Hello! I'm a 20 yr old who has been experiencing symptoms for roughly 2 years now, but it has been difficult keeping track of time, I will admit. I will do my best to describe everything, I just would greatly appreciate any help or advice given to me... I am quite frankly at my wits end and am in great need of any help to be honest. This may be long, so I apologize in advance!
So I will begin by saying that I just got recently diagnosed with ankylosing spondylitis this month. I am taking indomethacin (50 mg capsules, twice a day) which has provided much relief as far as at least helping me finally get some sleep as my back pain, leg pain, and shoulder pains were agonizing especially at night. I mention this because I know that AS can go along with inflammatory bowel diseases, so I thought it may be important.
Moving on..! My symptoms I have been experiencing over the last two years are, to summarize,
-Unintended weight loss (approx 70 lbs since November of last year I believe)
-Loss of appetite
-Certain foods really cause my stomach pain, so my diet has been rather limited unfortunately. I find it safe to stay away from anything fried, high in fat, or greasy. But strange things will cause me pain in my lower mid-to right abdomen so it's a trial and error type of thing. I've been living off oatmeal, yogurt, and bread for a while.
-Terrible joint pain, aches, stiffness-- but I attribute this to my AS
-My bowel movements are never... normal, if that's the correct way of wording it... I'm usually very constipated, but when I can go, it's diarrhea, and it's very goo-like, dark, floaty, and has a ton of mucus. I have seen blood in the past, but not recently luckily. There is always mucus however.
-The feeling of "the need to go" but being unable to do so. It feels so urgent to, but nothing comes out.
-My RBC count has been steadily going down, but it isn't low thankfully. My platelets are low though and so is my WBC. Probably not related to any of this though.
I've had many CTs of my stomach done, ultrasounds, barium xray of the small bowel (god that stuff was nasty), small bowel follow through, tons of blood work, stool sample studies (they weren't able to get a good one from me though...), a pill cam, 2 endoscopies and 1 colonoscopy. I had one endoscopy done in July 2015 along with the colonoscopy done at the same time. I had another endoscopy done in April I think of this year. The colonoscopy report from then said "small intestine has mixed inflammatory infiltrate of lamina propria" and "large instestinal type mucosa having mixed inflammatory infiltrate of lamina propria". I don't know what it means and if it means anything..? Does anyone know?
The GI who had done the two scopes at the time was... to be frank, really not very good. He didn't want to take the time to speak with me about
the report, nor did he want to take the time to speak with me about
any of the issues I was experiencing. So I had no choice but to switch to the one I am currently seeing. But, unfortunately, I am going to be having to seek a new one since this one doesn't want to repeat a colonoscopy (even though he wasn't the one who did the last one??) since he does not think anything much could have changed since the last one-- mind him that last one was a year ago-- and I am flabbergasted. I feel horrible, and I continue to lose weight despite my best efforts of trying to eat what I can and offers no treatment options. I'm going to see if I can find a new GI, it's just difficult since it takes so long to get in with a new one as a new patient... and there really aren't too many good ones I can find in my area.
Thank you for taking the time to read all of this! I appreciate any advice given. I would just love to hear if anyone hear thinks I am right in thinking this is UC (or Crohn's?)... I should also add that I have been tested negative for Celiac multiple times and tried going gluten free for 2 weeks, so I don't think that is the problem... Thank you so much!!