Newbie and after some help

[StaceyQ]

Hey everyone new to this forum, woulkd have signed up along time ago if knew about it, anyway hi.

After a bit fo advice really.

Here we go

i had my first child in 2009 and became poorly three weeks after, after numerour of tests they diganoised me with crohns disease in september 2009, put me on predisolone adn everythign evened it self out.

I had my second child in jan this year and has quite a rough pregnancy with consultant appt every month. After having her i was due to have a consultant appointment in feb which got put back through the hospital several time. I ended up seeing a consultant in May. I had been experiecning pain for about a month before i saw the consultant but coudl enver get an appointment.

Two days after seeing the consultant i was admitted to hospital for a week to IV steriods. Then discharged with predisolone, 40g a day. Still in a bit of pain but nothing compared to what it was. When the dosage got down to 20g a day the pain was hard to deal with so my doctor increased my predisolone back to 40g. My consultant has talked about putting me ont he next stage tablets, I am currently on 8 pentasa a day. Not really to sure what this means but they want me to have an ultrasound and a colonoscopy first.

I have had my ultrasound today and the person who did it went to get a consultant and the consulatant said my smaell intentine was abnormal and thick and he would send a report to my consultant!! Now i am worried as not sure what this means!

WHen i was in hospital they did a flexi but they said everything looked normal.

I am so unhappy, how can someone say that and then not explain what they mean.

My consultant is not due to see me until after i have my colonoscopy and that could be up to 8 weeks, i cant wait that long, what should i do.

Very worried and going out of my mined, any advice would be appreciated or doctors advice as to what the consultant could mean

 

[DustyKat]

Hi Stacey and :welcome:

So sorry to hear you are having a hard time...

It is fab you have found your way here though 'cause it is a great place for support and info.

Pentasa is an anti inflammatory. The next step up from that as far as tablets go would normally be what they call immune system suppessors...Azathioprine (Imuran) and Mercaptopurine (Purinethol).

I know your worried hun but the way your small bowel looked on the ultrasound is what is very often seen in someone with Crohns, it was the way my son's small bowel looked. It means you have inflammation present and that is what makes the bowel look thickened.

Is there any way to get a colonoscopy done sooner? Could you contact the GI and see he if can push things ahead for you? That is a long wait if you are experiencing pain and other symptoms.

Good luck hun and keep us posted. Welcome aboard!

Take care...:hug:
Dusty. xxxxxxxx

 

[StaceyQ]

thanks

I have left a messgae with the senior nurse to see if they can bring it forward, will a colonoscopy shown the small bowel? i get very anxious and in such a state and those kind of procedures so if it wont bring conclusive evidence. The consultant who did the ultrasound also mentioned they might want to do the capsule, wouyld prefer that.

im on steriods and alot of pentas and fast tab zoton and calichew so if there not all working and still inflammation. just want it to go stop hurting :-( x

 

[Grumbletum]

Hi Stacey
Yes it's pretty scary when you don't really know what the results mean, who's got them etc. Just to add to Dusty's invaluable ( as always :wub: ) advice, I waited for a month after a Barium FT to check why I had thickening in the small bowel, for a letter with an appointment to see the GI for the first time.
But the appointment was another month away, letter didn't say if it was Crohn's or not, and my symptoms were getting worse. So I phoned my GP. She had all the test results and called me in to have a chat, confirmed the Crohn's and put me on Pred to help with the symptoms til I could see the GI.
Hope they are able to get things moving a bit faster for you.