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Old 02-07-2013, 06:19 PM   #1
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Possible IBD with normal blood/stool test results?

Hi all,

For the past two months, I have been having moderate to severe abdominal pain, blood and mucus in my stool, alternating diarrhea and constipation, dizziness, fatigue, and nausea. At first I thought it was my appendix, though it was not showing up on a CT scan. I had my appendix removed just before Christmas due to some inflammation, but the pathology report showed that it was normal. That led me to a GI, to investigate the possibility of IBD or Celiac. Prior to my appointment with the GI, my blood tests for Celiac came back negative and my CBC showed anemia. I started on iron and vitamin c supplements to help with that. My GI ran more comprehensive blood tests, looking for inflammation or deficiencies, as well as a stool sample test. I found out today that all of my tests came back normal. I will be having a colonoscopy soon, but I have some questions.

Is it likely that I could have Crohn's or Ulcerative Colitis but still have normal blood tests? I am really confused about how my stool tests could come back normal, since there was definitely blood and mucus in my sample. I have also had an abdominal x-ray, as well as the CT scan, but neither test showed anything. I know that the colonoscopy is necessary to confirm a diagnosis, but does it seem like my symptoms could mean IBD? To provide a little more information: I am a 23 year old female, and have had what I was told was "mild IBS", which to me means a sensitive stomach and occasional bouts of diarrhea that go away by itself. I have normal periods, though I did have ovarian cysts in the past, which leads me to think that this is not endometriosis. I experienced frequent fatigue and dizziness before all of this started, but have not found any causes. I have had very little appetite during the past 2 months, but am trying to eat as much/as well as I can. I have been keeping a food/symptom journal but have not found any connections. The pain started out mostly in my lower abdomen, especially near my navel, but recently I have also had pain under my ribcage.

Thanks for reading, and for any advice or answers!

 
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Old 02-07-2013, 07:25 PM   #2
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Re: Possible IBD with normal blood/stool test results?

Blood and mucus in the stool does occur with IBD, but also with infections, and sometimes for no identifiable reason. Stool specimens are checked for infection, so a normal result just means no parasites or bacterial infections. Inflammation doesn't always show up on blood tests, but being anemic indicates a problem with iron absorption or sufficient blood loss in the stool to drop your red cell count. The fatigue and dizziness is likely from the anemia. Some episodes like this turn out to be a "non-specific colitis" which goes away on its own. If inflammation is found on colonoscopy it would be called colitis. Crohn's affects the small bowel (end of ileum, last portion of small bowel) and may require a small bowel follow-thru xray to detect it.

Last edited by ladybud; 02-07-2013 at 07:26 PM. Reason: typo

 
Old 03-18-2013, 03:41 PM   #3
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Re: Possible IBD with normal blood/stool test results?

Thanks for your response, ladybud. Since I last posted, I have had a sigmoidoscopy, colonoscopy and upper endoscopy. The GI found focal active colitis in the sigmoidoscopy and some inflammation in my esophagus during the other scopes, but neither of those GIs think that is significant. I saw another GI, a specialist in IBDs, last week and he is going to look at all of my biopsies himself, but he said that because my bloodwork and scans have all been normal so far, it is probably IBS. Obviously it would be great if I don't have Crohn's, but I'm not convinced because of some of my symptoms, like continuous rectal bleeding (no one has found the cause yet, though I had some small internal hemorrhoids cauterized), anemia, some vitamin deficiencies (have improved since I started taking supplements), weight loss, etc... The new GI is trying some new meds with me: Bentyl, Citrucel, Align, and Prilosec, so I guess I'll wait and see how that goes. But do these symptoms sound like IBS? Should I push my doctor to do an MRI, small bowel follow through, or other tests? Has anyone experienced normal CT scans and mostly normal scopes but still been dx'd with IBD?

Thank you!

 
Old 04-26-2013, 02:54 PM   #4
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Re: Possible IBD with normal blood/stool test results?

I was misdiagnosed with IBS for a year before being diagnosed with crohns colitis, crohns limited to the large intestine. I had blood and mucus, went through all the tests except a colonoscopy and was told I had IBS and that the blood was from hemorroids. Finally I ended up in the ER after a year of symptoms and was properly diagnosed.

Eight years later I have blood and mucus, redid all the tests and they are all negative for inflammation and again its blamed on IBS. But this time they can see scarring in my intestines (pseudo polyps) that is proof I do have crohns so they diagnosed me with both. If I didn't have scars they would probably say I don't have crohns.

It's a long path to diagnosis and you still have to fight for it once you do get it but u have to insist that they keep looking. Once they see IBS they assume its IBS and not IBD. If you switch GI doctors, they all want to "take a look for themselves." The one test that did turn positive was PANCA, it's an IBD antibody panel. If you haven't done it I suggest you ask for it. It helps argue against IBS. And only take tests when feel bad because they will refer to them every time even though you may feel different than you did that day.

As for what to do in the meantime, keep trying different medicines until you find something that works. Bentyl I find works if I am going a lot. Painkillers just make me constipated and worse later. Lomotil works for if you must get through something without using the bathroom, events car rides and such. Heating pads help at times, so do moist wipes.

To me, it doesn't matter as much what I eat only no dairy, low fiber and smaller meals. They kept telling me to add fiber, which always makes me worse. Listen to your own body though.

I can't seem to figure out how to tell the IBS from IBD in my own body. Sometimes I feel horrible and they say its IBS. Then I feel not as bad and they say my blood tests are elevated. It's literally a crapshoot.

Hold on and keep fighting for answers. It does feel better when they give you a proper diagnosis because you don't feel like its all in your head. You want to be like "I told you something was wrong!" Hope you figure it out soon.

 
Old 04-27-2013, 08:29 AM   #5
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Re: Possible IBD with normal blood/stool test results?

I do hope you have been tested for celiac disease which causes malabsorption and can be assoc with IBD

 
Old 04-29-2013, 04:09 PM   #6
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Re: Possible IBD with normal blood/stool test results?

Thank you both so much for your posts. I was tested for celiac and both the blood test and biopsy came back negative. I have tried several anti-spasmodics, which didn't work and gave me some bad side effects, and my GI is now talking about trying anti-depressants for the pain. I'm hesitant to try that, since I'm already on meds for depression and anxiety and don't want to change the delicate balance it took me so long to find. The rectal bleeding has gotten a little better, after using hydrocortisone suppositories, but everything else is still persistent or worsening. I'm seeing my primary care doctor again tomorrow to talk about testing for some other autoimmune conditions, since my fatigue, dizziness, night sweats, etc. have been a problem that the GIs haven't addressed. I'll ask about the PANCA antibody panel--I don't think I've done any of those tests yet. I just don't know if I should stick with my current GI or try another one--I understand that they haven't found anything in my scans, colonoscopy, or endoscopy, but I'm just not confident that IBS explains everything. I'm so tired of this whole process--I haven't worked in months and barely leave my bed--but I'm going to keep fighting for a diagnosis! Thanks again for all of the help.

 
Old 05-13-2013, 11:38 AM   #7
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Re: Possible IBD with normal blood/stool test results?

I was so happy to read your post this evening but not so happy for you. As I too myself am going through the very same situation but for the last three years and I still have yet to be diagnosed properly.

I had a bowel resection in 2010 and was hospitalised numerous times after than and most recently has a blockage and surgery in Oct 2012 and a vulvulus in November 2012 and another surgery.

Bloods too come back normal most of the time and stool samples and it's so frustrating. Because like you I'm having night sweats, mouth ulcers, diarreah and constipation, mucus, and absolute fatigued out of it. I used to live in Bahrain and was diagnosed there with Crohns and since I moved to Dubai they have again gone back to IBS. I just came out of hospital after been admitted for two weeks and was given pethadine only and nothing else and I decided to change doctors again as I was made to feel like I am going crazy in the head. My GI at the time insisted it was nerve ending pain from all the surgeries and I had a lumber sympathetic block last week. Needless to say it didn't work. I have gone to another new GI and I started on Pentasa on Saturday.

Don't give up, keep going until you get a reply and a diagnosis. We ourselves know our own bodies and we know what we feel is incorrect. Its so frustrating when doctors brush us off with the IBS diagnosis when you know deep down inside something else is truly going on.

Let me know how you get on and am sure we will all get thru this

 
Old 05-16-2013, 02:57 PM   #8
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Re: Possible IBD with normal blood/stool test results?

Thanks for your response Juanie. I'm really sorry you're struggling--I hope the Pentasa works. I'm currently trying Amitriptyline for the pain, though it's still too early to see results. My primary care doctor told me to see an endocrinologist rather than testing my adrenal function herself, and also didn't know anything about IBD specific antibody panels. I'm not sure if I want to ask my GI about it--she is so focused on it being IBS only. In the meantime I'm crossing my fingers and trying not to stress too much. Thanks for the reassurance--I will certainly update if I get news!

 
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