View Full Version : Need input ... new here ... scared!

11-02-2015, 04:28 PM
I have a 23 year old daughter who has had bowel issues most of her life. I had her scoped at Riley when she was 7 years old...found nothing. She has been to the ER, gynecologist, urgent care, our family PCP, GI for a 2nd colonoscopy a few months ago, gallbladder ultrasound, tons of labs and stool tests, and nothing. She does fine for awhile..sometimes weeks, months..then seems like out of nowhere she's running to the bathroom with severe diarrhea. Her stools are more times liquid than not. She's had a celiac panel done and that was negative. The most recent colonoscopy she had a few months back the GI doc was concerned about two things. Her sigmoid colon he said was inflamed and looked as if it could be Crohn's or UC so he did biopsies. The second thing concerning to him was he said for a 23 year old she has extremely abnormally large veins in her colon..as large as his fingers he stated....he labeled this as "pelvic congestion syndrome" and suggested we see a gynecologist. The biopsies he took were normal by the way.
Okay so this past week she began having severe lower abd pain..below her navel..so bad and so intense she couldn't even move till the pain let up. Then a few hours later she began having bloody diarrhea..bright red blood..every 15-20 minutes the pain would come in waves and start up and would last before, during her bowel movement then it would stop and the pain would go away..until a few more minutes later then repeat. This went on for hours and I have never seen her in so much pain. I got her in that same day with our doc who sent her straight to hospital for a STAT CT scan of abdomen/pelvis and labs and stool tests. Next thing I know she is admitted for sepsis and colitis. Sepsis is infection in the bloodstream and is very serious. They said her entire colon...not just a section, but rather her entire colon was full of infection and she needed IV antibiotics right away. Her temp was 102.1, pulse got over 170 and it was very scary to say the least. She began vomiting bile at one point, dry heaving nonstop and literally had over 40 bouts of diarrhea in a matter of hours. She was so dehydrated that they could hardly find a vein for the IV to go in. They had blood transfusion on standby for her just in case but thankfully all she lost was 1 pint and didn't need it.
She was in the hospital for 2 nights and just followed up with her regular GI doc..not the on call one that she had during her hospital stay. He informed us at today's visit that they found no bacteria in her labs/stool, cdifficile was negative, no ova or parasites. Her WBC was 17 and her Crp was 70!! He ordered a Prometheus IBD serology 7 blood test which we had drawn today. He said this can help indicate if this is truly Crohn's or UC and if it comes back indicating one of these two..he wants to scope her again and get more tissues.
I am just looking for advice, if anyone has went through anything similar or can give me any input at all I would greatly appreciate it. We have been trying to get answers to her issues for years and years. She can eat something and within a matter of minutes she is running to the bathroom. She is still on 2 antibiotics to clear the infection too. Just very scary and need input. Thank you in advance

11-02-2015, 05:53 PM
(I'm writing this on my phone, so excuse errors). I have to tell you, reading this gave me chills. This was me 10 years ago, down to the letter (though I had just turned 25). I was on prednisone for 4 months after my initial hospitalization and gained 80 pounds. I always tell people to avoid steroids for long periods of time. They mask symptoms and have god awful side effects. After trying all of the first and second line drugs (asacol, imuran, etc) I started on remicade. It has quite literally saved my life (or at least my colon). I've been on it for about 9 years and have had only minimal flares. I've been very lucky with it, though they did see some disease in a part of my colon that was not diseased before during my last colonoscopy. Luckily, 9 years have brought many new options, so I have a few drugs to fall back on if the remicade stops working (humira, entyvio, etc).

My biggest pieces of advice are these:
1. Don't let her settle - the goal should always be symptom-free. Fight for it.
2. Research all of your options. There is tons of great info out there. Know what you are getting into. These are heavy duty drugs. Side effects can be severe, particularly with remicade and other immune suppressants.
3. Like your doctor. It makes a huge difference to feel like you are supported and heard.
4. Stay positive. IT WILL GET BETTER.

Good luck.

11-03-2015, 06:00 AM
Thank you for your reply! If you don't mind me asking you though...what exactly is your diagnosis? My daughter is a full-time college student majoring in business, plus works three jobs. She is worried this is going to become an even bigger issue and interfere with her life in a big way.