Aura aka Kirsty's updates

[Aura]

Hi there
I decided to start another bloggy based thread to capture the highs and lows of being a poly pharmacy that currently includes Humira and Aza for crohns. As I sit here typing I have a cathater bag after my trip to the ER on Thursday night. I have a UTI and I stopped peeing, I also seem to have a sore throat and a cough. The Pillcam I swallowed last Tuesday came out after using Senna on Friday night - the camera left me on Saturday morning - yahoo!! No more sifting poo.

I am taking my prescribed pain meds for once in my life - oxynorm for 7 days. This should get by BP back down to a lower range.

I am sure my crohns is in remission and I have submitted heaps of job applications trying to find a new job that is not in early childhood. As I cant work in that environment while on 3 immunosuppressant drugs _on prednisone too.

So it's all good - just had a hiccough last week :thumleft:

 

[Grumbletum]

Hey Aura. Sorry to hear you are having this blip. Do they know what's caused the UTI? Do you have to manage the catheter yourself? Sorry for bombarding you with questions!

 

[Catherine]

Hope the remission, is long lasting.

 

[Aura]

Hey Aura. Sorry to hear you are having this blip. Do they know what's caused the UTI? Do you have to manage the catheter yourself? Sorry for bombarding you with questions!

I dont know what caused the UTI i have a past history of cystitis. Yes I am managing the catheter on my own. But the district nurse will come to my house to pull it out tomorrow. I have also had to collect the data on how much is in the bag each time.

 

[Aura]

Hi Catherine - so do I.

This morning I am full of a cold. I had a bad nights sleep and my nose is completely stuffed. I have sent an email to my IBD nurse to see if I am taking my humira injection today or not. I would be surprised if I am.

I think I will be in bed most of the day today.

 

[Aura]

My nurse phoned back and I am not taking humira today. She said I could take it a day either side and it wouldnt matter. But once I hit Wednesday afternoon if I havent taken it then I will need to wait for the next Monday of the cycle.

I cant take cold meds due to my blood pressure issues, so I have to ride it out. I am taking paracetamol every 4 hrs to help with temperature and sore face.

I have been able to do some work from the laptop which is good but I am not pushing myself hard, just crusing. :thumright:

 

[Aura]

I havent had humira yet. My cut off point will be tomorrow morning, if I dont do it then I will have to wait for next cycle. I went to the doc today and I now have a lengthy course of antibiotics for my sinuses.

The nurse came and removed catheter, then I had to do a post catheter trial. She came back and done a scan and I am all good to pee by myself again. :ylol2:

I just want my cat Wolf to come home again - he hasnt been here since yesterday afternoon and I miss him.

 

[Aura]

Wolf came back - he had a sprained leg, so he is resting - which is next to impossible for a hunter cat.

My infections are all going and I did not take humira this week. I will leave it to the next time. I need a chance to get a bit better. I'm still on antibiotics and that reminds me that I need to make some more yoghurt.

It's amazing for me the difference that taking Aza in the evening has made. I used to split my doses morning and lunch. I found that I was constantly tired and weary throughout the day. Also I was sleeping poorly at night with my hubby snoring. I have been taking Aza at night now - both pills - 100mg - and I sleep really well, I also am awake and alert a lot more during the day. It's amazing.

Another change I made after this - is to start taking Berroca - it dissolves in a pint of water and its a Vitamin B and C tablet. This also has been good and made a difference to energy levels. I havent been able to convince my docs to give my the B12 injection yet. Seems I need a miracle for that.

Still on 3 pred tablets, but not worried about that as its only 3mg, I can reduce by half a tablet once a month - but I will wait till I am stable before doing that.

So after my little blip I am doing a lot better

 

[Aura]

HI, I got my results in the mail today:

"Mild duodenits, Mild and localised jejunoileitis with some aphthous uclers, but certainly nothing like the disease seen on the previous WCE. The disease seems to be under adequate control on the current strategy. "

So that be good. I may need to see if I need antibiotics for the duodentis or see if its Crohns based. So it looks like I will be on humira and Aza - until it flares again. So mild disease and no immune system. I guess this is good news??

Does anyone else without an immune system and high rate of infections wear face masks out in public? Everytime I am in public I seem to get another infection.