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Oh no! My poor sister!

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Crohn's Disease
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Posted 9/4/2008 5:51 PM (GMT 0)
My little sister is 15 and she's been having tummy problems for about a year.  She has the SAME symptoms I had when I was her age; can't eat chocolate, can't eat high fatty foods, and ab cramps.  Now she has swelling in her knees.  I'm so worried that she has Crohn's too.  Currently I'm the only one in my immediate and extended family with anything remotely close to CD.  She had an MRI yesterday for her knees.  We should find out Friday what they see.  I told my mom that she should get screened for CD just in case and now she's freaked out.  But I was misdiagnosed for 6 years and it ruined my large bowel.  If, heaven forbid, she has CD, I don't want her to go through the same misdiagnosis.  Can anyone suggest non-invasive procedures they should do to rule out CD?  I'm not sure that she needs a colonoscopy right off the bat.  And most Dr.'s are idiots when it comes to CD diagnosis.  I want them to be able to go in fully armed with some procedure suggestions.  What should they check??

Thanks

Posted 9/4/2008 6:55 PM (GMT 0)
Hi Bloodwork can be checked. If she has to have the scope they can put her to sleep. Your right though the sooner a person gets on to some help the better. lol gail
Posted 9/4/2008 7:34 PM (GMT 0)
In my experience, there's a whole slew of tests that can check for inflammation and strictures and such, and there are certain blood markers that can be checked like gail said... BUT... those are the same tests and such that can easily overlook the presence of the disease. I could be wrong, but as far as my story goes - the only thing that nailed down the diagnosis was a colonoscopy with biopsies (preferably more than one biopsy). You might suggest them taking biopsies for Celiac Disease as well... I wish I would have known to ask for that "back in the day".

It seems to me that the best way to go is to get the big nasty colonoscopy and just be done with it. They could put her through a CT scan, and an MRI and a Small Bowel Follow Through, and all that stuff, but I'm not sure that anything concrete can be established from those as far as crohn's. If you want her to get a speedy diagnosis, cutting through all that nonsense to the "tried and true" scope is probably the most effective. I truly wish there was a less-invasive thing I could suggest that could nail down a diagnosis... maybe someone else will come along with another suggestion...

I hope for the best for your sis...
Posted 9/4/2008 10:41 PM (GMT 0)
thanks patientspiders. To me a colonoscopy isn't a big deal, because I've had so many. But for a 15 year old? I just worry about her. Also, I'm concerned that they might not find anything in the colonoscopy. I mean, she's not that bad off. mostly cramping and diet restrictions. How sick do you have to be to get a positive biopsy with the colonoscopy? Can they see Crohn's even if someone is in remission? I guess I'm concerned that maybe she's not sick enough for them to see anything in a colonoscopy. Does anyone know the factors involved?
Posted 9/5/2008 12:47 AM (GMT 0)
I'm not exactly sure HOW sick you have to be for something to show up, but...

I was told that the biopsies that ARE taken during a colonoscopy are usually from the damaged parts...so the chances of a positive biopsy seem pretty good if there is some damage. Sometimes it amazes me how symptom-free some of us can be but still have positive tests for active disease. Maybe a CT or MRI could be done first to see if there is any inflammation or upset, and then based on those findings they could then either proceed with the colonoscopy or not... ?

Also, there are some "markers" of inflammation in blood tests that they might be able to see if she's had the bloodwork done already... I wish I knew what specifically to tell you to ask for... all I know is it usually involves an elevated white blood cell count.

I wish I could help more!
Posted 9/6/2008 10:40 AM (GMT 0)
One procedure that you might want to look into is the pill cam test. I have probably had 20 different scopes over the past 4 years and my only positive crohn's signs came from the pill cam test. All the scopes showed some irritation and ulcerations, but the pill cam can reach areas that most crohnies exhibit signs of the the disease. (Mainly the T.I) It was a very easy test to do and it was actually kinda fun to watch people as I past them. You should have seen how fast the line at the Drivers license division cleared when my wife and I came in. The security guards were watching me like and hawk and I had no idea why until my dad told me later that I looked like a bomber with all of the wires and harness belts on me. We laughed for a long time about it, but at least we did not have to wait in line to renew our licenses.
The only down side to the pill cam test, is that her insurance company may not cover the pill cam test unless they have exhausted all of the other options. As you probably know though, colonoscopies are not that bad. The prep is horrible, but the procedure is great when you are put totally out.
Posted 9/6/2008 6:17 PM (GMT 0)
Thanks tsitodawg-

I remember your funny "bomber" story from another post about pill cams. That's actually a really great idea. I didn't even think of it. They have pretty good insurance, but we'll see if they'd cover it. My mom is still pretty freaked at the thought that my little sis might have CD. But I guess we all need to get a reality check and do what's best for her.

Thanks again-
Posted 9/8/2008 3:22 PM (GMT 0)
The capsule endoscopy is great for noninvasive, and it is able to visualize the whole gi tract. the only draw back is that you cant take a biopsy, so if they see something and they want to do further testing, she will have to do a colonoscopy anyway. And you do have to do the prep with the capsule endoscopy too. As far as blood work goes, she can have a CRP done (c-reactive protein). This is an inflammatory marker. Also a CBC might help, because it will test her white blood cells and it can tell you if you are battling and infection, but it is a generic blood test. I know there is a blood test that has to be sent to promethius labs in CA that tests specifically for UC or CD, but I cant remember the name. It is expensive and not all insurence covers it, and it is not definitive in all people (my husband was one of the 25% of people who doesn't have any markers). Other htan that, I'm all out of ideas! Good Luck and i hope everything turns out well for your sister!
Posted 9/11/2008 7:20 PM (GMT 0)
I just wanted to update everyone on my sister. Her MRI of her knee showed that she had a 3.5cm ganglion cyst under a knee. They figure it is from playing tennis. She has to have surgery, which is a bummer, but truthfully I'm glad they found something. It makes me feel better about her possibility of CD. Unless someone comes on here and says that they develop ganglion cysts from their Crohn's! Thank you for everyones suggestions and support. I will keep them in mind if it seems her tummy problems worsen.

Cheers
Posted 9/13/2008 7:11 AM (GMT 0)
i wasnt much older than that when i was first diagnosed.... and the scope wasnt that big a deal. i dont think they even had me do any prep, they just had me not eat reds/solids/etc... since nothing was staying in there for long anyway. it had gotten to the point where my allergy meds were passing through my system none the worse for wear.
Posted 9/13/2008 4:23 PM (GMT 0)
I am glad they found out what is wrong with her knee. Sorry she has to have surgery for it though!! I don't think a gaglion cysts is going to help with the tummy issues either so I would still get that checked out. Just having blood work done is not going to tell her very good if she CD.
My blood work comes out great and my IBS blood test came out neg. It wasn't until I had a scope that they could confirm my CD. Good luck to her
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