Crohns

[paulrae]

Thanks Clare... when we went last year had only 1 or 2 bad "Crohns" day as we call them...Never knew then that Disney would help with lines etc...hope the letter i have will be good enough

[Guest]

I had my op in April, having both sides of the colon removed. A sort of double hemi colectomy. Well, in the past few days ive been flaring quite badly . Also getting a lot of very sharp stabbing pains in the fright join. Fingers crossed for me that its just a "Blip".
Paul, I hadnt even consisered really the thought of getting a GAC. I think it may come in useful. How can it benefit us Crohnies?

Lisa x

[Clare]

Sorry to hear you're not so good Lisa - there's a really nasty gastric bug going around at the mo - I've had 2 visits to the local hospital A&E in the last 48 hours due to the 'gastric bug' causing my UC to flare up. Thankfully IV steriods and antibiotics seem to be helping.

[paulrae]

Lisa...helps with standing in long lines and it might help with keeping out of the sun ..keep your energy levels up..easy "get out line if you need to go"

I think

[Heather1957]

Lisa can you imagine standing in line for 45 mins + and just as you reach the front you have to 'go'! And as I know from my friends when she says her stomach is 'cramping' she HAS to find a loo!

If this card helps cut the lines it's a must - I'm lucky enough to be fit and able enough to queue and I certainly don't begrudge those who may have some problems.

Hope you're feeling a little better Lisa, I hope it's a non crohns related problem.

[Sindysam]

I too have tried the gloopy stuff called Questran but I am allergic to it, it causes me to poo acid like diarreoh (sorry vile I know) I started on Colestid which is similar after my last flare but I actually can't swollow it before I throw up and the sachets I have managed to get dwon have again cause acid motions grrrrrrrrrr.
I have vitamin B12 12 weekly but not sure its enough and am going to ask if I can have it more often?
Am having a major flare at the mo needing the loo up to 20 times a day and am thinking that I will ring the airline closer to the time and ask to be seated near the loos and board first.
Not sure about the GAC as think it will be embarassing (and i thought i was past the embarassment? ).
Also as I don't look that ill then don't want to appear like I am trying it on, but on the other hand don't want to queue for half an hour get to the front then have to run to the loo!:angry:
The joys of Crohns eh!

[paulrae]

I could send you the text that Val "Cinders Mum" did for me...it may help with the "embarassment" factor...I know I'll be using it.

Why do you need B12 weekly? horrid injection..I only have it 3 monthly. I really hope you feel better very soon

I think Iam having a flare up as I have lost another 1/2 stone..down to 10.5 stone.

I haven't had the same appetite since the op in March..I get a full feeling very quick and I feel sick most days...

Guess what I had in the post Friday ...My appointment for a Colonoscopy 6th Aug...Hate this illness

[Sindysam]

That would be good Paul send me anything you got please.
I don't have B12 weekly I have it 12 weekly, but I don't think that is enough as I don't feel any benefit from it.
Good luck with the colonoscopy mine was suposed to be today but the unit has had to shut for a few weeks so awaiting a new appointment anyday now.
I hope you are not flaring it always seems worse in the summer, I am having one now its one of the worse I have ever had.
Fell better soon.
Sam x

[paulrae]

Originally Posted by Sindysam

That would be good Paul send me anything you got please.
I don't have B12 weekly I have it 12 weekly, but I don't think that is enough as I don't feel any benefit from it.
Good luck with the colonoscopy mine was suposed to be today but the unit has had to shut for a few weeks so awaiting a new appointment anyday now.
I hope you are not flaring it always seems worse in the summer, I am having one now its one of the worse I have ever had.
Fell better soon.
Sam x

See more...

Sam poor you why is it I can deal with my own illnesss but when we read about some elses problems it gets me quite upset..must be getting soft in my old age!

Unsure if I have a flare up ..just feeling sick all the time so not eating anywhere like the amount I was hence weight loss...Do you think it's a flare up then?...I very new to Crohns...

I have managed to raise just over £1100 since I was diagnosed ...Charged £1 for entry to work and a charity jumble sale...given the monies to Winchester Hospital and the NACC...

bit like Tesco's really!

Every little helps...so sorry bad joke

But the sooner they get a cure the better...thinking of our kids now!...seems they have a link with type1 diabetes and crohns (very similar) so it's looking good for the future.

PM me Sam with your email address and I'll send it you no problem...it may need tweaking for your own needs..

thinking of you Sam and sending you loads of hugs
Speak soon
Paul

[Sindysam]

Thanks Paul, would not like to say if you are in a flare as everyone is different. I will PM you a name of a brilliant Crohns website that i rely on quite a bit too.
Well done for raising the money, and its so true every little helps.
I am feeling a little better today so fingers crossed I am coming through the other side.
Crohns is linked to many many different diseases the list is endless.
Thanks again
Sam x