Gastro Appt - Good un!

[Astra]

Hi Everyone
hope all's well?

I've had my gastro consult today, and it went well.
I'm to stick with the Pentasa and if I feel like I'm flaring, pop some Entocort and Metronidazole, to nip it in the bud, which happened last time. I feel ok now.
Doc is very pleased, bloods normal (aren't they always?) CRP right down to 19.
He checked my bum again, it still hurts, and this time I was prepared!
No abcessess, small hemmie that's all.
Then we talked about Infliximab, I said no
Then we talked about a scope, I said no
He agreed.
He said he's made up that I'm my own advocate, know what I want and how to ask for it, some patients are passive, and don't ask anything.
As a result, he's asked me to go to a Patients Forum at the hospital on Wednesday, to talk to other IBD patients!
Praise indeed!
I asked for the R word, and I got it!
Fingers crossed now it stays a bit longer than 2 months this time!
Much love to you all
Joan xxxxx

 

[xJillx]

That is such wonderful news, Joan! Congrats! And the Patients Forum will be thrilled you came to talk with them. You know your stuff and have such a wonderful attitude. Let us know how it goes.

 

[Crohn's 35]

Good going girl!! So happy you are on an upswing. I am surprised you said no to a scope. :eek2: I know from my past and recent experiences that scopes are needed at least every 2 years.

I agree with the doc on you supporting IBD'ers, you have a wonderful voice and have a certain charm about ya lol. :kiss:

You are my hero, and keep up the good work, oh and no more Hobnobs! :rof:

lotsa love and laughter, Pen:ycool:

 

[Welsh-bird]

:mbh:

Woohoo!! Fan-bloody-tastic!!
Good to hear that the 'R' word certainly does exist (I was having my doubts)!
Now just don't go overdoing it, and messing up all that hard work.
I second Pen- good choice for talking to/with IBD patients. They won't know what hit em!

Loads a love and big hug xx

 

[Ian]

Congratulations!

That's great news, especially getting the 'R' word! Hope it lasts a lifetime.

Out of interest why did you say no to a scope? Are they known to aggravate? I've only ever had 2 (both sigmoidoscopy, never had a colonoscopy as I don't have Crohn's in the small intestine), and both times have been to investigate when I've been unwell (pre-diagnosis and a bad flare last year). I was wondering if I should ask about having them more routinely so as to keep a closer eye on things. Is this not something you'd recommend?

Anyway, really happy to hear your good news! Keep up the good work

 

[Mark63]

Hi Joan,

Glad things went well for you. I'm sure that the other IBD patients will benefit from your experience.

I too had an appointment with GI team in London today, but with no immediate benefit. It's still too close to my last fistula surgery for them to consider ramping-up the drug treatment. They're thinking about going from Humira every 2 weeks to weekly or perhaps throwing MTX into the pot as well. They want to see what the Surgeons say next month as they suspect that there is still some cutting to do. So we have to wait and see if surgery No. 11 is on the cards - I get frequent flier miles. Back to the GI's in 2 months for another review.

Had more bloods taken to try and work out why I'm tired all the time. It would be nice not to have a cold/bug on a weekly basis. The Humira is certainly doing a good job of supressing my immune system, so it will be interesting to see how I will get on at twice the dose!

Keep well!

Mark

 

[bushydougie]

Great news Joan. I'm so pleased for you. It's always makes me feel great when I have a good appointment so you must be buzzing!!
Well done for sticking up for yourself too and saying what you want. I don't know where I'd be now if I'd never asked to be put on pred. Probably still confined to my house!
Hope you continue to feel well
x

 

[Cat-a-Tonic]

Congrats Joan! I hope the "R" word sticks around for you a lot longer this time! I'm off the Entocort too and doing well so far, I see my GI on Thursday and I'm hoping he tells me some good news too. Hopefully neither of us will have to pop any more Entocort for a long time!

 

[Astra]

Hiya all!

Thank you Jill, Ian & Sam

Well to elaborate a bit more, we talked about a scope and I declined because I have no symptoms at the mo, and wouldn't hesitate to have one if I became ill again. I realise that this disease progresses and would certainly recommend one, but I don't think it warrants one at this present time.
We talked about how I 'flared' back in Jan, and how quickly the Entocort took hold, therefore it's a possibility that I had picked up a stomach bug, dunno.
We talked about Infliximab, but I want to save this biggie for the future, and also I would prefer Humira rather than Infliximab, but it's there, ready for when I need it, which is good news.

Good Luck Mark at your next appt, fingers crossed xxx

HUGE good luck to my pal Cat, here's to us not popping any Entocort for a long time to come! stay well xxxx

Andrea my mate, I promise to be a good girl, boring and well behaved! Thanks! xxx

Pen, my mate, my hero too! Thanks, but I'm afraid HobNobs are NOT off the menu! xxx

 

[ameslouise]

Joan - I am thrilled for you! You are always there for all of us with support and kind words; the Big R couldn't have happened to a better person!

Stay well - xo xo - Amy

 

[Astra]

Thank you Amy!

Now we've gotta get you well girl!
Hope you're feeling much brighter to match your lovely face!
xxx

 

[Dexky]

He checked my bum again, it still hurts, and this time I was prepared!

Assumed the position again Joan?? Glad to hear it's all going well with you!! Hope it stays that way for yonks!! What the hell does that mean anyway??

 

[DustyKat]

What does what mean Dex??? Assume the position?? :rof:

Woohoo Joan, that is just the best and most fabulous news.

:banana::banana::banana::banana::banana::banana:

:emot-dance::emot-dance::emot-dance::emot-dance::emot-dance::emot-dance:

:applause::applause::applause::applause::applause::applause:

Congrats on the talk! But I reckon I should be there to monitor it though!utahere:

:mademyday:

Dusty.

 

[Dexky]

YONKS?????

I remember the position!! I shall cherish that image of Joanie.

 

[DustyKat]

Haha, knew you would bite!

Yonks??? Ya don't know what yonks means??? It means a long time..........:yrolleyes:

Dusty.

 

[sawdust]

Great news! anda:

And the Patients' Forum is a fantastic opportunity! If you can encourage and help patients at your local hospital as well as you do around here, they're very lucky to have you! Good job.

 

[Astra]

Thank you sawdust, Mark and Dusty

I will report back on the patients forum, don't know what to expect, wish you could be with me Dusty!
I did resume the position but asked first, he laughed, and I died! I slipped my jeans off very gingerly and with caution!

Yonks comes from donkey's years, onk with a y in front, meaning a long time!

I hope I stay well for yonks too!

xxxxxxxx

 

[littlemissh]

Great news Joan, heres hoping not only will you stay in remission but also you can avoid baring your bum to all and sundry for a long while too! When do you have to see him again? Hopefully a nice long gap!

 

[Rebecca85]

Great news Joan, heres hoping not only will you stay in remission but also you can avoid baring your bum to all and sundry for a long while too!

Maybe Joan likes baring her bum, she seems to do it often enough!

Fantastic news Joan, are you keeping up with your resolution of not stressing? Cos it seems to be working!

 

[Astra]

Aw Thanks

Don't have to go now til August all being well, and no-one's seeing me arse til then, lol
xxx

 

[littlemissh]

We could have photos of our bums rather than our faces as our profile pictures. Can you imagine what any newcomers would think
Of that....they'd all be scared off but it would be hilarious.

 

[Rebecca85]

Facebook campaign! never mind posting cartoon pictures for charity, what about bums for Crohn's awareness?

 

[Rebecca85]

Or one of those one word thingies, like 'peachy' or 'well-padded' (or 'sore' lol)

 

[littlemissh]

Scrawny.. Stinky...wrinkly...

 

[sawdust]

Cracked...

 

[Astra]

NOOOOOOOOOOOOOOOOOOOO
someone might try to park their bike in mine!

Hiya Rebecca
I'm so laid back, I'm horizontal! No-one is ever gonna stress me out ever again, or else!
I'm off this week catching up with Jeremy Kyle! The peeps on there make my issues pale into insignificance!
Hey, enjoy your half term too
xxx

 

[Rebecca85]

I don't start mine till tomorrow lunch

 

[StarGirrrrl]

Just out of interest in the past has your CRP been alot higher than 19? Because i've been in low to mid 20's for 5 years now and my GI counts that as high.

It's hard to read these things when it seems every other Dr has a different opinion on CRP! I have 3 from 3 different Dr's lol.

So glad things are going well for you! I totally agree where you are coming from with the scope. Just because something is recommended every x number of years doesn't mean you have to do it, especially when all the other signs are so good.

 

[Guest]

i'm a bit late, as per usual, but i just wanted to say congrats on the really encouraging appointment, Joan! it really is good news, and i'm delighted to hear you sounding so happy and in control

just a thought for the sore bum issue... if nothing else works, ask your doc if you can try Fucibet - it's antibiotic and cortisone - works wonders

 

[Astra]

Hiya and thanks

I've got some Fusidin, same thing, same ingredients, so I'll try that, thanks
xxx

 

[Astra]

Hiya Star

considering my CRP was 261 this time last year, I'm delighted it's only 19 now!
19 is still quite high really, anything from 5-10 is considered normal
6 months ago my CRP was 30, so it's come down since then

hope you're doing ok?
xxx

 

[Dras]

Thats fantastic news Joan!!! Thank you so much for making my day!!!

 

[Astra]

Aw thank you Simone

and I hope you're doing ok these days?
xxxx

 

[StarGirrrrl]

Hi Astra, wow I can see why you are so pleased with your current CRP level.

Not doing great myself thanks but called into see Consultant next week following a Barium Meal so keep your fingers crossed for me that I get diagnosed!

Even when my WBC scan came back positive @ Rheumatology I didn't find out until months later.

 

[Astra]

I will defo keep everythin crossed for you Star!
Good luck
xxx

 

[dreamintwilight]

I'm late in seeing this thread too, but congrats Joan! Such great news to hear

 

[Jennjenn]

I am late in seeing this also ......But I am sooooooo happy for you :thumright: :ybiggrin: That is great news!!!! I hope that the "R" word !! stays for good!!!