Updates...

[evescott]

Hello to all you lovely people, I hope you're well.

So, an update, I had my MRI for my pelvis & another for my small bowel, which I'm sure you all know, isn't a fun time with the dreaded drink & heart fluttering contrast injection.

So that was Wednesday. I was back up at the hospital today to see more of the absolutely fantastic team who look after me, the stoma nurses, just to try and get something that'll care for my ulcers/pyoderma/who knows next to my stoma. Upon showing them my ulcers, we've come to notice my stoma itself is ulcerated and unhealthy, a seemingly worrying sign that my crohns has spread even though my diseased colon was removed

The lovely ladies gave me so many stickys and other products to keep me secure and the skin as healthy as possible.

Meanwhile I await results anxiously, I won't hear a word til Monday!
If it has spread & badly, I'm concerned none of the drugs will hit it like last time & at 19 and already down a colon, I'm considering looking into clinical trials as if it carries on like this I won't have much to lose!

Anyway still staying positive and pushing forward!

X

 

[AuntieEm]

I hope you get positive news tomorrow.

 

[Basmah]

How are you doing? Yes, keep having a positive outlook - it will get you very far. Just remember we're always here for ya too

 

[evescott]

Hi guys!

So I've heard nothing which leaves me thinking perhaps they want to tell me in person. I've started feeling really poorly now, nausea, loss of appetite, stomach pain & my stoma is sore as the actual stoma itself is now ulcerated! I can pretty much gather from this that the Crohn's is back!

I'm seeing my gastro team Tuesday next week & my surgeons Friday the same week so I think I'll start pushing for some words on stem cell treatment as if they continue to cut bits off, what'll I have left before we're through?!

It's a touch disheartening that after everything, it's back, but this time I'm determined to nip it in the bud!

Thank you for all your lovely support!

 

[Traumanurse]

What a positive attitude you have!

Good for you. I think I will try to learn from that. Please let us know how it goes when you talk with the Docs. Are you hoping to find meds that will work for this flare? Wonder what the plan will be.

 

[evescott]

Thank you so much for saying that! PMA has got me through the whole time for sure! That & chocolate anyway.

I'm not sure you see as I've never been in remission even though I've tried the full resume of drugs previously! They're thinking of trying me on some of the newer ones, thankfully for me the hospital is a prestigious research hospital so I have my heart set a little on a trial or stem cells, particularly if this IS a flare of the small bowel which has previously been totally healthy! It may be more manageable now my colon has gone but the though that it's moved already worries me as I've been here before, you know?

Secretly hoping this is a late onset surgical complication, even though in my heart of hearts I know it's not!

Will keep you all updated & thank you for your amazing support as ever!

 

[badbelly]

It's nice to see someone staying so positive even when facing so much. I really hope the doctors can find a treatment that will work good for you soon! Or that there is an alternate treatment or trial that will work.

 

[Traumanurse]

So, what did the Docs have to say? What's the plan?

 

[evescott]

Hey all!

So my appointment Tuesday led to me being admitted straight away for treatment.
I was having IV antibiotics for the stoma infection, which has spread all the way round deep into the skin. Was also on IV iron as a top up as I was a little low.

Had an ultrasound which showed no abscesses or collections so that was a blessing but that left it down to pure Crohn's causing all this.
The surgeons/gastros/radiologists meeting was Friday morning and they decided the inflammation in the small bowel needed immediate treating, despite pending surgery.

And so I gave my 4 injections of Humira on Friday, came home with two & will continue from there alongside azathioprine. I still await surgery for both the reconstruction from my panproctocolectomy and now my stoma will eventually need to be re-sited, just not yet as I'm too poorly.

I'm seriously hoping Humira is my wonder drug & I don't lose response like with everything else. It's a bit disheartening that after everything I've been through, I'm here back at square one. Although I think that being a bit older & wiser now, I won't skip my meds cos they make me feel icky, won't cheat & will tell the doctors the gospel truth when I see them, which should make all the difference.

Anyway home now, own bed, good food & managing pain!