New Diagnosis - scared, worried, oblivious

[rosiebush]

Hi All,
My name is Rosie, I am married to Mark, and together we have 4 beautiful children.
Rebecca is 18, David is 16, Jonathan is 12 and Katie is 9.

Right now I'm seriously peeved off with the world.
David was diagnosed days after birth with a complex heart condition, and we've been to hell and back with him. 20 surgeries later he's doing really really well.
My youngest Katie was diagnosed with pre-cocious puberty at 6 years old, this too has been hard for us, as a child sooo young as she is, struggling with hormonal changes is not plesant.
My eldest Rebecca has been suffering with bloatedness, cramps, and days where she spends hours on the toilet. Initially it was thought she was lactose intollerant, and all lactose products were removed from her diet, she seemed stable for a few months, and then whatever shee seemed to eat caused her problems, but most dairy and whaet. Rebecca's nan has coeliacs, so it looked likely that she may have had that as well as the lactose intollerance.
Thankfully Jonathan seems to be fit and healthy.

Well yesterday our world was again given a jolt, and my heart felt crushed.

Yestreday Rebecca had an Endoscopy and Colonoscopy.
Her immediate feeback was Gastritis and Duodeditis found via endoscopy, and Crohns via Colonoscopy.

The way the feedback was given was as if we already knew or suspected Crohns.

I've done some internet reading, and I know until we see the consultant for the biopsy results we are going to be living in limbo.

Katie has also been experiencing similar symptoms for 6 months, she has seen a consultant at has had various bloods.

I just don't know what to do.....


Rosie

 

[Dexky]

Wow Rosie, I can certainly understand your anger and fear! I hope Rebecca doesn't have crohns but if she does, I hope for you all that it's mild and manageable.

Do either Rebecca or Katie have blood in their stool? Did they prescribe anything for Rebecca while they wait for biopsy results?

 

[DustyKat]

Hi Rosie and :welcome:

Oh my goodness...I have no trouble seeing why you feel the way you do. What difficult and heartbreaking time you have had over the years and continue to have. My heart goes out to you hun. :hug:

I know from others here that there seems to be quite a waiting time between colonoscopy and consultation in the UK, when is your appointment?
If it is a few weeks I would be ringing the doc for results before then. It should only take a week maybe 10 days at the most for results to be reported on and sent to the doctor. There is nothing worse than waiting and not knowing.

Where are you up to with Katie? Do you have any of her blood results back?

I hope you get solid answers soon Rosie. Keep us posted and we will do our best to help you through these dark days.

Dusty. xxx

 

[rosiebush]

Katie's blood for Coeliacs and H-pylori are normal. As were Rebecca's for Coeliacs, but she did not have h-pylori tests done until just before her Endoscopy and Colonoscopy.

The hospital's here are very slack inbetween scopes and follow up appointment. Rebecca was due to see the consultant on the 22 Dec. But a few weeks ago this was changed to 26th Jan.
Would you believe that the day before her scopes the hopsital was in process and changing the hospital review again.
Lrtter arrived this morning with a date of March 8th... are they having a laugh???:angry-banghead::angry-banghead::angry-banghead:

I've been trying to get hold of the consultants secretary, no answer. I phoned appointments office, and they have NOTHING.
Appointments office woman listened to my plight of Rebecca's new diagnosis and tried the secretary's direct line number. Apparently she is out of the office until Monday. Appointments office lady gave me secretary's direct line number, and advised I call 1st thing Monday.

I hate the waiting game, and when something like this is dropped on a family, they shopuld be given support, and not advised to research it on the internet.

Rosie

 

[DustyKat]

What is the next for Katie?

Good lord! and in the meantime you are supposed to just grin and bear it! Grrrrrrrr. That is awful Rosie.
You are obviously doing a fab job at trying to get answers but it just shouldn't be this hard should it...:hugs:...and you are right, you should be given support straight up when they drop something like this on you.

:hang: Mum, you're doing great with all your babies! We are with you every step of the way hun.

Dusty. xxx

 

[Dexky]

I hate the waiting game, and when something like this is dropped on a family, they shopuld be given support, and not advised to research it on the internet.

Rosie

They damn well should at least give you access to the results of her scopes!!! I can't believe you have to wait until March!!

 

[kimmidwife]

Hi Rosie,
I also have a bunch of kids each with their own medical problems. I know how tough it can be. Hang in there! I find it helps knowing there are other's out there going through similar things who can offer help and support. This forum is a great place to start. I don't know how I would be without everyones help and support here. I have gotten tons of great advice and even learned about new and old treatments that are not being used in the USA. Keep your chin up and remember you are not alone!

 

[rosiebush]

They damn well should at least give you access to the results of her scopes!!! I can't believe you have to wait until March!!

Been on the phone to the gastro consultant's secretary today, said it's ridiculous to be expected to be left like this. Apparently he is on holiday this week, the secretary said she would make sure the consultant sees Rebecca ASAP.

But if all else fails I have a back up plan.

Rosie

 

[rosiebush]

Also a bitter twist to all this heartache is, Rebecca's boyfriend was diagnosed with Crohns 6 months ago. He has been is hospital with 2 relapses since his diagnosis.

How cruel can fate be....?

 

[izzi'smom]

Oh, how awful...March?! Hope they get you in before that-that is a crazy wait! So Rebecca has a bit of experience with Crohns-not sure if that is a good thing or a bad thing. Poor kiddo! Hope you are holding up OK, and stick around...there are wonderful, supportive people here

 

[Dexky]

Good for you Rosie!! Stay after 'em!!