I know it's a serious matter but I often have a chuckle when I read your posts, you always make me laugh.. I so remember drinking that stuff and texting my girlfriend who had taken it prior to me saying "One glass down 20 to go".. She recommended adding some lemon juice, but I thought that would just add the same cats asre look your talking about. A couple of hour later I was officially a shitting machine..

Hope it works for you..Good Luck with it all tomorrow Aura, hope all goes well.
Are you having your 4 shots tomorrow as well as the scope? Big day?

Sharyn
 
Hi ya - yea a big day today 2:15 Colonoscopy and then I get the four shots. Total big day followed by a cosy date with my duvet and pillows.

You know it's 5.35 in the morning and finally I had my first :poo: - Hello??? how slow is my GI tract? I took the stuff from 6:00 pm last night. It took 11.5 hrs to work on me. So now that I am awake and starting to frequent the loo - well only be once so far. I thought I'd better start the second lot, otherwise I am afraid I will still be going when they want to scope me :ylol:

It's the best that we can smile, laugh with the strangest of stuff that we have to go through as crohnies - we are the only ones that get it. We can look great on the outside and be so sick on the inside that those closest to us - sometimes do not understand the severity of the disease. I'm so glad that my crohnnie mates read my posts - otherwise I would be so alone in this madness - whoelse and whereelse could I talk and write about shit or not to shit and how it takes my body forever to shit after two litres of klen prep. So a big thanks to you all that read my posts - I really appreciate your company on this journey :ghug:
 
Holy Guacamole! That is slow! I hope all is cleared out by the time the silver stallion comes to call!

Good luck mate! With the scope and the shots...:goodluck:

Dusty. xxx
 
:ylol: Dusty - Well I just got the bums rush - literally

Hospital phoned me up and they want me in at 11 am now - I told them about how slow I was but I think I am making up for lost ground now.
 
See, that was your sixth, not sexth, sense kicking in starting the morning brew early!

Dusty. xxx
 
Hi ya - it's now 6:40 and I have just woken up - and I thought it was morning and not night time - I was so confused :ybatty:

I had the Humira injections at 12:00 - ok when people say they sting - I think that should be they hurt like F*&k - because they do. $ sets of reciting the alphabet later I had four in me.

I had the colonoscopy - had to keep rushing to the loo right up until they were wheeling me in the room. I'm still going too....my bloody GI tract is so slow the prep is still working on me now.

Anyway they found a few minor things but nothing to account for my high white cell count and neutrophilla. So next week I am swallowing a camera at the public hospital - and with joy I get to go through Klen prep again.

I did let my GI know how long it took to work on me, maybe we should just start now :rof:
 
Phew, so good to hear you survived the day! :):):)

Hmmm, yeah, why stop. Just keep downing the prep until lights, camera, action!

Dusty. xxx
 
Oh you poor girl, I can't believe you went through that and the prep is still working!:frown:
You must have felt like crap! :voodoo:lol, sorry I couldn't resist.
Glad it's over now just got to get through the next journey.. Hope you get some sleep tonight..
 
:ysmile:I slept till 5 am which is great - given that I also slept 3 hours yesterday avo. IT's one scope down and another to start. I'll get more Klean Prep today - what joy :eek: and phone the GI office to see when I am booked in.

By the way - I still can't trust a fart yet...:stinks::poo: I think I need to stay near the loo today

I do wonder if I can swallow the camera after the nissen fundoplication. I wonder how big/small it is? Or do they shove it down your throat to get you started?

It's fun taking the crap out of ourselves at these times :ylol2: How else do we get through it with having a laugh, I find it fun - I mean what was I supposed to say to my GI when he tells me - "Here comes the cold lube..." I got to think of something better that "Bring it on.."
 
Thanks Dusty - that was good to see.

Guess what?? I start my prep now!!! 4 x more Klen Prep to be done - I will start at 3 instead of 5-7pm. Nil by mouth from lunch. Tomorrow at 7:45 I swallow that camera - totally doable. I'll keep my blood sugars in check and away we go.

:ylol2: am I laughing or crying???:ylol2:
 
HI ya - it's 3:39 in the morning and still no :poo: it's not far away now - I can hear it gurgling in my large colon - I reckon by 4 I will be :poo::poo::poo:

I just hope I finish before I need to hit the road to head in to town for my 7:45 appointment. This does make me wonder if the camera will be through my small bowel by 4:00 in the afternoon when they take the recording data off me. I will mention this to my GI today.

I still feel like I got the slowest GI Tract in town...:medal1:
 
So since Sunday I have had 7 sachets of Klean Prep - it does work eventually with me - albeit over the last few days

Now I am a sad case - with an arse in tatters - and I used baby wipes as well not paper and it's still raw. Procedures are over and the Klean Prep is still working as I am still :poo: Camera ain't come out yet...

Going to see if I got some proctocedyl cream - any other remedies are welcome - as with taking the mickey :ylol: must dash again :poo::ybatty:
 
Far out Aura, I don't think I could physically, drink that much prep without getting to a point of throwing up..:tongue:You are a machine in more ways than one.. :thumleft:
Dosen't the alcohol in the baby wipes make your but sting?? Kleenex Aloe vera tissues might be good? Can you get them there?
I hope that pill cam comes through for yor too. I feel for ya mate..:rosette2:
 
Hi ya - yea I can get them here - sounds a good plan for tomorrow. Heaven forbid I should still be :poo: but it wouldn't surprise me :ylol: My wipes aren't supposed to sting - they are the ones we use for childcare - but I have been so often I guess it is not a surprise.
 
My GI phoned me this afternoon. He had already looked at my images last night after I dropped them off at 5 pm. He picked them up on his way home. Anyway he found active crohns in my small bowel - not sure where is small bowel but he watched about a two minute clip of it as the camera went through. He also found other sore spots in there too. So he is happy with me staying on the Humira, Aza and I can go to 20mg pred for about 6 weeks and then he will start to wean me off pred. I will see him again in 5 weeks. Continue with weekly blood tests until then. So we have found it, and we have a plan. He also took out the polyps in the large bowel and found some patches of inflammed tissue there as well. Waiting on biopsies as well.

So they only thing left to do, which I will do next week is to have a pelvic ultrasound of my ovaries. Apparently they should not be 5cm each, but I do have PCOS - so will get that investigation underway next week. At least I dont have to do Klean Prep for that one.

To be fair I am still a bit buggered :ylol: from this week of tests etc. and still having the liquid :poo: thanks to it all. But that I can recover from with a bit more rest and sitting on the sofa. Today I tried, but I did make some bread rolls; go to the post office, and chemist; did 5 loads of washing; got it in again; did work on my hubbys assignment (editing, referencing etc); took photos for trademe. Now at some point I will make beef lasagne for tea.

But not for an hour or so........
 
It's been an hour but I hope you are still resting. So sorry about the overload of tests. :rosette2:
 
Yay! A plan is good! It dosn't change things but it's kinda releif when you know what exactly is going on..
 
I did rest for an hour - feet totally up. Now I am cooking lasagne, and then resting some more.

Yeah - I am relieved that they found it. Cos after a while you know you feel the pain, you know something is wrong - but when they cant find it you feel stupid - You never make it up - who would? So yes totally relieved - totally sane - totally happy - smelling of garlic and onion a bit at the moment. Looked at the red wine I put in the lasagne thinking if only I could have a glass myself. But no - I am a good girl - and just put it in my cooking instead.
 
Today I made a special bread - but it turned out to be special in height instead, instead of oblong it is more square - but that could be due to some of the ingredients and the order I put them in the bread maker.:ylol: Should be fine with eggs benny tomorrow for breaky.

I have had full sweats all day and feel so tired and grumpy and I have been trying to help hubby with his assignment (editing and sequencing and referencing). My chest and throat are starting to feel raw and I do wonder if I have another infection coming on - hope not.

I also made some yummy oaty, white chocolate and cranberry cookies :chef: - Trev I have a whole cookie jar fill if you would like to pop over for a coffee on the weekend? Just let me know.

Dusty, Jessasha, Catherine and other Auzzies book a flight and come on over - I'll put the jug on...:ghug:

I picked up my meds today from the chemist - so funny she couldnt find them. Then the chemist - said for her to look on the bottom shelf. There they were all packed in a supermarket plastic bag waiting for me, too heavy for any other shelf.
 
To be fair I am still a bit buggered from this week of tests etc. and still having the liquid thanks to it all. But that I can recover from with a bit more rest and sitting on the sofa. Today I tried, but I did make some bread rolls; go to the post office, and chemist; did 5 loads of washing; got it in again; did work on my hubbys assignment (editing, referencing etc); took photos for trademe. Now at some point I will make beef lasagne for tea.
Click to expand...

Bloody hell! No wonder you are buggered! :lol: Good to hear that the test turned up some answers for you...:thumleft:...at least being a slave to the loo was worth it! :ybiggrin:

Yikes! I hope you aren't coming down with anything too. Fingers crossed!

Ooooooo, I wouldn't mind a trip across the ditch!

Aura off to pick up her meds!...
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Dusty. xxx
 
I got a letter from my GI today he said "there was good preparation and views of the entire small bowel were obtained..." I should bloody hope so after all that Klean Prep! "...There were multiple mucosal breaks in the jejunum. The mid small bowel seemed relatively spared. The distal ileum contained some larger uclers/fissures."

His recommendation: "Active small bowel crohn's confrmed, despite immunomodulators and steroids. Continue Humira, Predniosone to drop to 20mg daily and remain at that does until review. Continue Aza. Follow up in 5 weeks."

Then he sent me pictures as well in colour - I got 9 photographs of all the problem areas - It looks like planets in the solar system, with the odd tube from an alien and predator movie creeping in every now and then. Then there is the odd patches that look like wiggly toes - teeth size.

Had a good day - doing assignment - now stuffed sweaty and buggered. So on the sofa. Going to make a cuppa and get a cookie, and do some meds. Then rest for the rest of the day and night. Taking some pain meds would be a good idea. I sill got the sore throat - but it hasnt got worse yet.

Hope you are all great you lovely people:biggrin:
 
Hi ya,
Firstly want to share about cooking tea tonight. I decided to make a chicken, tarragon, mushroom, carrot and celery pie - with a hint of redwine. No worries there. I do what I always do, put my pinny on to keep me clean cause I can get messy in the kitchen. So I am doing stuff, onions, cooking on the pan. You get in the groove and then your hands a full, you have three things on the go on the stove and then your trousers decide they have had enough on your waist and fall down to your ankles. So I have 3 pots/pans on the go, pinny on, messy hands and trousers around my ankles...what do you do - this is when you know you have crohns and you are losing yet more weight. Anyway, I carried on, until the pie got in the oven, then I sorted out my trousers.

I went to my doc today and we had a good chat about pain management, life in general. He wants me to go to WINZ to see if I am entitled to any financial help. He does not think I will be in a position to work in an early childhood centre for between 6-12 months :eek:. That's how long they think it may take me to heal if the Humria and Aza combo work. Fingers are crossed, they work. Not too sure how I am processing this news. I love working, I love it with a passion. I need to think about this and how I can work with this.
 
good luck with winz, i couldnt get anything when i stopped work because Debs was working, on minimum wage.
 
Hiya Aura,
I've been thinking of you over the weekend wondering how your recovering after last week and also what storms you've been cooking up in the kitchen.. It amazes me how you manage to do all that cooking..
Hmm.. Do you think you are capable of continuing work? How many days do you work now? Although I am not in your position these questions run through my mind too about giving up work for health or fitness reasons:yfrown:..But for now I am going to see what happens in the next 6 months. I work at Olivia's school (she's my 6 year old) 2 days a week. I'm wondering how may colds and flu's and things will get me this winter.. Being on Metho and all. Fingers crossed for you.. How long does Humira usually take to work?
By the way, wouldn't a catch up with crohnie friends be great.. Love a trip to NZ.. :ybiggrin:
 
Hey Trev, Yeap I know it will be hard - but with our current financial situation with losing our house and business in 2009 I am not sure, so best to findout. When I run out of stuff to sell on Trademe - then we are screwed. But lucky for me I have so much stuff to sell - it will keep us going for the next four weeks and then some.

Jessasha :D I stopped working on my docs orders in the first week of April. I know I am not fit for working in an early childhood centre or as a centre manager etc at the moment. The pain, sweats, fever, effects of drugs on me at too much to cope with. I'd be needing to sleep with the babies and toddlers throughout the day, and the beds aren't big enough. :ylol2: I do have something about my sleeve and I have the help of my brother and a friend to help me realise an online professional development provision. So if I can get this to work then I could work from home and in front of a computer, and that would be the best option for me. If that does not work out then I will see to do some contracting work, such as marking and writing courses from home. Come on over you'd be welcome - just so you know we are shifting to Wtgn soon - so if I am not in the Bay of Plenty I'd be in Wtgn. We have a spare room, and you'd be welcome. Trev you and Deb are welcome too, anytime. And we can also meet you in the Naki, we like going to the Naki for holidays.

I was quite good on the mthx in terms of not getting many infections while working in the early childhood centre. I was a tad overzealous with the hand disinfectant, after touching germ riden objects like door handles, doors, wiping noses, handling money etc. But for myself now being on both Aza and Humira - I think my risks may increase and make it not viable in the long term. Hence the need to find other options.

Thinking about the kitchen and cooking make me feel happy, relaxed and content on the inside. It's my creative outlet :dance:. The chicken pie was totally awesome. I even pimped it out with making decorations with a crimping tool on top, and coated it in a beaten egg. It had lovely flavours.

Today I am thinking about sushi for tea. I have my hubby's friend coming over for today and the night to work with me on this online concept.
 
Oh I'm sorry Aura. I didn't realise you had stopped work. Yes I did wonder how you managed with all those symptoms. Working from home would be great, I hope this works out for you..
I love cooking too, but tend to cook lots things that add the extra kilos, which I don't need right now because pred has helped me gain weight. I'm going to start juicing today, I've stocked up on celery, apples, spinich and carrots.. Maybe a tiny bit of ginger.. My 4 year old is more excited about it than me, he keeps asking when I'm going to get the juicer out.
 
I'm in Christchurch at the moment, staying with my good friend Ally. She is busy cooking tea and I have been having a very restful day. We had a HUGE earthquake this avo is was 4 tonnes in energy but only 3.9 on the richter scale. So it was noisy and bumpy.

I have packed mu Humira in my travel wallet and this is with me for Monday at 12. Pee is still neon yellow, good ol' aza. I have been reading cooking books and Ally went to the library and got some cooking magazines out for me.

This is very relaxing...
 
Wow, time flies

I caught up with Trev yesterday- thanks for lunch Trev and the car. Tomorrow I go to the GI. My blood work is still not good and my white cell is the second highest it has been = today all I have done is sweat, sweat and more sweat.

I made some more cookies - the white choco, oats and cranberry ones. Did some editing on an essay and watch tv. I packed a couple of boxes, but did not lift them. I did have a morning nap as well.

I'm getting grumpy with myself as I want more energy than what I have got and I want to stop the sweats.
 
Packers come on Wednesday, we sold one car today which is great. I did humira shot and that hurt and now my crohns pains hurt more - but it could be a good sign. On Friday night at midnight I will be in Wellington at our new house. This week will fly by, and there is so much to do and I feel crappy, in so much pain after humira in my current flare area. The shot sight is fine. I had two naps today and feel blah. But I am sure the sun will come out tomorrow :ylol2:
 
Hi ya from cold Wellington!

And it is cold, I have had the fire going 24/7 since last Friday. Today I went to the doc and started to get things underway like weekly blood tests again, which I will do tomorrow and can do at the medical centre three days a week which is good for me.

I did laugh after he read my list of medications and said "Shit" - I am sure that he will review each one of them to make sure I am appropriately managed.

For now my bloods and ear are sorted and that's good. Still getting crohns pains but I am okish with it all - got meds to help.

The kitchen, lounge, master bedroom, dining areas are all unpacked. Just need to sort the bathrooms, library, office and spare bedroom then we are done. But we have done well thanks to our friends and family that turned up and worked their butts off on Saturday.
 
Wow, I woke up from an afternoon nap which was about 2 hrs long with the worst abdo pain around my belly button, it was sharp and not cramping.

I was wondering if it could be because I took my midday Aza with no food, or the fact that m Humira jab is due on Monday? The pain has lessened but I am still recovering from the pain.
 
I've done my Humira today - and then slept the afternoon away. I woke up at 4 when the loaf of bread had just finished cooking. I was going to cook a mild chilli for tea but so couldnt be bothered - I am still shattered. But I did get off my butt and cook an omelette. I will need to remember to have a meal ready to heat up on injection days.

Hubby is in Nelson again for the week and comes back on Friday - so its just me and the cats. I have been editing an essay and need to do some work on my professional development sessions this week. I should also unpack the bathroom stuff and bake some more cookies. It will be like this for a while - hubby commuting to Nelson and Blenheim mon to fri and back for the weekends. But it will all come right in the wash.


I visit my new GI on Thursday morning - I'll need to get on Humira down here and it is a different health board. I finally got my bloods done on Friday but not sure what the results were.
 
Good visit with gastro, we will start to taper the pred down and see what's what. Continue Humira, - do the CDAI for continued Humira approval. I'll move in to the public system and use private for procedures as he would like to monitor me more closely and can do that in the public system, with help from his IBD nurse. He reassured me that there are options there for me to get through this bout, and get back in to remission.

All good - and I may be starting B12 injections, I will have to follow that up - he thought I could start that - I will check if that goes in a letter to my doc.

It's all goo - but I'm stuffed now, time for a rest.
 
Hi I saw my Gastro again today and it was a good and productive visit. Still progressing with the prednisone taper. Continue with Azathiroprine and Humira. For the first time I felt listened too when I talked about my back joint pain coming back. It only came back when I went to 15mg pred. Before that I had it when I was really unwell at the beginning of the flare. So now I will get a back xray. I explained that its difficult for me to distinguish between my compacted sacrum s2-s3 joints from a skiing accident and inflammatory joint paint. I know one of my CT scans showed damage around the SI joints. So he will look in to this to determine mechanical or inflammatory.

Once I am off the pred, then it looks like I will have a pillcam to determine effectiveness of treatment. In the meantime I am having another fecal calproctectin test done.

Also getting more blood work done on the B12, iron, folate etc. With agreement that if B12 is still low then I will start on three monthly injections.

He is also keeping an eye on my lymphocytes as they are high outside of normal.

Once this is done then we will move on to my hereditary functional problems i.e. the chronic constipation.

It's all good - apart from the fact I feel like crap with back pain and no energy - but I am so much better that what I was a couple of months ago.

:dance::dance: time to party :dance::dance:
 
Thanks for the update Aura! So fab to hear you are starting to feel better and it sounds like you have a solid plan in place. :) And to top it all off...listened too! YAY!

Now, did I hear a party time!
party-8471.gif
 
What a day!

Started good - went and had a coffee with dad and he found some yummy mocha muffins in the freezer. Next I went to surprise someone that I had not seen in 8 years - that was great until I feel down the stairs - yes I was holding on to the rail, but my legs just went out from under me and I ended up going down on my knees - all the way to the bottom. I felt stupid - let alone sore. Now I have lumps and bruises with sore neck and back. But we had a great catch up and coffee.

Then I went to the hospital for my gastro apt again - this time to be told I have osteoarthritis in my spine si joints. Some days are just harder than others and this is one of them
 

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