Diagnosing Crohn's

Hello everyone! I apologize in advance if this gets lengthy.
For years, I've been having issues with my stomach. It comes and goes, last for periods of days to weeks and even months where I will have terrible cramping, diarrhea (especially in the mornings and after i eat), headaches, mucus in my stool, fatigue, nausea, vomiting, joint pain, etc. I have been to the doctor a few times for this and every time have been told it is probably stress or maybe IBS. And that's it. I have a family history of IBD. My grandmother and uncle had it. My mother had to have all of her large intestine removed due to redundant loops and my aunt has ulcerative colitis.

For the last 4 months it has been the worst it has ever been. I am having terrible cramping and diarrhea after every meal, terrible pain when I wake up, near daily headaches, joint pain so severe in my hips that it hurts to walk, fatigue, psoriasis like rashes along my hairline, and more. I went to a doctor two weeks ago to establish primary care and saw his PA. For the first time ever, someone listened to me. She told me that no, all of this is not normal. She ordered multiple stool and blood tests, which I completed last week, and told me to immediately book an appointment with a GI. I got a call last week that they got the results of my tests. I showed as extremely deficient in Vitamin D. And one of the stool tests I tested positive for Fecal Lactoferrin, which is apparently a marker for inflammation in the colon and is used to test for IBD.

I had an appointment today with a GI. He seemed to indicate that he doesn't think this is IBD, mainly because there is no blood in my stool and I am not underweight. Most of my pain is in my lower right side (chronic) and I am having pain in my left side after eating. He performed a Flexible Sigmoidoscopy today and took some biopsies. He said visually, he saw no inflammation but he did not go far. He also had me do another blood test for C-reactive protein and a urine test.

I guess my question is what should the next step be? If the biopsies come back clear and he wants to let it go at that, what would you all recommend pushing for? I want to make sure we are thorough, especially since he checked my left colon/rectum and my main areas of pain are my right side. Also, not sure if this is important but I am a 30 year old female, no children.

Any advise/help would be greatly appreciated! Thank you all!

Thank you for replying! Yeah, I will see what I can do. Unfortunately, I have an HMO so I am limited in my choices, but I may be able to switch to another physician within the practice. I was a little put off because he mentioned that it was even possible that the positive marker for inflammation on the Lactoferrin test was a false positive. I will push for a colonoscopy for sure though. Thank you again!

Your sever hip pain should be checked for Ankylosing Spondylitis . X-rays of hips and spine first then blood test should be done .

Thank you all so much! It honestly makes me feel better, I felt like I was going crazy and like it was all in my head. I am honestly contemplating reaching back out to my PCP (because she is amazing) and asking if she can reorder the fecal tests for Lactoferrin to see if it shows positive again, just for my peace of mind. I feel like if I can get the test redone and if it shows positive again, he will have to take me more seriously. Ever since he's mentioned that is could have been a false positive, I can't get that out of my head and I'm starting to doubt my symptoms. I really think my weight is what is making him not take me seriously. He mentioned my weight, exercise, activity, etc. a few times. I am not obese by any means, but I am a little overweight so I think that immediately put him off the idea of any IBD.

I also took a look at my chart online this evening and noticed in addition to the C-reactive he ordered a T4 blood test (for thyroid I think), and I'm wondering if that it is because I realized my resting heart rate was recorded as 49BPM (?!) which seems super low to me.

Ughhhh... I feel so overwhelmed right now, and just want to know what is wrong with me! I do appreciate all the kind words and help here, I feel so happy to have found this community. I am thinking next steps are to wait for the test results from this GI, request the Colonoscopy, ask my PCP to reorder the fecal tests (do ya'll think this might be a good idea?), and possibly ask to schedule my follow-up with a different GI in the practice. I am bound to this practice due to the HMO, but there are like 5 diff. doctors, so there has to be someone better.

They did order the CRP, but I haven't gotten the results yet. They did not do fecal calprotectin, only the lactoferrin and also a fecal test for ova and parasites. I am not sure about the white blood cells in stool or occult red blood cells.

That's good to know.. my doctor is much older, so I think he might be in the mindset of the past stereotype? I will be sure to push though for a colonoscopy at the very least. Thank you!

Keep pushing for answers. Change doctors. Sometimes your blood markers won't show Crohns is active even though it is. My markers only went up 1 point so they didn't think it was bad untill they completed a colonscopy. Then it was well...you have this many fistulas and now you have sepsis. Oops sorry about that...

Hope you find some relief.

Clo

Hey everyone! So I'm still waiting to hear from the doctor's office on the results of my biopsies, but I was able to access my blood test results directly through the lab (even though the dr. still hasn't even called with those yet -_-)

My thyroid was normal, urinalysis looks normal to me, and my CRP is at 8.0. I also realized that my GP also ordered a CRP test on 2/10 and my result then was 6.1, so it seems to have risen two points in less than 2 weeks? I am not sure of the normal or elevated range of CRP so not sure if this is cause for concern. Still feeling crappy, pain and diarhhea. Thinking of trying a partial liquid diet to calm my stomach as solid foods of any kind seems to make everything worse. Will update with more info as I get it!

Get your primary doctor to order the stool test for fecal calprotectin.

Hi Everyone! So my GP had re-ordered the tests for Lactoferrin as well as the Calprotectin. I got the call this morning that the Lactoferrin was positive again, but they said the Calprotectin was negative. Update: my level was 15.6, so definitely pretty low

I have a follow-up appointment with the GI on Friday, so I am going to take this info to him. I am still going to push for colonoscopy, are there any other tests you think i should mention? Also, I am wondering what would cause positive lactoferrin but negative calprotectin and if it might not be IBD then? I am so confused now, do you all think I still need the colonoscopy?

Post Edited (Jordan8734) : 3/8/2017 11:18:08 AM (GMT-7)

Yes it's a long process to be diagnosed.. I actually do present with blood and a lot of mucus, severe pain, tenesmus. I was ordered CRP blood tests and a CT scan both of which came out clear, yet here I am 6 months later and having another severe bout of it. I did get a referral for a colonoscopy but the GI went on friggen med leave! He said I may have Chrons, UC or microscopic colitis? but I still need the scope and biopsies.

I was also originally given IBS drugs with no formal testing. I believe that is what sent me to the emerg 5 days after starting them this past summer , and after my CT I was told to stop the Dicetel and I given OTC drugs and sent home because "it wasn't surgical" .. I still have no diagnosis.and I'm havin another "flare" whether it be IBS or IBD there's a lot of pain and I had some blood this weekend. I'm hoping to get my scope pushed to be more urgent. In Canada especially in the Atlantic Provinces some people are on wait lists for years, especially if it's not "surgical or urgent" . Youll get there, keep pushing for it.