Crohn's Disease Forum » Your Story » Adivice :-D &/help


12-27-2012, 05:04 PM   #1
Kikidee 94
 
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Adivice :-D &/help

Hey guys my name is Ciara
Since the age of 15 am now 18 have had terrible time with my belly itís took me 5 Yeats just to get the hospital to do a endoscopy to see whatís going on with me as all the doctors I have seen told me it was all in my head great!!=(
Iím due to have my 31th of December
They think I may have crohns disease and celiac disease as my flare up atre ever two weeks if Iím lucky I my have one good week in a month.
Iíve lost 3/12 stone in 12 weeks due to this very bad flare up
When Iím having flare ups food hates me whatever I eat its up striagth after
My sympots are cracked bleeding lips , pressure behind my eyes get very bad diorea with blood in ,get terrible pains in my knees and other joints
I get massive ulcurs in my mouth which pop and bleed I sleep so much when Iím in pain Iím always tierd I did find that theatre ate so many different foods that I canít say like vegetables,bread, chocolate, beans,the list goes on and I CNT drink any soda pop of juices Iím just drinking water
Iím missing a lot of time from college as Iím a hairdresser I really canít afford time off
I also wear heat pactchs on my kneees because they kill me and I fond that I nice boiling hot bath hepls to relax me for a bit and hot water bottles help to but the pain Iím in with this kills me
Iíve heard a lot of people saying to Me that have crohns disease not yo take the steroid tablets as the mess your body up after a bit , I live in the UK England I would love it if somebody could give me advice on what to do and how to push or more help of my GP and HOSPITAL
Thank you for helping if you ca
12-27-2012, 05:34 PM   #2
spencer2012
 
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ok first of all hi. sorry to hear of your predicament. unfortunately there is no way to push your specialists in a particular direction although most of us would have loved that option. if you are diagnosed with crohns then please dont listen to the "plastic professionals", what would they know. yes steroids over a very prolonged period COULD cause osteoperosis (weakening of the bones), it can be countered effectively with things like ADCAL. steroids are an extremely versatile and effective drug and for inflamation caused by crohns they can be imperative. besides these will only be administered for short courses as and when needed. all the best, spencer
12-27-2012, 05:48 PM   #3
Kikidee 94
 
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Hey spenner thanks for you help if I was to have crohns would it be okay to pick your brains about a few things
Thanks for replying :-)
12-27-2012, 05:57 PM   #4
SarahBear
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Hi, Ciara!

They're thinking both Crohn's and Celiac's at this point? The two have very similar symptoms, and can occur together, but hopefully it's only one or the other (or something else that's easier to deal with).

Are you just having the endoscopy? A colonoscopy would usually be more useful (but having both done at once is even better).

Steroids are usually used to reduce inflammation so that your body can start absorbing nutrients again. They're typically only used to get a flare under control, and in that situation you're likely to be on them a few weeks to a few months. Spencer2012 is right, they can lead to osteoporosis (but so can untreated Crohn's); calcium supplements help with that. A lot of people do have side effects while on steroids, but you shouldn't worry about that - it's usually nothing compared to how you're feeling now.

Hopefully someone else will drop in with some more information about your health care system.
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Diagnosed with Crohn's disease 12/6/08.
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12-27-2012, 05:59 PM   #5
Kikidee 94
 
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I'm not sure on what its called but my mom said its a camra up my bum
12-27-2012, 06:00 PM   #6
SarahBear
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That's a colonoscopy or a sigmoidoscopy. That's good. Don't worry about that, they give you medication and it shouldn't hurt - you might not even remember it afterwards.
12-27-2012, 06:06 PM   #7
spencer2012
 
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you will be sedated for that proceedure and although maybe not the desirable proceedure it is possibly the quickest and most effective way of diagnosing lower obstructions or narrowing.
12-28-2012, 03:07 AM   #8
heatherb
 
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Hi

I'm originally from the UK - my mum is actually having a colonoscopy on 14th January and my dad had one over there maybe 6 years ago.

I'm just trying to think what you can do in the meantime regarding your situation. I'm having bloods done tomorrow - have you had any blood tests and if so what have you been tested for? And is your GP going to refer you to a GI specialist?

I know you said you're having real trouble eating - if this is the case that it's really bad, you could ask your GP to prescribe you fortisip/juice/creme in the UK. These are small in volume but big in nutrients. I know my dad relied on them for a while. Fortisip are actually quite nice - I've a few dotted in my fridge! If it's not possible to get these prescribed or your GP is reluctant, there's also brands you can get in the pharmacy (although ideally if they're prescribed you'll get a hell of a lot more for your Px charge). If you're having really bad diarrhea then things like dioralyte from the pharmacy are also good at replacing electrolytes and 'upping' your energy level. You lose lots of salts and sugars when you're dashing to the loo that often. In the UK I used to let Lucozade go flat (shake it like crazy and let it sit) and that gave me a bit of get-go for college.

Like I said I'm new to this in terms of the diagnostic procedures, but perhaps keeping a diary of symptoms and what you ate that particular day - together with your pain level and where it's located plus any peripheral symptoms would help your doctor pushing forward.

I really hope you're able to start getting some help... sorry for the long post!

Heather
12-28-2012, 01:26 PM   #9
kikidee1994
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Hey heather I've forgotten my password so this is my new account !
I've got two of the fortisip drinks and had a bit of one but they fill you up so quickly but I've managed to keep it down so that's a start
My colonospy is this Monday so hopefully it will give me some answers
I've only had blood tests for celiac disease but they came back k inconclusive All the times I have been to my gp they have said its all in my head but I went to see a specialist and he said it sounds just like crohns so I'm stuck in the middle but hopefully I will get some answers
Thank you for your advice it has really helped :-)
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