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Nathalia's Diagnosis

In Nov 2012, my daughter Nathalia (18 about to turn 19), had her second episode of vomiting non stop (she always had issues depending on what she ate), to the point of going to ER. They medicated and admitted her as her heart rate wouldn’t go down. They did several exams and was released the next day. In Dec, she told me she has had some blood and mucus in her stool, no diarrhea, actually she was constipated. I went on a trip and she had a colonoscopy done while I was away. The colonoscopy only showed mild colitis in her colon. But because of blood in her stool, they diagnosed her with UC. Started on Lialda, but she did not like the symptoms and took upon herself to stop. I did not think the results were convincing and requested parasite tests, sure enough she had Blastocystis hominis, she was treated with flagil (bled a lot during treatment). In February, another vomiting episode and ER, at ER we told dr. she had UC , and had been treated for blastocystis hominis and that she had blood in her stool during treatment, she did blood tests, rectum exam and dr. said there was no evidence of blood, that she was dreaming, and that the blood tests did not show signs of IBD. CAT scan showed blockage in colon due to constipation possibly.
We changed GI, and the new GI was not convinced she had UC either, he said her symptoms were more likely to be Crohns, as she also had sores in her mouth from time to time, but exams were not conclusive, so he did not medicate her.
She started on the SCD diet and was able to maintain until July when she fell off diet. In October a flare up started, diarrhea, blood and mucus. Another colonoscopy by new GI was done in November, by than she was loosing lots of weight. He saw ulcers in lower left colon and diagnosed with UC, he prescribed Lialda again (with no avail), after 6 weeks (by now, with diarrhea since October and no more periods either) she returned to Dr. and he was very concerned about her weight loss, requested blood tests and sure enough, called us in two days to have her admitted, as she was borderline anemic and at hospital he could do more exams while observing her. No more SCD, as she needed weight fast. She stopped Lialda as it was not being absorbed at all due to diarrhea and frequent BMS. Because her white blood cells were elevated and fever started, they started her on Flagyl and Cipro, the exams would take 72 hrs to return and they did not want to take a chance. On her first day at hospital she had 40 BMS, second 30 BMS, and slowing down accordingly. After 5 days she was released with all parasites and C Diff negative.
Tried Lialda again and worsened for one day. Stopped it for good. She tried mesalamine enemas twice and had reaction to it, so no more enemas either.
Dr. kept suggesting that it still could be Crohns due to continuing loss of weight and no response to Lialda .
Nathalia had gone from 105 to 82lb in our home scale, we were so worried, I then remembered my dad saying that guava leaf tea was a miracle remedy for diarrhea, sure enough we followed an internet protocol we found and she went from 8 to 2 bms a day. The down side to it, is that it also keeps people from gaining weight, as it burns sugars. She had an endoscopy and her whole upper track up to esophagus was inflamed, we had to stop the tea and after so much fight against we had to give in to Prednisone. The Dr. respected our wishes until he saw there was no way around it. Meanwhile she had several more stool tests for parasites, discriminating each individually, she had tons of blood tests, she had a 24hr urine test done, she had a small Bowell follow through to make sure there is no blockage for a camera capsule swallow which will be done in a week.
After all the exams came back negative, he than diagnosed her with crohns, although he said that the white blood cells count indicate a parasite infection, but he couldn’t pin point. AFF REALLY? She is now on Imuran (1 week today) and 20mg of pred since Monday (3rd week and weaning of). Although she will continue on meds, we will continue on investigating. She just scheduled her camera capsule swallow for early next week.
 
Welcome! This is a great forum with loads of information and very knowledgable people.

It sounds like Nathalia has had a really hard time - I hope the Prednisone helps and she gets back on her feet soon.

Take care!
 
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