Hello all. I do not know where else I should ask about this and since you all seem like the experts I assumed I would just ask here.
So here is my story.
I am an 18 year old girl from Pennsylvania. Ever since I was in kindergarten I had a constant stomach ache. My mother can recall moments through elementary school where all I did was call home from the nurse about my stomach. I got up in the middle of meals to use the restroom because I had to go RIGHT NOW. When I was 9, I essentially stopped eating entirely because of the pain and I had lost 20 pounds as a 9 year old. I can recall certain times where the pain was worse than normal. When I was thirteen, I nearly got sick after eating out at a restaurant on vacation and it seems my stomach pain has never gone away since. I neglected my pain, thinking it was a viral infection when it worsened, but it ended up being a constant stomach ache with spikes of immense pain. I've been hospitalized for abdominal pain three times since 2015.
My symptoms are: unexplained weight loss, general/often lack of appetite, nausea after eating, abdominal cramps and pains, anemia, and urgent needs to go to the bathroom. Recently, (July) the pain has been consistently worse and I lost 17 pounds from not being able to eat due to the cramping and nausea.
I had never thought I could possibly have Crohn's disease. My grandmother had Crohn's disease. I decided to see a GI doctor this year. I was tested for all sorts of things, h. pylori, celiacs, SIBO. My doctor told me I could possibly have Crohn's disease because my stool samples suggested so. I had an endoscopy and a colonoscopy done, where my doctor found ulcers in my small bowel, which he told me was a prime place for Crohn's, but the biopsies apparently came back negative for Crohn's. I had a Prometheus blood test done which tests primarily for IBDs. My dr had explicitly told me that it may come back negative and blood tests aren't always reliable and proposed other testing options. After my blood test was negative, he just gave me Omeprazole and said "see you in four weeks". It doesn't make sense to me. It doesn't. There's no way I have been in pain since I was five because of an ulcer. That ulcer obviously has not always been there.
It just doesn't make sense.
I was just wondering if I should see another doctor, or if you guys think this does sound like Crohn's? My mother is pretty upset because it seems he has given up after being *so sure* I had Crohn's disease last week. He also told me he would put me on a trial medicine to see if it would help, didn't hear anything about that again.
I don't know, I just don't see how it comes back negative every time. He thinks my symptoms are too prolonged and severe to be IBS so I don't know. I am very lost, hopeless, and confused.
I apologize for the lengthy post.
So here is my story.
I am an 18 year old girl from Pennsylvania. Ever since I was in kindergarten I had a constant stomach ache. My mother can recall moments through elementary school where all I did was call home from the nurse about my stomach. I got up in the middle of meals to use the restroom because I had to go RIGHT NOW. When I was 9, I essentially stopped eating entirely because of the pain and I had lost 20 pounds as a 9 year old. I can recall certain times where the pain was worse than normal. When I was thirteen, I nearly got sick after eating out at a restaurant on vacation and it seems my stomach pain has never gone away since. I neglected my pain, thinking it was a viral infection when it worsened, but it ended up being a constant stomach ache with spikes of immense pain. I've been hospitalized for abdominal pain three times since 2015.
My symptoms are: unexplained weight loss, general/often lack of appetite, nausea after eating, abdominal cramps and pains, anemia, and urgent needs to go to the bathroom. Recently, (July) the pain has been consistently worse and I lost 17 pounds from not being able to eat due to the cramping and nausea.
I had never thought I could possibly have Crohn's disease. My grandmother had Crohn's disease. I decided to see a GI doctor this year. I was tested for all sorts of things, h. pylori, celiacs, SIBO. My doctor told me I could possibly have Crohn's disease because my stool samples suggested so. I had an endoscopy and a colonoscopy done, where my doctor found ulcers in my small bowel, which he told me was a prime place for Crohn's, but the biopsies apparently came back negative for Crohn's. I had a Prometheus blood test done which tests primarily for IBDs. My dr had explicitly told me that it may come back negative and blood tests aren't always reliable and proposed other testing options. After my blood test was negative, he just gave me Omeprazole and said "see you in four weeks". It doesn't make sense to me. It doesn't. There's no way I have been in pain since I was five because of an ulcer. That ulcer obviously has not always been there.
It just doesn't make sense.
I was just wondering if I should see another doctor, or if you guys think this does sound like Crohn's? My mother is pretty upset because it seems he has given up after being *so sure* I had Crohn's disease last week. He also told me he would put me on a trial medicine to see if it would help, didn't hear anything about that again.
I don't know, I just don't see how it comes back negative every time. He thinks my symptoms are too prolonged and severe to be IBS so I don't know. I am very lost, hopeless, and confused.
I apologize for the lengthy post.
