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18 Year Old - IBD/Crohn's (no firm dx)

Hi all...

My daughter, who will be 18 in a few weeks, is seeing a pediatric GI doc here in the Atlanta area who is trying to help us figure out what is happening with her.

Her story started a year ago when she developed a "cyst" close to her rectum that was so bad she could hardly walk. We took her to an urgent care and then the ER inside a 24 hour period. The ER determined it to be a Bartholin's Cyst (more of a female thing) and did a sort of "emergency surgery" right there in the operating room....with little medication to try and ease her pain - they lanced it and had to push all of the infection out which was horribly painful. We followed up with an OB-GYN who determined it was NOT Bartholin's at all - but a fistula. My baby had been operated on for a FISTULA in an ER with NO anesthesia....OH MY GOSH. The colo-rectal surgeon tried to prevent another surgery - but it was inevitable and she had to have a Siton. In the process of all this - she was advised to see a pediatric GI specialist because it is typical that someone that age with a fistula of that kind is due to Crohn's. The surgeon feels that the KIND of fistula is not the kind that Crohn's patients get....but the GI doc seems to disagree.

The GI doc did an upper endoscopy and colonoscopy and had her swallow a pill cam. The only thing those test revealed was some inflammation (mild) in her upper gastric area. Her symptoms have been, for about 2 years...diarrhea 3-5 times a day. All of this together plus the fact that her 2nd cousin has Crohns - leads the doc to think that Crohn's is in her future and this is just the beginning therefore not showing strongly in the imaging studies they have done. On a side note - he said that the pill cam and scopes he did are the gold standard for Celiac disease and that the tests did NOT confirm Celiac....and the blood test was negative as well.

So sorry this is an epic post....almost done.
She has been on Flagyl and Asacol since early February and she just had a check up this past Monday. The doc was happy with her response to the meds and said for her to stop the Flagly and see how it goes. By yesterday - she was not only having 3 bm's.....the last one had the Asacol - almost whole - in the bm! I have spoken with his nurse today - and we have an action plan, but I'm just wondering what anyone here makes of all this?

Is Inflammatory Bowel Disease an umbrella dx that Crohn's is part of? I keep hearing him say....it may be IBD...but he feels Crohn's is down the road for her but that doesn't make sense.....does it? Help. Thanks for any info you might provide.
 
Location
NY
Hi and welcome.Oh it sounds just awful what your poor daughter had to go through in the ER! You are right about IBD, Crohn's is one type IBD. I wonder what one your doctor was thinking when he said "IBD". Has your daughter had any MR or CT imaging? My son is also undiagnosed and also had daily diarrhea. I hope you get answers and your daughter feels better.
 

David

Co-Founder
Location
Naples, Florida
Greetings and welcome to the forum. I'm so sorry to hear of your daughters troubles. :(

Before I start, you may want to check out the Parents of Kids with IBD forum. I realize she's almost 18, but they're always out kids, right? :)

As Jeanne said above, IBD is the umbrella for Crohn's Disease, Ulcerative Colitis, Microscopic Colitis, and some other rarer forms of Inflammatory Bowel Disease. The terminology your doctor is using makes sense to me.

As for the Asacol coming out whole, that's not uncommon. The medicine was released but the pill casing itself often comes out whole or in small pieces.

I assume they did a load of blood tests. What did they do and did they all come back normal?

All my best to you and your daughter :)
 
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