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ER Diagnosis and Antibiotics Prescribed


Sun, October 18, 2020 11:13 AM

Hello community! It is SO good to finally find you. My daughter (now 19) has suffered many years of misdiagnoses and doctors pushing her symptoms aside as minor, or "female issues". This past Tuesday her symptoms were so severe that she has been bed ridden, spending the majority of her life in the bathroom and lost 6 lbs in 2 weeks. She's only 92 lbs!!

We finally decided to take her to the ER last Tuesday. Even there they pushed us into the "non-emergency" area of the ER and told we would not see a doctor. I fought back and was lucky enough to have nurse that found a resident to help us. 

After blood work, a stool sample, and a CT Scan they diagnosed her with "Pancolitis, most pronounced in the left hemicolon" and told us to follow up with a gastro doc. Which we were already doing over and over. After 7 hours, we were sent home with an R/X for (Bactrim) Sulfamet/Trimethoprim 800/1600 2 x day. She took this dose for 3 days before I noticed the doctor sent in the wrong dosage. According to the ER paperwork she should have been taking 400/800 2 x day. Is it just me or did they prescribe a "daisy-cutter" instead of something more specific like an immnosuppressant?

After reading forums and medical articles, I worry that this is not the right medication for her to take and fear that it could make things worse before we can see the GI doctor. Is there any way to find out before any more damage is done??

Thank you so much for any help and recommendations!

FPO NTR2020
Joined Oct 18, 2020

Tue, October 20, 2020 10:20 AM

Reply posted for AustinP.

Thank you AustinP!!

You kind words are extremely reassuring and help us realize we're not crazy parents and that she is not alone. smileyI'm so sorry to hear that you had to go through all of this same craziness as well, but relieved to know there's a light at the end of the tunnel. 

The first thing we did was limit her diet significantly and that has made a huge difference. The doctor told us no lactose, no gluten, and limit fructose. It's been a challenge but, by golly, we're a creative bunch.

The high dose of the antibiotic was horrible on her digestive track and was hurting as much as it was helping. We cut it back to what the original paperwork suggested. With that AND the new diet she is making a quick comeback and getting back to her old self. 

We're counting down the days until we see the GI and get an official diagnoses. Thank you again for reaching out to our family and putting our minds and hearts at ease.

Warmest regards,

Nicole's Mom and Dad - (Tammy and Ron)

FPO NTR2020
Joined Oct 18, 2020

Tue, October 20, 2020 7:10 AM

Reply posted for NTR2020.

Hello NTR,
I completely sympathize with what your daughter is going through. I'm 21 years old and I suffered for the longest time going through mis diagnoses until finally I received help. Much like you described, I went to the hospital myself and found them to be useless. The only medication that stopped my flaring relatively quickly was prednisone. It is a pretty strong steroid aimed at surpressing the immune system, I hated taking it but it helped in our last ditch effort to stop the flare. My best advice would to be stay clear of high fiber foods as it irritates the bowels and continue to take the medication they prescribed until she can see a GI. The hospital system is the absolute WORST. Just hang in there and I hope that your GI is able to answer all your questions and provide your daughter with the correct medication. 

FPO AustinP
Joined Oct 20, 2020

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