Really worried and have no idea what to do

Ok so here's the thing. I'm 16 years old. Last September, I underwent a colonoscopy and endoscopy because of a positive FOBT test and slight anemia. Both scopes showed nothing, biopsies were negative for inflammation. Now, normally I would be relieved, but I can't get over the fact that I was bleeding and the scopes showed nothing, not even mild colitis or hemorrhoids. I think about this everyday, and I'm really worried that they might have missed something. My parents keep trying to reassure me that everything is fine, that they did the tests and everything is normal. My most recent blood test showed a higher hemoglobin count. But I'm still worried that something is wrong. My GI put it down as IBS, and a family friend of mine said she had the same problems when she was around my age and they hadn't found anything either. But the fact I was having these symptoms and they didn't even find a cause really confuses me. I honestly don't know what to do, I've already taken so many blood tests with the one in September showing anemia, and everything else seems to be normal. What should I do at this point? Should I just try to live with it and move on? Or should I ask for more stool tests to check if I'm still bleeding? I also had a pelvic ultrasound last year to check for fibroids which can sometimes cause bleeding as well, it was negative of course, as well as a digital rectal exam which was fine. Sorry if this was long, I'm just really worried and don't know what to do.

Post Edited (rssssbabe88) : 1/19/2017 5:03:43 PM (GMT-7)

Yes, colon cancer was my main concern. The GI who performed the procedure reassured me everything is fine, as he also took tissue samples which came back normal as well. But I'm just worried about the fact that the bleeding source was never found, especially since my most recent bloodwork came back showing slight anemia again, which my doctor is very confused about because it looks like my blood counts have just been going up and down. I really don't know what to do at this point. I don't really see blood in my stool, but I'm pretty sure it's mixed in based on the FOBT test. Because even if it's not caused by anything serious, I don't want to keep bleeding and end up having to get a blood transfusion or something. I feel like we've done every possible test for this, yet everything came back normal despite the fact that I'm bleeding. Could this be caused by some sort of infection that just hasn't been detected by the tests I've done?

Post Edited (rssssbabe88) : 2/9/2017 12:46:30 AM (GMT-7)

Anemia is now the leading symptom for celiac disease. There is an easy blood test panel that can be ordered by any GP. During
yoour endoscopy did you GI look and biopsy for celiac disease? Often it is not seen on a visual.

http://www.cureceliacdisease.org/screening/

My anemia was blamed on heavy periods. Turns out it was celiac disease. I was not able to absorb iron from my diet. Cd is managed with a gluten free diet. But do not go gluten free until you have completed the testing.

Totally understand that not finding the source of the bleeding is disconcerting. It's good that you're not seeing a lot of blood in your stool though and that you've had thorough testing done. I mention those things to shine some positive light on the situation as I see it's distressing and know how difficult the not knowing can be.

At this point, it seems like it would be good to continue to have regular blood work to check levels and perhaps another FOBT or other tests re-done down the line. If you're taking any prescription medications or NSAIDS those could factor into your situation as well. Just another avenue to look at if you haven't already done so.

Would getting a second opinion from another doc be of help? Sometimes having a fresh set of eyes look at your history can reveal different insights or confirm the ones your current doc has given you. Also, you could bring up your concerns of possible infection.

As for the blood transfusion concern- that's something to talk to your doctor about as well. The more you can communicate your feelings, the better. Hopefully, you have a good support group via family and friends. It's important to feel supported; especially during times of uncertainty.

I would journal about how you're feeling each day and write down any noticeable (anemic) symptoms like severe tiredness, etc. It's good to have a written record of these things so you can see if a pattern emerges/ what's working or not. Some people track food intake, bowel movements, etc. It all depends on what you'd like to track and if doing so makes you feel more or less anxious about the situation.

I actually did have a celiac disease panel and it came back negative, which makes sense since it didn't show up on the biopsies. I actually changed my PCP, and I'm getting a new GI as well (and an OB/GYN).

I actually talked to my chemistry teacher about this and he said that his girlfriend had the same exact symptoms (blood in the stool, irregular BMs, gas, etc.). Had both scopes done and her doc chalked it down to severe IBS. She changed GIs and the new one made her test for SIBO, a bacterial infection in the small intestine. It came back positive and she was treated with antibiotics. She's doing a lot better now but he did say it was incredibly distressing for her as well.

Perhaps I will ask the new GI about these possibilities. I'll definitely ask her about the pill cam and maybe testing for bacteria in the small intestine. At this point, I can deal with anything as long as it doesn't kill me.

Thanks for all the advice you guys. It feels nice to talk to people without them telling me it's all in my head.

daddysgirl23 - The main reason why my PCP referred me to a gyno was because she was suspecting endometriosis as well. She did mention it doesn't usually cause blood in the stool though. And thank you for the compliments, although I personally don't consider myself very smart lol. And I will definitely consider studying medicine, before all of this I was never interested in it but I think this whole experience has taught me a lot more about health and my body than anything I've learned in school!

aloha234 - Thanks so much for the suggestions. I did have another stool test done which showed negative for occult blood, but my understanding is that it's possible to not bleed all the time (otherwise I would most likely be dizzy 24/7). But I think that this stool test, the scopes, the ultrasound, and the rectal exam would be enough for the new GI to not suspect anything is wrong. I will still ask for further testing, maybe not another colonoscopy though (don't really want to go through that again). But the pill cam seems reasonable and I will ask about any possible infection. My PCP said that the gyno will most likely order another pelvic and abdominal ultrasound, so hopefully that turns out okay.

Post Edited (rssssbabe88) : 2/10/2017 3:07:16 PM (GMT-7)