Preliminary results are in...

[buchanaj]

GI thinks it's Crohns based on what he saw. Of course, biopsies will have to confirm. He saw some small ulcers throughout her colon and a lot of inflammation around the terminal ileum. He could get the scope through the terminal iliem but was able to insert the biopsy tool far enough I'm to get a good sample.

Not what I was hoping to hear but we will get through this.

 

[pdx]

So sorry to hear this. At least you can finally move forward with treatment, though. I hope that your daughter starts feeling better soon. :ghug:

 

[crohnsinct]

I think this confirmed what you as well as we suspected. It stinks but the good news is he got a good look and you are going to have a definitive answer and then can move forward with a plan and get your girl feeling better. It feels like a blur right now but soon you will see your happy healthy girls and all of this will be nothing more than a bad memory. :ghug:

 

[buchanaj]

I had a very strong suspicion. ..especially with the recent onset of nocturnal diarrhea. GI said the ulcers in her colon look relatively mild but the terminal ileum had significant inflammation. He decided to start her on a short course of steroids to see how she responds ...and to help relieve some of the symptoms.
I'm just so sad for her ...and mad at myself for not getting this under control sooner. I listened to docs tell me it was just teenage anxiety.
So, I guess I will be joining your club on a more permanent basis...if you will have me.

Jennifer

 

[upsetmom]

:ghug:...Don't get mad at yourself a lot of us have been there too.

When my daughter got sick l had a DR tell me to go on a hill where there's no one around and to scream at the top of my lungs to get all the anxiety out of me.

 

[buchanaj]

:ghug:...Don't get mad at yourself a lot of us have been there too.

When my daughter got sick l had a DR tell me to go on a hill where there's no one around and to scream at the top of my lungs to get all the anxiety out of me.

I'm giving myself 1 day to be angry...and then we are going to pick it up and move on. Take the cards we've been dealt and taklckle this head on.

 

[crohnsinct]

Good girl! What's done is done. We have all been there. No one's fault. Not even the docs. IBD isn't the first thing that pops into their minds. They have to explore the other more obvious reasons. Being mad and regretting the past won't help anyone.

You absolutely deserve a day to lick your wounds! You have the right idea. Tomorrow is a new day. Read the success stories here. Things will get better! :rosette1:

 

[Mehita]

I'm giving myself 1 day to be angry...and then we are going to pick it up and move on. Take the cards we've been dealt and taklckle this head on.

That's exactly what I tell DS. He (we) get one day and then we need to turn that angry energy into something that will be of benefit whether to us or someone else.

Hang in there, Jennifer. It takes awhile, but it becomes your new normal and you get used to it. You won't ever like it, but you get used to it.

Hugs to you...

 

[Maya142]

Hang in there Jennifer, we're thinking of you! It will get better - the best advice I got was it's a marathon, not a sprint. The first year is often the hardest, but it will get better and you will find a new "normal."

Sending hugs :ghug: and keep us updated! We'll be thinking of you!

 

[my little penguin]

:hug:
There are many stages of grief and we have all been there
They don't have to go in order
They first year was very hard for me as a parent
But it does get better honest
Just takes time and lots of baby steps

 

[Maya142]

Wanted to add: my daughters first scopes looked very similar to your daughter's. M had small ulcers throughout her colon. Her TI was red and friable and looked worse than her colon.

8 months later, after being on Remicade and MTX (and Entocort for 3 months), M's colon looked "beautiful" (biopsies looked perfectly normal) and her TI was a little bit inflamed but MUCH better.

So while things seem awful right now, they will get better.

 

[CarolinAlaska]

Sorry to hear it. I'm glad they found it and that there are good sources of treatment.

 

[Tesscorm]

Ditto all the above. It's heartbreaking for a parent to not be able to take this from their child and it does take some time to adjust. But, with treatment, she will feel better! And, once you see her feel better and getting back to her life, you will feel better as well.

For me, it helped me learn everything I could about crohns. I suppose I never wanted to be blindsided again! It gave me some sense of control, it allowed me to see there were treatment options, I knew what to ask doctors, what their answers meant, etc. This helped me.

The members and parents here are amazing!!! They have been an absolutely incredible source of advice, information and support! We all understand!! :ghug:

Do take some time to lick your wounds and then just take it one day at a time as you build up your own strength to deal with this. And, it will get better!! :ghug: