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New Diagnosis - scared, worried, oblivious

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.

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.

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


Rosie
 
Rosie, do not be afraid. I myself am an 18 year old, and have been diagonesd with crohns a few months. Before that i had crohns for 2 years and i still love and enjoy my life.

When I was first diagnosed with crohns, I found this forum and got terrified by all the symptoms described by other members. It caused me a lot of anxiety, and was terrified. But today, I live life normaly. Go out and have fun with my friends and I just got into university. None of my friends know or suspect my condition. I have had those episodes of pain where I ended up curled on the ground while my parents dragged me to hospital, but MOST OF THE TIME it is not that bad.

After my colonoscopy, the doctor suspected crohns but turns out that my condition is stabilized and not that bad. I consider myself lucky. I qoute my doctor in saying "There are cases [the worst cases] were we know it is crohn even BEFORE the colonoscopy and do it only as verification." Do not worry too much, the results can be urprising.

Great luck with the result.
Enjoy life.
Stikku (Matthias Portelli)
 

Jessi

Moderator
Rosie, hi and welcome to the family. I know how frustrated you must be at the moment. Getting an answer is half the battle, though. I'll bet your family is very strong with everything that they've been dealt.

Stick around here with us. I hope you find answers to all your questions and concerns. Hang in there. :hug:
 
Hello Rosie and welcome here...:)
Keep in touch and try, try to stay positive through it all.....That can be a big ask..
But you found here and thats a first positive!!
 
Thanks muchly guys...

Rebecca was supposed to see the consultant for a review on 22nd Dec. A few weeks ago this was changed to Jan 24th.
Now another letter dropped through the door, made the day before Rebecca's endo and colon scopes, with a new date of the 8th March.

They must be having a laugh.
I've juist been on the phone with Rebecca's consultant's secretary... or at least trying to speak to the secretary, line just rang and rang.

I tried speaking with the appointments office to get the date brought forward, and told her of recent events.
But no available date.
She also tried the secretary, aparrantly she is out of the office until Monday.
Appointments office woman advised I ring her direct line number 1st thing monday. That it also has an answerphone on that line, and if she doesn't answer leave a lessage and she WILL call back.

hanging in there, but it's hard work.

I have such small shoulders and sooo much weight to carry on them.

Rosie
 
Rebecca is an active intelligetn girl with aspiratrions,
She plays football, is studying biology and wants soooo desperately to be a midwife.

Another punch to this trail of events is, Rebecca's boyfriend of almost 3 yrs, was diagnosed with Crohns just 6 months ago.

How cruel fate can be.

Rosie
 

Jessi

Moderator
Oh Rosie, sweetie. As if you didn't have enough to be upset about. Maybe everyone in the office is taking a 3 month vacation for Christmas. I don't know if this is jumping the gun or not, but I would have half a mind to find a different gastro. Seriously!!
 

Jessi

Moderator
Rebecca is an active intelligetn girl with aspiratrions,
She plays football, is studying biology and wants soooo desperately to be a midwife.

Another punch to this trail of events is, Rebecca's boyfriend of almost 3 yrs, was diagnosed with Crohns just 6 months ago.

How cruel fate can be.

Rosie
This is very ironic. Similar things are going on in my neck of the woods.
 
Hi Rosie
This is such a sad story. There's nothing worse than watching your kids suffer.
This is just a suggestion, but if Rebecca is in really bad pain you should take her to A&E. If she is admitted as an emergency you bypass the appointments system. It seems very unreasonable that she should be left to suffer for so long.
Also may I add that there are plenty of us whose Crohns is totally under control with medication. The sooner the diagnosis the sooner she can begin the appropriate treatment. Wishing you and your lovely family the best. Stay in touch.
Hugs .... Marie
 
Hello Rosie,

Welcome to the forum! Sounds like you've been having a really tough time over the years. Hardship and hurt is definitely not dished out in equal doses and you've clearly already had more than your fair share. I really hope that things improve for your family soon. But like Jessi said you definitely must be a tough cookie to have dealt with all this over the years.

I also got diagnosed with Crohn's this year after an emergency op in May. Weirdly I didnt have any symptoms until 2 weeks before. This forum has shown me that a diagnosis can lead to effective treatments that get good results. Im sure once Rebecca is on the right meds the crohn's will be under control and that she'll continue with that active life of hers. Until then she has a supportive family and boyfriend to keep her chin up.

Hope you get some answers soon.


Becky x
 

Dallies

Dragonfly
Hi Rosie, Rebecca must be in year 13 like my daughter Meg completing A-levels- Meg has just applied to university and was diagnosed with Crohn's in June '10 I am thinking of all of you and please feel free to message me xxxxxx
 
Hi Rosie, Rebecca must be in year 13 like my daughter Meg completing A-levels- Meg has just applied to university and was diagnosed with Crohn's in June '10 I am thinking of all of you and please feel free to message me xxxxxx
Rebecca is in year 13, yes.

She has just put in her university applications.

She also is having an interview tomorrow for volunteer work on the local midwifery unit.

She's determined to carry on as normal, and not let this hang over her dreams.

Rosie
 
Oh Rosie, sweetie. As if you didn't have enough to be upset about. Maybe everyone in the office is taking a 3 month vacation for Christmas. I don't know if this is jumping the gun or not, but I would have half a mind to find a different gastro. Seriously!!
I've spoke with the gastro secretary today, gastro is on holiday till Monday next week (think he is taking all his hols before and after Christmas)

She promises to bring up Rebecca's case and urgency as soon as he returns and aims to bet an appointment ASAP. If all else fails, I have an appointment with a GP who is not afraid to push consultants into getting what his patient needs. And did the same for Rebecca's boyfriend.

Rosie
X
 

Dallies

Dragonfly
Rebecca is in year 13, yes.

She has just put in her university applications.

She also is having an interview tomorrow for volunteer work on the local midwifery unit.

She's determined to carry on as normal, and not let this hang over her dreams.

Rosie
That's great news. Meg has her interviews coming up next month so fingers crossed. The steroids seem to be helping. Lots of love xxxx
 
Hi Rosie

The delay in the meeting could actually be a positive sign. I was diagnosed with Crohns in Feb 2010 through a colonoscopy. I was supposed to have a follow up appointment soon after but the specialist pushed my appointment back to July of that year. This was because the biopsies had come back normal and there were other patients in more urgent need. This limbo period is very difficult and we all understand what you are going through. You are right to apply pressure on your GP as that is how I got my appointment dragged forward. Good luck
 
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