blood in stool with no inflammatory markers

I've been posting about my concerns about my daughter. Here's the new thing. She has been diagnosed with ulcerative colitis. She has been on meds for 5 months and they are not working. She is having constant blood in her stool. She just had a positive fecal occult blood stool test. But she has 0 inflammatory markers. Sed rate low normal. C-reactive protein also low normal. Here's my question. If she's not bleeding from ulcerative colitis (which would show inflammation) could EDS make her have blood in her stool? We don't have an appointment to see a rheumatologist till September some time. She is supposed to have a capsule endoscopy to see what's going on. I feel so helpless. Even the gi nurse was puzzled as to why she had active bleeding and no inflammation. I am dreading the answer. Also, does this warrant an ER visit? Please respond...thank you.

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Hello Tummyache,

I am sorry for the pain your daughter is having. It is difficult to say that her EDS is the cause of the bleeding when it is not known from where the blood is coming. If the blood is not all occult, some clues may come from how the blood looks. The brighter red the blood, then the closer to the "exit" or rectum the source of bleeding is. If the blood is dark or tarry looking, the higher up the GI system is the source. There is no way for us to determine over the internet if this an emergency or not. Any time you see symptoms that give concern, it is better to be safer than sorry...particularly with a child. Is it possible to call her pediatrician in the morning, like an "Ask a Nurse Line" to see what they recommend as they can bring up her medical history.

Ulcerative Colitis is an autoimmune disorder that is believed to be genetic. It can flare up and as well as "disappear" for days, weeks, or years. I wonder if the symptom of occult bleeding is preceding a flare or continuing following a flare and that is why the inflammation markers were negative. I don't know if this is possible as I am not a doctor.

Another thought was if it possible for her to have an ulcer in her stomach due to NSAIDS? this can also present as abdominal pain and bloody stools.

I hope the doctors find the source soon.

Gentle hugs....

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Thanks for the reply. She was tested in the ER about 2 months ago and her inflammation markers were also negative then. But she didnt' start having blood in her stool till about a month ago. So her inflammatory markers have consistently been low yet she's still bleeding. I spoke with the Gi office yesterday and they agreed her results were very unusual but since they are planning on doing a capsule video endoscopy they didnt think she needed to go to the er...just yet. I'm on pins and needles. Nothing has been confirmed as far as EDS and the rheumatologist she saw admitted she was hypermobile and had vascular issues visible on her legs but denied EDS and Lupus. I didn't like her at all. So we're going to Shands but I dont want to wait if it's possibly serious. Sigh. This is very hard.

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We had a very similar experience with our daughter two years ago. She went through a 6-8 week period with blood in her stool (dark, tarry blood - not hemorrhoid red). We traveled 4 hours to the nearest children's hospital for a colonoscopy which came out clean and an upper GI series. The upper GI series didn't show anything, however, they didn't complete the entire test because she didn't pass the barium completely after 6-8 hours. So, they were never able to get a look at certain places.

We were sent home and told that if it continued or flared again, they would do a capsule endoscopy and were given some advice on her diet and some things that could be irritants. We modified her diet and things seemed to calm down.

Last year she went through a similar "bout" for about 2 weeks and then, once again, things calmed down. We didn't have time to get up to the children's hospital and get the capsule endoscopy completed.

What the doctor said to us that helped calm us was the fact that overall, she appeared healthy and was growing. She was able to function normally and even compete on a swim team and practice 60-90 minutes a day. It's something we continue to watch and she certainly knows to keep an eye out for it and alert us if she sees anything of concern when she goes to the bathroom (the first time this happened we learned about 1 month after she knew it - we weren't happy!)

I'd love you to keep us updated on your progress. Sorry I don't have the "answer" for you . . . but wanted you to know that you're not alone with this!

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If you do go to Shands, Dr.Jolley in peds.gastro.has been treating another teen with EDS. I do have some connections there, so please let me know if there's anything I can do to help.

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