New to this, but advice would be great if possible.

new to this, but advice would be great if possible.

hi,

i hope i am doing this right. but i have been ill for a long time, in particular the last year, i have had a lot of problems lately, in particular mouth ulcers, pernecious anaemia and pains in my stomach area.

i have been repeatedly going to my dr for over a year asking about this and keep getting told different things, but recently one doctor has been my rock, and has pushed me through to getting a diagnosis.

i am told they are 99.9% its Crohn's disease, and now im quite lost. i have got books, ask people questions all the time, but still feel i have a lot to learn.

would it be possible to list my symptoms and maybe get a response if other people have the same or similar? im really lost at the moment and would love some help.

and would also love to meet some new people.

thanks

Kat.

Hiya Kat
and welcome

yeah go ahead, list them, we're all here to help you.
Also, pop over to the Undiagnosed Club, lots of peeps just like you.
Lotsa luv
Joan xxx

Hey Joan

thanks a lot for your reply, i hope your doing ok?

right where shall i begin:

stomach pains, cramping and stabbing pains,
running to the loo etc... as well as not being able to go.
bleeding and mucus? not all that often.

mouth ulcers, bleeding gums and burning gums.
painful tongue, ulcers on tongue.

waves of pains around my chest ( osophogas area)
blocked and painful sinus's daily
weepy and swollen eyes

bruises everywhere
nauseous all the time
weight loss

tiredness
waking up in the night due to pains

i have been admitted to hospital but they didnt rush to do much, i have a colonoscopy and the camera down my throat due the end of may.

i have noticed i am not able to tolerate fruit, especially smoothies.

just feel like it is a constant battle, especially with work.

any ideas? sounds like a lot of babble by my dr says its all related to crohns? anyone had anything similar?

All of the things you have said can be linked to crohns I'm always learning new things that can crop up with crohns disease. When I'm in a flare I get the blood, mucus, tiredness, ulcers in mouth and up my nose, i also get arthritis and many other things that change all the time, he list keeps on growing.All of these things could be due to some sort of Ibd hopefully you will get some answers after your scope and start feeling better x

Hiya Kat

Yeah sounds a lot like an IBD with all the extra intestinal manifestations that go with it!
A colonoscopy's a good idea, hope you get a firm diagnosis with it.
Hopefully your doc will do a full blood work, including CRP, (these are inflammation markers)
UE, (this checks your urine and electrolytes)
Vitamin B12 and Folate (some of us Crohnies are deficient)
Ferritin (to check for anaemia) and bloods to check your liver function too.
Good luck with your scope, and have a good mooch round the forum, loads of info.
xxx

heya Kayleigh

thanks you for getting back to me, as much as i hate hearing that it is linked with Crohns its really nice to hear that there is a possibility that it can be diagnosed soon enough.

thing is it feel like it has come out of nowhere, i know its not true as i have been on and off ill for years now, but certainly in the last 12 months my life has changed dramatically.

its almost like i can tell when i am due to flare by the minor ailments appearing.

do you tend to flare up alot? also, have you found that being diagnosed helps you to deal with it? i honestly break into tears after every hospital and dr appt just because it feel like im getting closer to a diagnosis but then its all taken back again.

sorry to rant on, once again thanks for replying and i hope you are well?

hey astra

thanks very much for getting back to me too, i forgot to mention that i am b12 and folate deficient causing the anaemia.

the b12 jabs are horrible and painful.
i did have a blood test a few weeks back that showed my inflamatory markers to be higher too, but then my hospital dr said they just think its IBS? do you think this could be possible?

ahh! its just so frustrating, did you go through all this?

once again thank you

You have Crohn's Disease. It is absolutely positively not IBS. If a doctor says as much, walk out as they have no idea what they're talking about.

And Astra nailed all the recommendations. I know that the B12 jabs are painful but it's absolutely imperative that you get those levels up.

Welcome to the forum by the way. I wish you all the best

Kat, been there, done that, for 20 years!
IBS, it stands for It's Bull Shit!
YOU DO NOT BLEED OR LOSE WEIGHT WITH IBS!!
Bin your doc and find another if it comes back as IBS.

http://ibdcrohns.about.com/cs/ibs/a/diffibsibd.htm

Hi David,

Straight to the point! That's just what I need. Many thanks for that put a smile on my face I hope you are well. I am keeping up with all the tablets and jabs, I'll be rattling soon!

Also Astra,
That's what I thought, that website is brilliant. I will be sure to show my dr and work the differences. 20 years! Wow, can I ask how you dealt with it all? Was your job quite helpful? I find mine stresses me out more.

Thank you all for your kind words. Feel happier already. Lovely to meet you all.

I have only been diagnosed for about 3 years now but in that time I have had a quiet a few flares and have just got out of another recently that started at the end of last year. But I think the only reason I flare a lot if that I havn had a lot of sucsess with medicines I seem to be allergic to a lot of them. So far I have been doing ok on methotrexate which is what I am now but still have good days and bad days. I was relieved when I was diagnosed my family think I have always had crohns as I had problems from a child but only got really bad when I was 17/18. It's so much easier to deal with now I think it does take a while to accept there is something wrong and when you get a diagnosis there is relief but worry as well but that passes. I still do have the odd breakdown in the doctors office but I think that is completely normal for anyone who has to deal with a life long illness but I can deal with all of my emotions a lot better now. x

My job is soooooooooooo stressful, I work with autistic teenagers, say no more!
I've been fighting with my bosses for a few years over my illness, I've won my case now, I have reasonable adjustments put in place such as regular toilet breaks and access to toilets at all times, especially if I'm off site. (or I refuse to go out)

We can chat more tomorro, me eyes are melting!
ZZzzzzzzzzzzzz

Hello Kat, and welcome to the forum. I agree with David and Astra. I was told ibs, and tummy bug by gp, for a while. After an X-ray in emergency showed full obstruction, I finally got referal to my GI. Sounds like crohns I'm sorry to say, like David said, look for a new doctor. It comes with soooooo many extra intestinal manifestations. Best wishes, and keep us posted on your diagnosis. Xoxo

Heya,

How is everyone? Sorry I haven't got back to anyone in a few days been a really rough few days.
I have now been put on a 5 day steroid treatment which I feel has helped. But work aren't exactly helping so I have been stressing and worrying.

How is everyone else?
I was just wondering how long after diagnosis it takes to get your life back on track? As im considering looking at part time work rather than full time? Is this a good idea do you think?

Thanks
Kat

Hi Kat,

A five day steroid treatment? What dose did they put you on?

Sorry you've had a rough few days

I'm on a 5 day treatment of 5mg prednisone. 8 tablets once a day? Does that sound about right? Its helped my nose, I can actually breath and it's made me actually want to eat which helps.

Not sure on the stomach as still getting the pains but it's not as crippling as it was.

How have you been? Good weekend?

Eight tablets for 5mg? What is the dosage of each tablet, do you know?

What did they prescribe the prednisone for specifically? I assume not for your intestinal issues but something else?

Well it's 8 tabs of 5mg so its a 40mg dose.

They said its to try help my stomach and my nose as I'm constantly unable to breath through my nose. But I'm only on a limited time because they can't put me on anything until the scopes.

Ah, I see That makes more sense, sorry about that.

I'm glad it's making you feel a bit better!

KatAttak said:

Well it's 8 tabs of 5mg so its a 40mg dose.

Click to expand...

40mg for 5 days and that's it? Why aren't they tapering you? Isn't that dangerous?

I thought that myself? But I suppose maybe they are doing it to see the outcome?

I finish tomorrow and see my dr on Thursday? So hopefully get a few answers then.

I've heard it's dangerous, how is it though? Is it the shock to the system or because it's addictive?

Short doses of corticosteroids like Prednisone don't typically require a taper because the adrenal glands haven't been suppressed. It's when you're on a longer term dose and the glands aren't making their own corticosteroids that tapering is critical.

Still watch out for withdrawal symptoms though, just in case. Although I expect if you do have any it would probably only last a day or so. Good luck with the scopes!

Hey All,

thanks for all the advice, cant wait to find out what this is now.

how is everyone else?

can i be cheeky and see what peoples opinions are about working and hours? id love to go back to work, but my dr doesnt want me to go back full time. what did everyone else do?

thanks again

Kat, if you don't get any or as many answers to that as you like, you're welcome to start a new thread asking about it. I'm sure you'd get more answers then.