This is a long story (as most IBD stories are) but I’ll try and be as short as possible....
My daughter is 16, and was originally diagnosed with Crohn’s back in 2005. Since then, she has been suffering off and on. In the beginning, she had a lot of blood in her stool, along with heavy mucus. Since then, (until last week) it has only been diarrhea and mucus, coming and going from once a day to 15 a day, but never "Normal" stools. She’s had 2 different docs, 3 scopes, 3 EGD’s, 2 barium swallows (that couldn’t be completed b/c of vomitting, even with a tube), 1 CT scan, and we go in on Wed for a Meckel Scan. Last week, the blood came back with a vengenance. I took her in to the doc, they admitted her. After a night of vomitting the prep laxatives (even though she was tubed) she was scoped the following day. All scopes were abnormal, showing inflamation in the Esophogus, Stomach, Upper Colon, Lower Colon and Rectum. However, all of her labs were normal (as usual, grrrrr), even the SED rate, which was only 3. She has NEVER had abnormal labs, ever! Which presents a problem. After changing docs back in early 07, they decide that they aren’t even sure if it IS Crohn’s, because of the labs being consistently normal. They say, it’s UC, then it's maybe still Crohn’s, then back to UC....but so far, they just keep saying "indertiminate colitis". Basically, they way it was explained, was she presents symptoms that you ONLY have with UC, and ONLY with Crohn’s - yet she shows BOTH.....How can that be?
She consistently has stools full of dark clotty blood, bright red blood, mucus, watery stool and sometimes no stool at all! All her scopes do show inflamation, but nothing as to where the blood is coming from. Yet, all labs come back normal. The blood is coming from SOMEWHERE, right?! In the beginning, she was also checked for RA, and Lupus, and all labs came back negative. She has had significant joint pain (but no swelling) hives that recquired epinephrine injections (that was our very first symptom back in the day), muscle aches (rare, but still sometimes - more so recently) severe abdominal pain that comes and goes usually generalized but here lately only in the upper left quadrant. (and I'm talking SEVERE...)
SInce being discharged from the hospital last week, her symptoms have become worse, and she has remained in bed for 3 days - no energy, bloody stool, mucusy, etc. I took her back in the very next day to the ER (as instructed upon discharge from hosp.) only for them to do a CT scan, and say they can’t help her. They also said I was being unrealistic in expecting an "instant fix"! Um, 3 years is NOT instant...It was also not her GI doc who saw her, as he was out of town. (but I feel he's not really any better) But all labs, AGAIN, were nornal, SED was 3, no anemia, clotting factor normal, etc. They sent us home, where we have remained, her in the bed, and me on the internet!! I am just docummenting everything she does, eats, etc. We go back for follow up next week.
I do NOT understand, how 1. they can’t diagnose her after THREE years, and 2. how she can have severe inflamation throughout the entire GI tract, yet all labs come back normal time and time again?!
Meds she is currently on: Prednisone, Nexium, Flagyl from hospital,
- but normally she is on Pentasa, 6MP, and Elavil.
- in the past, she has been on Entocort, Prevacid, Imuran, Pepcid, and Asacol
Can someone PLEASE please help me figure this out? I can’t sit back and watch my daughter suffer like this any longer......someone out there, has got to know something, or someone who can help us.
There are NO other Pediatric GI docs in this area, only 2. And we have seen BOTH.
Please help me, please?!