From the beginning to the end ?

[Crohn's Mom]

from the beginning to the end ?

So I'm curious...I've been reading through a lot of the threads and trying to figure out the answer to my own question, but nope, haven't yet
It's probably out there somewhere and I just can't find it...

It's my understanding that Crohn's can affect a person anywhere from the mouth down to the anus. Most people state in their "signature" or somewhere, where their CD is "at". Most people fall into the terminal illeum it seems. ...When my daughter was first suspected of having Crohn's at age 9, her doctor said she had granulomas throughout her entire digestive tract. She said this is rare and means that she, if she has Crohn's, has it in her mouth, esophagus, stomach, small intestines and colon. Then again the same results last year when she was officially diagnosed in 2010 (age 16). Is this common ?
The major active disease in Gab's case is in her illeum, cecum, and colon for right now...but we know it's lurking everywhere else. How many people actually have it "every where " and if you do what "symptoms" do you have?

I wonder if a person were to have a "flare" in their esophagus or stomach per say what would the symptoms be ?

 

[Keona]

:sun:Hi Crohns mom

I initially went to see my GI because I had really bad acid reflux. My GP told me I had GERDS and the medication I was (and still am on, wasn't working and the pain was unbearable). I had an endoscopy done and he found inflammation in my stomach lining and called it gastritis. I also have a hietal hernia. Nothing has been done since although they said their next step is to give me a Ph test and he also talked about a fundo wrap. It was a fluke that my hip pain came up - my GP thought I had arthritis from running so much - and I love up hills!! So, I believed her. The referral to my GI was b/c of my suspected GERD. When he asked what tests I have had done, I mentioned the hip x-rays and he put everything on hold as he suspected Crohns.
At this point he hasn't changed my GERD meds as he put that on hold (since I didn't show any sign of Barrettes esophagus) and is focusing on my bowels.
My symptoms are GERD symptoms and I find them severe at times. I have pain in my shoulders at the back and in between my shoulder blades, etc... I get cankers in my mouth but they aren't so bad in comparison. My voice sometimes sounds hoarse. I don't know what is wrong or if it is GERD and no Crohn's. What I have read is that it is rare in the esophagus so I have ruled it out a little. I think they want to see if it responds to the crohns meds when I go on them ... IF I ever go on them!! My GI is going to do another endoscopy after my bowels are dealt with to re-investigate. I hope not.
anyhow... sorry it doesn't answer your question but I am assuming the symptoms are similar to GERD as they haven't ruled out Crohn's. What are your daughters symptoms??
I hope she finds some relief soon. Breaks my heart that someone so young gets this when it is supposed to be the best time of their lives...

 

[AZMOM]

T - Claire is an "everywhere" patient too. Other than small bowel but we never did a pill cam and he was suspicious of that also. But everything visible by the scope had granulomas, aphthous ulcers, etc, etc, etc.

So, I'm saying - I'm with ya!

Hugs,

 

[Crohn's Mom]

Julie, every time I see a post from you on here I just look at the beautiful little face of your daughter and then see the "dx JRA age 3, Crohn's age 6....Man, o man.....your poor little girl that breaks my heart ..she is so young !

 

[mizgarnet]

I am a 20 year veteran everywhere Crohnie, too! Stomach is similar to ulcer symptoms, I have GERD symptoms, hoarseness, mouth ulcers, shoulder pain, neck pain, and coughing. I have never had a flare everywhere at once. I am in remission now.

Hugs,
Wendy

 

[DustyKat]

No everywhere's here but I just wanted to say hi, :bigwave:, and let you know I am thinking about you and Gab's.

Dusty.

 

[Crohn's Mom]

I NEED to know the smiley secret ! LOL I'm tired of the only one I know how to do haha

... and, Thank you Dusty

 

[Mountaingem]

I've had flares in the mouth and throat, as well as esophagus and stomach,too.
Here's my experiences:
Mouth: Severe mouth ulcers, running the length of the jawline, upper palate. Really sore, unable to eat because it's too painful to have anything in the mouth.
Throat: Terribly sore, swollen throat with ulcers, looks like Strep throat. I lost my voice, and couldn't swallow.
Esophagus: Acid reflux so bad it went into my sinus cavity, and ulcerations in esophagus, throat and sinuses. GERD medications didn't really help, which is why my GI got suspicious of Crohn's flaring in; confirmed with scope.
Stomach: Horrible pain every time I ate, ulcerations, vomitting, tender spot in stomach. I also had a minor abdominal abcess.

I know this all sounds pretty gruesome but I thought by sharing specific symptoms it might give others and idea of what to watch out for. Catching it early and treating it is key. All of this stopped when I started Remicade, but resumed when I missed a dose due to the flu this January.

Hope this helps!

 

[DustyKat]

You have to know the secret handshake first! :lol:

When you reply, if you choose the go advanced button below, it takes you to a new screen and to the right of that are your smilies. Note the *more* option at the bottom left hand corner of the smilies box, click on this and a whole new world of wonder will behold you!

Dusty. :wub:

 

[Crohn's Mom]

:ghug:

:mademyday:

Yippeeee !!! :lol:

 

[AZMOM]

Three cheers for Tracey and the icons! Ha ha ha. Hey I saw your note about Gabs' good labwork report. Wahoo!

Lots of good news and sunshine today - can't beat it!

Hugs,