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A bit scared

So, about three weeks since Round 3? Also coincided with losing the Pred which I am very happy about, after 6 months of it, but also a little wary as it feels a bit like walking the tightrope without the net.
Tummy, bladder wise good at first. A couple of weeks after the infusion, a fair bit of joint pain, especially in hips and knees. And an acne like rash on my chest.
But last night I almost called NHS24 ( like 911 for those non UK. ) Crippling stomach pains, so I'm trying to figure is it:
A) Crohn's related
B) Meds related
C) Food related ( had seafood for lunch )
I managed to drift off to sleep at 4am and was recovered enough to go to work today. Keeping an eye on things.
I had a GI appointment for the end of this month, but it was rescheduled for mid December due to unforeseen circumstances. It's a bit confusing: I see the GI who comes here, but I'm also a patient of the GI on the mainland who prescribed the Infliximab.
 
Hi Helen.
Not so good. Hope things start to settle down for you soon. I am up and down at the moment but reluctant to try any new meds. I am finding I get cramps, bloated, wind etc when I eat what I like or what others prepare for me although think your answer is prob ALL 3. Seafood should be ok - I bet its nice and fresh where you are.

Take care
 
When are you due your next Remi Helen! I hope it's just a passing thing and you can hold on til then. Rashes and joint pain sure sounds like a crohnie thing though:(
 
Yea, I guess it could be a wee bit of a flare. If I am to have another infusion, it would be in about 5 weeks I guess, as I've done the second after two weeks and the third after four. Not heard from hospital yet about the tests they are going to do.
Hah I blame everything on the Crohn's or the meds - including the stone and a half I've put on!
 
Hey Helen,

Sorry to have missed this Helen!

How are things now, have things settled at all?

Dusty. xxx
 
Yes, thanks, Dusty- they have. Guess the tummy pain might have been a bad prawn or sumfin! The rash is only a little patch and not spreading and the joint pain comes and goes. It's actually better when I'm on the move, so I'm gonna get my ass into gear today and print off David's yoga class stuff.
Thanks, folks. Hope all is well with you and yours xxx
 
Did I just hear the 'R' word??

Saw the Stornoway consultant yesterday. For some reason, the Inverness docs have not copied him in on the letters regarding my current treatment which go to the GP surgery. Bit naughty really.
Anyway, he was happy with how things panned out AND said my bloods are very good: CRP is bog standard normal :) When he was dictating his notes, he used the words 'a good remission.'
Dare I believe it? Still no word from Inverness re: another scope, or infusion.
We'll see. I am feeling well so here's hoping.
 
Squeal!!!

Oh my goodness! I so hope this is the case Helen! I will keep everything crossed to ensure that it is indeed true...

:goodluck::goodluck::goodluck:

:mademyday:......:heart::heart::heart:
Dusty. xxxxxxxx
 
I hope you feel well so long you forget what it feels like otherwise:) I'm happy for you Helen!!
 
Been a while, huh? :) Still feeling good and off to Inverness on 7th Feb for the promised colonoscopy to check progress. They've sent me the Picolax here. They just don't get it. The instructions say 'stay near a toilet ' after taking it so how do they think I'm going to make it over there? In nappies?
Anyway, I've emailed the IBD nurse. Better to go over the day before, stay in the patient accommodation which is 5 minutes walk to the hospital and do the prep there.
Might also have to take someone with me as they say you have to but it's a lot to ask when it's not just a couple of hours. I'd probably be better off just getting admitted.
 
:):):) So fab to hear that all is going well Grumble! :):):)

Hmmm, I could always send you some of our limited edition Australia Day nappies...I know you've been eyeing them off! :shifty-t: Isn't the tyranny of distance just lovely...NOT! :yfrown:

I so hope the scope reflects the way you are feeling hun, sending loads of love, luck and well wishes!...:goodluck:

Much love, :heart:
Dusty. xxxxxxxx
 
Fingers and intestines crossed that everything looks pristine in there. Then you can be 'proud of your bowel'.
And a bit of mainland shopping as a treat?
 
Yes, retail therapy definitely in order, Picolax permitting. I would so love to turn up for the test in one of them nappies. I think I'll also learn your national anthem, Dusty, so I can belt it out under sedation!
 
Ahahaha, sounds like a plan to me! Provided they don't schedule you!...:ybatty:

Dusty. :)
 
I hope you get to enjoy some of your mainland stay Helen. I don't suppose the weather is likely to be much better though. Go get your "all clear" scope and let us know!!
 
Right, all organised I think. Flying out tomorrow with my friend. Supposed to take the prep before breakfast, but I ain't risking it, so will eat light and take it when I get there. No flights to Inverness on a Saturday or Sunday unfortunately. And not wanting to abandon DS, Dan, for too long as he starts his preliminary exams tomorrow.
I love living here, but sometimes getting on and off the island can be real pain..... Especially when you throw Picolax into the mix!
 
Hope all goes well for you Helen. The joys of picolax ehh!
From memory the picolax didn't work straight away with me but when it did.... omg you don't want to be far from a toilet!

Wise move I think.
 
Good luck Helen! Everything crossed that all is pink and looking marvellous!...:goodluck:

Have a safe trip, :heart:
Dusty. xxxxxxxx
 
Good luck Helen!!! Hope you have a shiney happy colon in there!!! (and a nice toilet)
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Lol, thanks folks. Booked single ensuite rooms in a guesthouse as the patient accommodation is four rooms sharing a bathroom so I don't think my 'roomies' woul thank me for hogging the loo and banging about in the night!
 
Oooh, yeah, that could be bad!! Good luck Helen! Looking forward to a good report when you get the results!
 
Most considerate of you Helen!

Perhaps I should send Sarah to you for etiquette lessons! :biggrin: She had the use of a priavte toilet at school but preferred to use the public ones, where upon completion she would proudly announce to all those who cared to listen...I wouldn't go in there if I were you, I have a bowel disease! :lol:

Dusty. :)
 
DustyKat said:
Most considerate of you Helen!

Perhaps I should send Sarah to you for etiquette lessons! :biggrin: She had the use of a priavte toilet at school but preferred to use the public ones, where upon completion she would proudly announce to all those who cared to listen...I wouldn't go in there if I were you, I have a bowel disease! :lol:

Dusty. :)
Click to expand...

Lol@ Sarah, and good for her. I'm not really being considerate. I'm just scared of pooping in my PJs if shared bathroom is busy :rof:
 
How ya doing? Not sure what time your colon peek is but hope it goes well tomorrow.

ps @Dusty, Sarah sounds like a real feisty young lady...good on her!
 
:rosette1: Thank you. Setting off for hospital in half an hour. How you get little kids to cope with all this, I will never know. Poor babies :-(
 
Hi, cross-posting here, but hope the immunologics are working well for you. Thanks for all the lovely messages btw. So best wishes to you from one end of the country to the other!
 

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