Community Forum

Hello everybody & thank you for welcoming me into the community. 

I am as yet undiagnosed but 99% convinced that I have Crohn's. I've recently had a few tests done including stool samples and blood tests. I've just called the doctors today and they've told me everything was normal which just felt like a huge punch in the gut. I mean, sorry to be graphic, but you could physically see blood in the stool sample I gave - how can it possibly come back normal? Add to that my doctor was supposed to refer me to a Gastroenterologist regardless of test outcome due to my symptoms and the receptionist informed me that no referral has been made. Now I have to wait another week before I can get an appointment purely to ask for the referral. 

Anyway, rant over. I really just wanted to ask if other people's blood tests and stool samples came back normal before being diagnosed? I know before I was diagnosed with Endometriosis, all the doctors were like "what's the problem? Everything's fine!" until they did the surgery and found the endo. Is it possible that tests come back normal despite having problems? I can't bear another frustratingly long battle with this diagnosis too. 

Thank you for all your help! 

Reply posted for saritasarita.

I can relate.  It took a year for me to be diagnosed.  I hear your frustration at normal test results.  I understand that completely.  I too had many normal test results but it’s so frustrating because you know your body and know that something isn’t right.  I have totally been there.

i don’t think any comparison between disease is fair.  They all suck!

if you think it’s crohn’s you might advocate for a small bowel follow through.  Crohn’s is usually found in the small bowel and can’t be seen a lot of the time with colonoscopy or endoscopy.  That’s where mine was finally found and it was moderate to severe at diagnosis but most other tests came back within normal limits up to that point.  

Push your doctor’s hard.  Sometimes we have to really step up and be our own advocates until we get some answers.  Best of luck to you, and let us know how it goes!

Reply posted for saritasarita.

Hey there! Any updates? I can't tell you how much I can relate to your frustration! I've had symptoms of Crohn's for almost 3 years now and every single doctor kept telling me that everything was normal and that I just had IBS. It took a colonoscopy (which revealed ulcers in my terminal ileum) and an MRI (which showed thickening of my bowel wall in my ileum) to finally get the docs to even consider that it might be something other than IBS. I got CRP and Calprotectin tests done in October and both of those came back normal - so aggravating because I certainly did not feel normal! I've now seen more than five different GI doctors and IBD specialsts because I was having trouble finding someone who actually listened to me and took my description of my symptoms seriously. Hang in there! If at all possible, I highly recommend switching doctors if you feel like you are being mansplained to (the worst!) or if you don't feel like you are being taken seriously. Remember: you know your body best of all! I'm still feeling frustrated myself because I don't have a definitive diagnosis (the most recent doctor I went to said that I "could be in the early stages of Crohn's") but I know I'm getting closer. Just know that you are not alone!  

Reply posted for saritasarita.

I see now! I guess my docs have been pretty good.  My GP diagnosed me first time, although it took me some time to accept the diagnosis.  I had a friend who was a commercial pilot who had an illness they could not identify but he couldn’t fly till hey did. We both got sick around the same time, but I had already had my colon removed before they figured out what he had. That not knowing what is wrong will just eat you up.
After I got the colitis fixed, I came down with crohns.  That did take forever to diagnose.  While crohns sucks, it is not nearly as bad as the colitis was.  Possibly because I no longer have a colon for it to attack.

Reply posted for charbs.

Hi. Thank you for your reply! No, I absolutely don't want to be sick but when you've been feeling so sick for so long, it's frustrating not to get answers (and often not be believed). 

For over a year I've had random bouts of diarrhea which send me into a cold sweat every time but in the past four months or so, it's gone from being every couple of months to twice a week, on average. Sometimes the bouts have lasted 5/6 days with relentless diarrhea no matter what I ate and a sense of urgency so strong that I've almost not made it to the toilet a few times. There's also blood and a lot of mucus being passed. It's got to the point where I've stopped making plans, especially where eating and drinking are involved, and I don't eat anything before I go to work until I get home 'safe'. 

I don't think it's unusual to feel upset at negative results because I'm just ready for some answers and some help, no matter what it is. As I said, I almost gave up trying to get a diagnosis for my Endometriosis because so many tests came back perfectly normal, the doctors made me feel like I had 'hysterical woman syndrome' before they finally operated and saw that my entire womb was fused to my bowel. 

Thank you 

Reply posted for saritasarita.

Do you want to be sick?  I can’t imagine getting a good report from my doctor and saying it felt like a punch in the gut. What symptom have you had?  I had a lot worse symptoms with ulcerative colitis than with crohns. With crohns it’s just basically diarrhea and chronic fatigue.