My story

[Hs86]

Hi my name Helen
I was diagnosed with crohns at 21 I'm now 25
N just been told I need surgery :-(

When first diagnosed I had a camera done n then put on pantasa 20mg x2 a day
N a course of steroids (which blow my size way up n still can't shift it now)
Eveything was goin well till march last year n I ended up in hospital with this horrendous pain in my lower right side,
I couldn't keep anything down m I certainly couldn't stand, so I was rushed to a&e n they admitted me for 5 days
I had test MRI ect plus enough blood test to last a life time,
N they didn't know what it was that was causing the pain n let me go home after 5 days as the pain had subsided,
I still have a little niggle every now n again of the pain.
Anyway my stomach aches n the sick feeling was mostly under control up infill November last year when my stomach pains started to return
So I contacted my chrons nurse n went into c her,
They have sent me for another MRI scan
N since my pain has go unbearable again, (plus I've only been in my new job since November n can't afford to have time off so struggling through the pain at work too)
So I've now been told I need surgery I'm just waiting for the letter to come through to go take to the surgeon to c when it will be,

I'm really nervous about the surgery but i can't go on with the pain anymore.

I'm glad my crohns nurse told me about this forum I've found some really interesting things.
And also it's nice to know I'm not alone n there is someone that understands what I'm goin through.
My friends are like "well u still work n u look just fine so I don't know what ur complaint about it can't be that bad" I only wish I could some how make them understand my pain!!
Just because I don't look poorly dosnt mean on the inside I'm dying in pain
X x

 

[Angrybird]

Hello Helen and :welcome: to the forum. I assume the surgery is because of a stricture? What meds are you on at the moment? Other than the steroids and Pentesa what have you been on previously? Are you on an vitamin supplements? Surgery is daunting but for many it get things to a much better place. My op was done via key hole surgery and it was a lot easier than I thought it was going to be. Have a look at our surgery sub forum as there will be lots of info about this there. It is a shame that people are so ignorant about this disease, the worst is when they try and say it is like IBS.......IDIOTS! Perhaps your friends would like to trail you on a day when you are really having a really bad time (including trips to the loo), that would really open their eyes. The good thing however is at you have found us now and we totally get it

 

[Hs86]

Hi I've been on azathopine but that made me worse so at moment I'm just on pentsa n pain killers,
I don't take vitamins, never been told about anything like that,
Do they help??
X x

 

[Angrybird]

Vitamins are VERY important, it is very common for us crohnies to be deficient in things like B12, D and Folate so please get these checked. I know these are best avoided but has the doc not mentioned steroids to you? These would at least help with any inflammation as the pentesa does not seem to be doing anything.

 

[Hs86]

I will look in to some vitamins thank u,
Been on steroids once before n I'll never go on them again, I ballooned in size with then n still can't shift it now, so I don't want them again I'm big enough as it is n trying to lose the weight from last time
But defo be getting some vitamins,

Also been reading on here about gluton free n soya milk??

 

[Angrybird]

Definetly worth a try, keep a food diary with this and other foods and see how you get on. I know what you mean about the weight issue, steroids ballooned me out 2-3yrs ago and I just couldn't shift it. Due to a 'diet' of stricture op and crohns flare up I have now lost it all again (40lbs). I am on the steroids again but am making sure I do not over eat and am doing some exercises and have even managed to lose another couple of pounds.

 

[Hs86]

Thanks for ur advise I appreciate it a lot x
I'll let u know how I get on wi change of diet, vitamins n with my op too x

 

[Angrybird]

Oh yes, please keep us updated