Looking for some insight again

I've been back and forth on whether or not I have Crohn's. I had a colonoscopy done back in February that showed an inflammed colon(patchy, at the beginning, middle, and end). The GI suggested it might be Crohn's disease, but the blood work came back negative. Of course, he said that test only helps if it comes back positive, because a lot of times if it's negative it can be wrong. 

My symptoms began over 2 years ago. They started with slight bleeding, but eventually that bleeding became a lot worse and happened a lot more often, which progressed to always being constipated(I'm talking 3-5 days without a BM if I don't take Miralax or something) which led to anal fissures, and then the severe cramps followed by diarrhea, and the last issue that cropped up in the past 6 months was weight loss. I normally weigh about 170 lbs, but I got down into the 130s.

So, about 2 months ago, I was complaining about excrutiating pain during and following BMs, so I was sent to a rectal surgeon. He immediately noticed a chronic anal fissure that the GI missed during his inspections and colonoscopy. He recommended surgery, which I decided to do. During the surgery, he found a second chronic anal fissure that he missed during the inspection. Anyways, the surgery went amazingly well and even though I'm still healing, that unbelievable pain is now gone after I use the bathroom. Sometimes I wonder if the hunger issues I had were more of a subconscious thing that made me stop eating because I started to associate eating food with that much pain. about a month after the surgery, I've been able to eat more, almost like normal again.

I was put on Apriso after the colonoscopy, but I didn't notice much difference so I got a little lazy taking it. about 2 weeks after I stopped taking, I was at a point where I couldn't eat at all without getting severe stomach cramps, so I basically just stopped eating. Eventually my hunger went away, but at first I was starving but too afraid to eat. Once I started taking the Apriso again, the stomach cramps went away for the most part. I have stopped taking it the past 4 days just to see what happens, and I was fine the first 3 days but off and on today I've had some pretty painful cramps starting popping up, but they don't stay for very long. However they do seem to be slowly getting worse so I am going to start back on the Apriso in the morning.

I guess my question is what all can cause somebody to have an inflammed colon? Can anything besides UC/CD type diseases cause it?

The rectal surgeon said it didn't look like Crohn's to him(which believe me, I hope it isn't, but I'm being careful about getting my hopes up), so my other question is if Crohn's is in it's early stages, would it be that easy to just look at and say that it wasn't CD? I'm not sure what exactly the differences are in early and later stages of CD.

Thanks for any help!!

edit: I forgot to mention the fistula that my GI told me I had. I could feel the spot where it was when he was looking at it, and he gave me some antibiotics for it, which I believe healed it up because the surgeon said he didn't see a fistula.

So, Josh, if you feel better when you're taking the medicine, please don't stop taking the medicine.

Sometimes it is just really, really hard to get a definitive diagnosis of Crohn's or UC. I've never had one. But I choose to behave as if I have a firm diagnosis because it guides my discussions with my GI about what treatments might be best for my symptoms. When I just acted like I had UC, I wasn't getting effective treatments. So there you go. My inflammation has appeared on scopes in my rectum, cecum, stomach and esophagus. The most effective meds for me have been Pentasa (which is active throughout the entire bowel) and sulfasalazine (active only in the colon).

I know it is hard to adjust your thinking to the idea that you have a lifelong chronic illness. It totally sucks. But what sucks even worse is not treating it and then getting really, really sick. Not eating? Not a good idea nutritionally. There are problems you cause with this approach (like bone loss, etc.) that cannot be reversed. Uncontrolled inflammation? Raises your risk of developing cancer, can cause joint problems...so please, take your meds.

I agree with the others. Stop going off and on the meds. Stick with them. They seem to be helping you, so don't stop taking them. With a fistula, I would think you have Crohn's. I don't know if you can get those without having Crohn's, but I know a lot of Crohnies get them.

Thanks for the info everybody.

As of now my plan is to stay on the Apriso since it seems to help a lot, and just see how things go over the next 6 months to a year. At that point I plan on having another colonoscopy to see if anything has changed on the inside.