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Negative biopsy, positive colonoscopy?

Hi,
I've been having so much trouble with a diagnosis lately. I've been having symptoms for almost three years now- never actually went to a doctor until July though. My boyfriend has crohn's, and I told him I had symptoms just like him, so he kept pushing me to go to a doctor. I have severe cramps (lower abdomen- I should mention that they are not menstrual cramps, got that resolved at the ob/gyn and feel much better on the medicine he prescribed), diahrrea, nausea, weight loss, severe pain in my left knee, (heard joint pain is also common with crohn's? Also. Have no idea why it started to hurt-just kind of started out of no where about a month ago) loss of appetite, and I am exhausted all the time, despite lots of sleep. Usually go Around 1-5 times a day in average.. I guess I should aslo mention my mother has crohn's as well... Finally was able to schedule an appointment July 16th ish. I got blood work done, and stool samples... she thought I had a parasite; despite the fact that I have family history of crohn's. Blood work didn't have any markers, and stool samples were negative as well... then went back about a month later, and was issued a colonoscopy and endoscopy. I was to get that done a little over a week after the second visit. Prep was just awful. Absolutely awful. Although the mag citrate wasn't bad at first, it caused some issues. I was about half way done with prep when I started bleeding (from the butt of course) and heaving, but never vomited. My My mom said I shouldn't finish the second bottle and take the second laxative. I ended up drinking 1/4 of the second bottle. That was a mistake. Bled quite a bit... I was so raw down there that I was in tears everytime I went. And of course it burned! It felt like I was on fire. Ouch. Also, never again will I eat blue jello during a prep. Never. Lol. Went to get the procedure done the next morning, and as expected, I was anxious. They put in my IV, and took me into the room and put me under.
Woke up, and the first thing they tell my mom is that they found ulceration in the Terminal ileum... same exact place she has it. Found some other weird stuff here and there that they didn't recognize, so they biopsied it. Doc said she was certain I have crohn's. Got the call from the pathologists about 14 days later, and biopsy was negative. What? I was very confused. I was looking forward to actually being able to fix whatever I had, but my gastro (not the one who performed the colo/endo) said she doesn't want to do anything when the biopsy is negative. Called her about a month later after the procedure, and she said, "I don't kow what it is and I really don't know what to do about it. Come back in three months and we'll do another colo/endo and some more test." Really? My mom doesn't want to put me through that again since I'm so young, and she was very upset that we did all of that just for her to say, "come back in a few and we'll do it all over again". Upsetting. Here we are, 4 months after she called... still have same symptoms- some are actually worse.
When I went to my primary today, she asked if I had IBS. (I initally went to her when I had the symptoms, then she said she wanted me to go to the GI specialists) I told her I don't know, and my GI never diagnosed me. Apparently on the medical records, she wrote down "Most likely IBS". That's weird, because the GI never told me ANYTHING about that. She said I might have IBS BEFORE any procedures were done, but NOT AFTER... Kind of sketchy... I just feel so lost. Anyone have similar experience? One doctor says yes, the other says I have no clue. I would appreciate any help... thank you guys.

P.s., not many docs are in the area I live that are within our insurance- closest one (first GI) is 32 miles away. I'm seeing a new one about 60 miles away... almost double! :/ still need to schedule the appointment though.
And sorry this is so lengthy! I'm just so cofused about my situation.

Thanks again guys.
-Sarah
 
Last edited:

fuzzy butterfly

Well-known member
Hi Sarah. Sorry you need to be here.. Have you been given fecal calprotectin test. This test is pretty good at finding crohns or colitis. Also a scan may show up something they cant see via scopes. Hope this helps n you get dxd soon n onto the right treatment. Best wishes 💕
 

my little penguin

Moderator
Staff member
Get a copy of your pathology report.
Most pathologist can't check the crohns box on the pathology report unless they see non caseating granulomas - which are only found in 30% of the cases.
Please get a second opinion

Good luck
 
If it weren't for the fact that you would have to have the tests again, I would say see a second doctor. Keep us updated.
 
Wow... I have actually never heard of that test! Of course, they didn't really want to go any further with trying to diagnose me anyways. I will definitely look into getting my pathology report as well. They never offered the scan either. The only thing they want to do is scope me... I guess we'll find out what the other GI says about the case.

Thank you guys so much. You are such a big help! I appreciate it <3
 
The fecal calprotectin test will not dx CD. It will only determine if there is inflammation in your bowels. The inflammation can be caused by various things not just CD.

It's a good first line test to determine if more tests are warranted and once IBD is established it can be an effective tool to monitor active flares. A colonoscopy is still the gold standard.

I agree with my little penguin some pathologist and GI won't check the CD box unless they see granulomas present in the biopsy which can easily be missed.

Going forward to the next GI appt you could have your GP go ahead and run the fecal calprotectin stool test, the results take about two weeks and then present those results to the 2nd opinion GI. From there that GI can take your path results and other tests and do a records review to either get his opinion or set up more scopes and possibly imaging like MRE.

I hope you soon find answers.
 
Interesting. I'm just awaiting the call from the second GI for scheduling; my first doctor was required to fax over the records first. Not many good doctors in the area I live, but I'm hoping the second opinion will really make the difference and help me on my way to diagnosis.
Although, they didn't see a whole lot of inflammation when I got scoped... was I just not in a flare?
I guess the FCT will help me out with that-I will be sure to ask him about it when I go.
Thank you guys so much. You're a great help <3
 

Lady Organic

Moderator
Staff member
i would find a way whatever the means it take to talk again to the first GI who saw your ulcers. I'd go find this doctor in person in the hospital if you cant have an appointment with him/her. Just go and dont be shy. This is how I met my first GI. I just ran into this random doctor after his work shift asking for help. The current GI and the GI who diagnosed you should have a discussion about your case. Have they talked together?

meeting a new GI will end up most likely for himself to order another colonoscopy before giving opinion. This may take a lot of time. Doctors wont prescribe medication on a patient they havent evaluated fully, unless the patient has a clear and confident diagnosis with reports and with already good treatment.
 
Well, the first GI said that she collaborated with some other docs, but I'm not 100% sure if it was with the one that did the scopes, since they didn't really talk about what they did. They were very vague with any info... unfortunately, I'm not sure if I can actually have the doc that scoped me as my GI, since I was told she didn't accept our insurance plan. I could ask again though- and I know the one I will go see soon is definitely going to talk to the one who scoped me since he was very interested in my results and what the docs think. I will work stuff out with them... (new doc actually seems to care about my case rather than previous one)
If the new doc wants me scoped, that's fine... I just don't want to do one for the same doc and have her say the same thing... "I don't know. Come back in a few". I am hoping the second opinion will really make the difference.

Thanks for the help- xx
 

Lady Organic

Moderator
Staff member
good. It is always best to have a GI who is collaborative and proactive. (not all doctors are) This new one sounds promising. Even if the one who scoped you cant take you as a patient, she should be able to tranfer her impressions about your case and be open to a discusison with your new GI. good luck.
 
good. It is always best to have a GI who is collaborative and proactive. (not all doctors are) This new one sounds promising. Even if the one who scoped you cant take you as a patient, she should be able to tranfer her impressions about your case and be open to a discusison with your new GI. good luck.
Amen
 
So new update... this may sound weird, but is it normal when you "go" to find mucus? I mean, it's not a little bit either. I find that I have particularly strong abdominal pain before that evacuation as well. And also, is it something I should tell the new GI, or is it just a completely normal bodily response to evacuation?
 
Hi Sarah
Your story sound so much like mine. Ulcers found but nothing on the biopsy = go away there is nothing wrong with you. The scope doctor told me I was ill and needed treatment, the internist told me I needed treatment, the GI told me there was nothing wrong with me.
My advice to you is to get all the results you can: photos from the colonoscopy, the full pathology report.
And Lady Organic is right. If you can, speak to the person who did the colonoscopy and take the results with you as a reminder. In my case, I had to go through the hospital mediator service (patient advocate service) who heard my story and then arranged a meeting with the scope doctor. Normally he does not advise patients at that hospital. That was over a year after my colonoscopy, and only then did I start to get treatment - from my family practitioner. And I started to look for a new GI.
It is very frustrating. You need a doctor who takes a full medical history and can join up the pieces, and not someone who just concentrates on the biopsy conclusion and nothing else.
Who goes with you to the doctors? Make sure you take someone who can stick up for you too.
Good luck, I hope you get your health back soon.
 

Lady Organic

Moderator
Staff member
So new update... this may sound weird, but is it normal when you "go" to find mucus? I mean, it's not a little bit either. I find that I have particularly strong abdominal pain before that evacuation as well. And also, is it something I should tell the new GI, or is it just a completely normal bodily response to evacuation?
yes report this. after a while a being uncomfortable, we come to not even remember what is normal or not... Painful bowel mouvements with only expulsion of mucus is definitely not normal. I get this when I am sick.
 

Lady Organic

Moderator
Staff member
furthermore, I would suggest that you write down all symptoms you have and the number of times you have them/day so that the doctor can have the best idea possible of the situation.
 
Thank you all so much. Will report to new doc- and will write down new symptoms. I appreciate all the help. You are all amazing people <3 I can't thank you enough.
 
Also, usually my mom comes with me to the docs office, but my dad did go with me once... he was a little lost about why the doctor wanted to immediately scope me after the other tests were inconclusive, lol, but now my boyfriend wants to come with so he can explain that he had the same symptoms and ended up having to get put on remicade, so I guess we'll see. I called him crazy for wanting to do that, but he's really worried that whatever is going on will get worse, and need extreme treatment or something. (He's weird, lol) His doc is an amazing guy though... really knows what he is doing. (He's been in practice for about 35 years. That's a lot of poop!) He's been messaging his doctor to see what he thinks, so I may have to see him as well... even though he's about 2 hours away. (Decent pediatric GI's are extremely hard to find in the Midwest) so I possibly mag be able to get a third opinion, just to make sure I'm not be medicated for the wrong thing. One of my boyfriend's friends actually was put on the wrong medication for the wrong disease and it made him extremely sick... had to go to the ER it was so bad. Don't want that to happen to me, that's for sure.
I have my scoping pics currently, but not much more than that. Previous GI is supposed to be faxing over the records, and new GI will be looking at that. Going to see him in a few weeks. <3
 
Alright, so I just went to the GI and he is convinced it's IBS and IBD, which also results in the bad reaction to dairy. First thing he wanted to do was the fecal calprotectin, and some blood work- a good doctor really makes the difference! He was super nice, and really took time to understand what was going on. I will also be doing a pill cam next month, and possibly scopes if necessary... I was fortunate to have brought my scope pictures with, because the other doctors did not fax them over after multiple requests. He couldn't say anything for sure without the pathology, but IBS, IBD, and lactose intolerance is what he is hypothesizing. He thinks the combo is interesting- hence the tests ordered immediately.
 

fuzzy butterfly

Well-known member
Hi thanks for the update. At least he is being pro active with the tests n such, which is good. Hope you get a definate diagnosis soon. Then the right meds to sort things out for you. Take care n best wishes 💞
 
He was shocked the previous GI didn't take furged medication, or even give me any meds to try. He is having me try probiotics just to rule out bacterial possibilities.
And which pill cam should I do, the 8 hour, or the 12 hour? I'm just worried the 8 hour won't do it.
 
Hey, it's been a while, and I've done the immunochemical test, and the fecal calprotectin test. Should get results soon, as I submitted them monday, but with good news I bring bad (?) News... finding much more blood now, and I've lost a little more than 15 pounds. Any advice to try and bring the weight back up? I'm drinking some shakes that are supposed to sustain it, but it's not working very well... thanks!
 
There is another section in here. It is called Diet, Nutrition and Fitness. You might want to posd the same question there. Best to you.
 

fuzzy butterfly

Well-known member
Hi DJ nice to see you again .hope the results can help you. Ron is right post in the diet etc section. Should be help there. though poatoes (mashed with butter)are good for weight gain if you can tolerate them.Best wishes 💕
 
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