So I had initially been dx with Crohns last year in June based on the Prometheus blood test and the pill cam (found ulcers in my terminal ileum along with erythema and lymphoid hyperplasia). I was on entocort, pentasa, and remicade up until November. I start to feel somewhat better with the Remicade until a couple of weeks after the 4th infusion. Then I changed doctors (talking to the old doc's pa wasnt working for me) and the new doc took me off of ALL meds. The new doc didnt think I had Crohns but he did an endoscopy, colonoscopy, and another pill cam. He found erosions/ulcers in my duodenum (biopsies were negative) and new bloodwork does not show inflammation (but my bloodwork never showed inflammation). From what he is telling me the rest of my small bowel is clear. I am skeptical of this new doc. I still have alot of my original symptoms (plus others):
Gastro symptoms
- mucus (alot of it) with stool
- nausea
- diarrhea
- lower abdominal pain
- smelly stool
Extraintestinal symptoms
- joint pain
- burning eyes
- geographic (painful) tongue
- random goosebump feeling
- pain/swelling in the muscles in the back of my head
- acne outbreak on my back
I am kind of lost now. Im thinking of going back to my old doc or going to a 3rd doctor. I dont want to get dx with IBS when I know this isnt IBS. IBS doesnt cause some of the symptoms I listed. Also something else that concerns me is that my small bowel is mostly clear now (except for the duodenum) ... which to me means the Remicade was working and now I am off of it. But I still have symptoms which to me means the disease is still active. Anybody have any advice?
Gastro symptoms
- mucus (alot of it) with stool
- nausea
- diarrhea
- lower abdominal pain
- smelly stool
Extraintestinal symptoms
- joint pain
- burning eyes
- geographic (painful) tongue
- random goosebump feeling
- pain/swelling in the muscles in the back of my head
- acne outbreak on my back
I am kind of lost now. Im thinking of going back to my old doc or going to a 3rd doctor. I dont want to get dx with IBS when I know this isnt IBS. IBS doesnt cause some of the symptoms I listed. Also something else that concerns me is that my small bowel is mostly clear now (except for the duodenum) ... which to me means the Remicade was working and now I am off of it. But I still have symptoms which to me means the disease is still active. Anybody have any advice?