Looking for a diagnosis
I've just joined although feel like an imposter as I haven't been diagnosed with anything but IBS so far.
I've had the classic IBS symptoms since I was 16 (now in my 40s). As the years have gone by things have progressed. About 6 years ago I started noticing blood when I opened my bowels. I had a calprotectin test done and was only slightly high (75). I had a colonoscopy done by a nurse specialist and it was horrifically painful. I had adhesions on my caecum and left large bowel which was put down to Endometriosis. She couldn't get the camera past the ileocecal valve which I believe is fairly normal.
Everything came back normal and I was told I had severe IBS.
About 2 years ago things began to get very severe. Urgency to go to the bathroom and blood on occasion. Often times a lot of mucus. Sometimes the pain is so bad that I pass out on the toilet. I also stopped absorbing B12 so now need injections. I'm at the point that I'm terrified to go out. Most of my pain is around my naval and at its worst feels like I've been lit on fire.
I went back to my GP and she did a FIT test which came back positive for blood. I'm now with a really good Gastroenterologist. They just repeated the calprotectin test and it's still not typical IBD high. It came back as 150 which is described as 'very mild inflammation'. I'm now waiting to have a colonoscopy and the consultant is going to do it.
Just feeling a bit in limbo.
If you still have blood when you use the restroom, I would be inclined to think that you have IBD. IBS doesn't cause blood in stool. Of course, I am not a doctor but definitely push to be tested for IBD. You also may have ulcerations in your rectum which is something I personally have. So I get fresh blood in the toilet often. Have they taken biopsies during your colonoscopy? That is important. Also, it is possible to have IBD in the small intestine. Colonoscopies only show the large intestine. You may want to ask for a Pill Cam Test. This test will take images of your entire digestive system from mouth to anus. -Elizabeth (team member)
When is your colonoscopy? I hope it provides the "view" necessary to pinpointing exactly what is going on in your body. I agree with Moderator Elizabeth that the bloody stool indicates something more than IBS. She also offers an excellent suggestion with a pill cam. I do hope your insurance covers that if it's available in your hometown/region. Since I live in a rural area, I usually have to travel to Ohio State or to the Cleveland Clinic (3 and 4.5 hours away respectively) to receive good medical treatment. Please let us know how it goes for you and the colonoscopy. This community is a great place to find suggestions/ideas for dealing with IBD if that ends up being your diagnosis. Living in limbo is a challenging place to be, but hopefully, you'll soon find out more information. Until then, just be kind and good to yourself. Sending positive thoughts to you! --Traci, UC-IBD Team Member
