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desperate to get a diagnosis...

I am a 20 years old woman and have been struggling lately. I’m currently in what I’d consider my 4th flare up. The first one happened in summer 2018 and lasted 10 days. Went to the clinic, they told me to get a blood and feces test, didn’t do the feces ones because I felt better. Then one year later, approximately at the same time, I had another flare which lasted for 3 weeks. Went to the doctor again, did another blood test, everything seemed normal besides my white blood cells which were a little high. Had another flare from mid-august to beginning of November. My doctor said it could be IBS, made me do a calprotectine (came out in the grey zone (90-100 if i remember correctly) and ordered a colonoscopy which I passed on December 19th. I was at that time, symptom free and I was told that everything seems normal. But right after my colonoscopy the symptoms came back. I have A LOT of them and it is really debilitating. I have diarrhea (6-8 times a day at most), when it is not liquid, my feces float, I wipe a lot of mucus and sometimes blood. I have nausea, that get more intense at every new flare and I had to spen 5 hours hunched over the toilet on the 24th (merry Christmas !!). I have huge cramps, bloating, I can barely eat anything, have lost almost 10 pounds in the last 10 days. My stomach is very tender, I have huge headache, my eyes are very sensitive to light, I feel very tired and weak, I am often dizzy and lack balance. I am unable to consume dairy during a flare even tho I am not intolerant when I am without symptoms. My stomach does a lot of noise and I even feel pain during sex (which I do not feel when symptom free). I am desperate for answers, I don’t know what to do, I don’t know if this is all in my head and I am becoming crazy, no one seems to understand or believe me. Can’t it really just be IBS? Am I making this all up in my head?
I am sorry to hear you are not doing well. I have similar symptoms when going through a flare up. It is really hard to suggest anything if the cause of your condition has not been diagnosed though. Loosing 10 pounds in 10 days is quite a lot. Headache, feeling week is probably a direct result of loosing so much weight. Can you go back to the doctor and try to get some help? Something clearly changed after the colonoscopy.


Well-known member
Really there are so many GI conditions and almost all of the symptoms overlap. It is very frustrating and makes for a very long road to diagnosis.

When they did a colonoscopy, did the also do an upper endoscopy? An upper endoscopy would check for things like celiac etc. Even with blood labs that don't point to Celiac you could still have it.

It is good that the colonoscopy looked good but even if the did an upper scope, it only sees a small part of the small bowel. Did they check the entire small bowel with imaging? MRE, pill cam etc. The small bowel will raise cal pro but usually not as dramatically as colonic disease activity, although 90-100 is still on the lower end for your typical Crohn's flare even with small bowel involvement. However, it is not unheard of for some IBD patients to not have disease activity reflect in the cal pro test, this is not the norm but it could happen.

If they have imaged the small bowel and done upper scopes looking for other diseases other things to consider would be possibly motility issues and SIBO (Small Intestine Bacterial Overgrowth) etc and after excluding all else...IBS.

What you are describing could be IBS. Probably caused by SIBO. The prep for the colonoscopy can do a job on the gut flora creating an imbalance in bacteria. After the prep, you could experience an exacerbation of IBS/SIBO.

I would get in touch with your GI and let them know what is happening. It needs to be investigated no matter what it is. There are treatments and strategies for almost all GI conditions and you need relief.