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New here! Undiagnosed and hoping for some guidance.

Hello everyone, as the title says, I'm new to this forum. I've been using this forum for advice for awhile so I figured I might as well join.
My problems started when I was about 14 or 15. I started having chronic diahrrea every day. The doctor told my mom it was probably just something I had eaten (thanks, doc.) and when it wouldn't stop they said it was probably just IBS and told me to take some Imodium. It never worked and eventually I just lived with the constant diarrhea. It wasn't until about 10 years later I was diagnosed with Celiac Disease. I went on a very strict gluten free diet...and I mean super strict. I seemed to be super sensitive to miniscule bits of gluten so I don't eat out anywhere, period. I make everything at home. It's been six years and things have become I increasingly worse. I've had multiple endoscopies and several colonoscopies to test for Celiac (every GI I've seen insists I must be eating gluten) but everything always cones back negative. My last GI literally said he didn't know what was wrong and that was it. Again I just kept living with it, thinking this was just my norm. Finally this past February I started having trouble going to the bathroom. Whenever I had a bowel movement it hurt so bad I could hardly walk. I ended up having a perianal abscess which they drained. It continued to hurt and the general surgeon insisted there was nothing wrong. Thankfully at this point I had found a really great GI who sent me to see a friend of his who is a colorectal surgeon and he determined I had a fistula. Two weeks ago I had a seton put in and it started to feel good but then I started having debilitating pain again. I can hardly get out of bed some mornings because it hurts so bad. I saw the surgeon for my follow up and he said it was probably an infection because he noticed more puss than he'd like to see. I think he knows how stressed out I am because he wouldn't really say much about the infection when I'd ask, I think he was trying to keep me from freaking out haha! Turns out it's pretty bad because he put me on Augmentin 875mg TWICE a day. I see him again next Monday to make sure the antibiotics are working.
When my GI did my last colonoscopy, he said my small bowel was full of lymphocytes so he was leaning towards lymphocytic colitis. I started taking Entocort and after a month of no results he took me off of it and said if it was lymphocytic colitis the Entocort should have helped. We had talked about Crohn's before but at first he didnt seem to think that was it. I think he's re-thinking Crohn's now because he says I have a lot of the symptoms but I guess none of my test results are showing it. The way he put it was that it can sometimes take a while for Crohn's to "present" itself and as of right now it hasn't. He also said it can be hard to diagnose.
Through all this I've had to quit my job and go on temporary disability...I haven't been able to drive since February because I can't sit. I've lost weight and my hair started thinning out really bad. I finally got sick of it and had my husband shave it off.
I know that others have been through so much worse...my mom had Wegener's Granulomatosis and growing up I watched her fight hard. She ended up passing away from breast cancer when I was 17. I know what I'm going through isn't much compared to what she went through but I'm having such a hard time with this. I'm so frustrated with not knowing what's causing all this and I feel like right now there's no end in sight. I guess I'm just wondering if anyone else has gone through anything similar while being undiagnosed? If Crohn's hasn't presented itself, does that mean I just wait for it to get worse before they finally decide to diagnose and treat me? Thank you for any insight and sorry this is like a small book!
 
Please don’t take this the wrong way, but it’s such a relief to finally come across someone going through a similar situation as myself. My perianal abscess started in February and I’ve two back to back with back to back surgeries since May, with no answers. I’ve been out of work since May 16th. I’m very curious as to how you attainted temporary disability. I’ve been told I’m not eligible for such
 
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