Hi there if anyone here has gotten any answers my daughter is 15 years old has been through an endoscopy colonoscopy endless blood tests And scans And we are getting absolutely nowhere the doctors are stumped the most we're getting is she has some sort of inflammation most likely being caused by a form of colitis
She is also experiencing symptoms of dysautonomia (POTS) causing her to experience constant body aches, pains and exhaustion
She was taking pentasa at 3,000 mg a day which seem to alleviate the bloody diarrhea And abdominal pain that initially alerted us to the problem but her levels are still in the 3000s and refuse to drop
These problems are causing her to live a life of stress and anxiety that is negatively impacting her quality of life as parents were naturally wanting to do anything we can to help if anyone has any suggestions they would be greatly appreciated 🙏
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Eric_Cartman
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I might help to get her a good quality pro biotic while the doctors are working out what's causing this. Start off with kefir if she likes yogurt it's just like a yogurt drink and can be bought from large supermarkets Or health shop Or Bio cult probiotic for gut it's in an orange box.
My daughter use to have a lot of gut problems and bio cult really helped her although her main issue was urgency, food straight through her and my pain, thought to be IBS.
I have had ulcerative colitis since 2006 I started with IBS, bowel problems run in the family. The main concern here would be the blood loss, make sure that she gets blood tests for anemia as long periods of blood loss can cause this and will make her very tired and lethargic.
It appears lots of younger people get bowel problems there days it is caused mostly from.nsf diet and high stress. But whatever the reason she's become ill eventually they will get a diagnosis.
They will always start with pentasa as they don't like to give patients so young the stronger drugs I have unless essential.
It can take time to get a confirmed diagnosis but it sounds as though the doctors are thinking it's Ulcerative Colitis, a form of inflammatory bowel disease. Is it her calprotectin level that is 3,000? This shows inflammation. Pentasa is a first line treatment but if it's not enough to calm symptoms they will try something stronger like steroids. Fatigue and joint pains are associated symptoms of the condition. In the meantime, she could try keeping a food diary for a few weeks to see if anything in particular makes her symptoms worse. Hope things improve soon!
Sorry to hear about your daughter. I remember the first medication I was given did not agree with me I can't recall what it was called but it may have been Pentasa. Other first line meds are Mesalazine (i.e. mezavant or salofalk) which I found effective. Enemas tend to be more effective and quicker acting than tablets but of course it is up to your daughter and the doc if that is the way to go. If she doesn't respond to the first line treatment there are other options including biologics like Entyvio (Vedolizumab). If you want to try the herbal options (after clearing it with your doctor) the only two I found effective for my colitis were Slippery elm bark powder (3 teaspoons a day one before each meal) and Black Cumin oil aka Kalonji oil aka Nagalia Sativa. Obviously clear that all with your doc first but just passing on my experience as I was diagnosed about the same age as your daughter. I wish you luck and hope your daughter recovers soon.
my daughter was diagnosed with crohns. with a ton of run around with meds we then went to a functional dr. she has non celiac wheat/gluten sensitivity. we only used a lot of supplements and it does take a while but last test the inflamation was so minimal. so the celiac test will be normal but she would get same symptom as one with a positive test. and definitely no dairy . once compromised we cant process the dairy and can make you feel worse. today she is thriving and only taking a multivitamin but she stays on a gluten free diet.
My 15 started with diarrhea as well. Eventually ended up with a Crohns diagnosis.
Is your 15 yo on any other medication of any sort?
Some foods clearly exasperate my daughter’s experience with diarrhea , especially processed or high-fat or high sugar items. Her doctors are going to be putting her on medication for Crohn’s, but in the meantime, we had her on an exclusion diet. Her symptoms got better overall but her calprotectin levels are still high, which is why she will be going on meds.
Have they also tested for infections? My daughter at one point had a yersinia infection (found this in the stool test). I’m assuming they’ve checked h pylori, and other gut bacteria to rule those out?
My son started with that same FCP. If she hasn’t had a MRE to see the small intestine and an endoscope with biopsies to check esophagus and stomach, she needs that to rule out Crohns. Most people say that you need a biologic for treatment. I bet she needs stronger medication. If your dr isn’t helping, maybe get another opinion.
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I'm new here : Ulcerative colitis
Old Crohnie newbie here 
IBD since 2009 temp ileostomy
Joint pain and nosebleeds!
