do I really have UC?

I'm a female sophmore in high school and back in december I had my first flare, toilet 5+ times a day, blood, diarrhea, urgency, the usual. january I had my colonoscopy and as soon as I woke up I was told I had acute ulcerative colitis and then the doctor left. I booked an appointment with the GI I was referred to but by then my symptoms were all ready going away. He said he wasn't gonna treat me since I was already getting better on my own, and that possiblyI didn't have UC but some sort of viral thing that was long gone before they tested me and the inflammation took longer to heal. I was happy to be back to normal and assumed I was free of any disease, but first week of june the symptoms came back. The symptoms were pretty much the same except I wasn't going as often maybe 3 times a day and my stool was more soft than like diarrhea. I go to my family doctor (because my GI was on vacation), and he gave me cortifoam, it did nothing, and five days later he prescribed me 30mg of prednisone a day which started working the first dose, same symptoms but only having one bowel movement a day. Now the doctors are assuming I do in fact have UC.

As you can imagine for a person my age it really is a heavy feeling when you're told you have this crappy disease (literally), and there's no cure but it's fine we can treat it.....but you have to rely on meds for the rest of your life. The first flare up I had pretty much put my school year down the drains. I was missing school, my grades slowly dropping, I developed a real problem with stress and would get these horrible anxiety attacks, for once in my life I was told my health was my first priority, no longer my grades. I'm probably still in denial about this whole thing, I mean my summer just started and here I am at home all day feeling bad for myself, doing everything I can to try and forget about it, trying to fake the fact that everything sucks at the moment. Again, it's probably just me denying it, but part of me is determined that I don't have UC and things will go back to normal like they always have.

Finally back to my question, is it really possible to be misdiagnosed with UC? What else could it possibly be? For starters I know for a fact that my UC is very mild, my GI decided to start weening me off of prednisone so now I'm down to 25mg a day and 4 pills of mezavant as part of my long term treatment. But what really bothers me is that when I had my colonoscopy in january the pictures came back and when I showed them to my family doctor he looked at me weird and said that my colon looked pretty normal, my colon was healthy looking, pink not red, and NO SIGN AT ALL of ulcers or of inflammation, however it looked like a very mild rash, more like irritation, like someone took a red pen and drew little dots on my colon. My doc said even that could possibly been caused from the camera itself going through my colon. And yes I was right in the middle. of my flare at this time.

I'm just ranting at this point but really I'm looking for other opinions and maybe some sign of hope from someone. Do you think that if my UC is in fact this mild that I could mantain well enough without medicine?

Technically you were not diagnosed with idepoathic UC, because that is a chronic condition, and there are accumulated changes in the shape of cells lining the colon. This is seen in biopsy reports.

Your scope report was "acute" - not chronic. So while there was inflammation and ulcerations, the doc said "acute"

This could go away, especially if it followed on some viral infection. If it was a food related allergic reaction, it could return with ongoing exposure to the food, and even get worse. The telling thing here is that your symptoms have returned or persisted.

Since chronic UC seems to involve genetic susceptibility, a trigger, and some dysbiosis of the gut microbes. It is possible that a series of acute incidents could disrupt the gut microbes to the point where they cannot recover. In my thinking, this kind of chronic UC would respond to probiotics more than other origins/kinds. (This is just my speculation.)

The mezavant is a form of 5-asa, generally one of the best tolerated meds, which works mostly topically in the colon. It is generally not a problem taking this med long term any more than taking blood pressure pills or insulin or other chronic medications.

The discrepancy between the GI's and you PC's reading of the scope is odd. If biopsies were taken, you should get copies of the pathology report. That is really the decider, since there can be microscopic colitis not as readily seen.

Once in remission, some people do maintain fairly well with probiotics, and some nutritional strategy (i.e., anti-inflammatory diet or supplement). Maybe you could. But, many folks who report stopping maintenance medication say that when they flared again it was worse and the meds did not work as well.

Ultimately it is your decision, since you will get advice to stay or stop. You might take them for a while. If you establish a good remission, you could investigate things that others report keep mild cases in check. If symptoms begin to come back, I would not wait too long to jump back on meds.

Good luck

Post Edited (DBwithUC) : 7/9/2014 11:21:51 AM (GMT-6)

Unfortunately the answer is probably one of the above, but which one, only time will tell. Personally, I don't like the word "mild" as it implies that it will never get worse. In your case it could just go away forever, come back as it did recently, or it could get worse. You and the docs need to stay on top of the situation. More evidence is needed to be able to advise you better. Stay alert for things that may make you worse, such as diet. Stress can also be a huge factor. I like the probiotic idea. Just about all UC'rs need mega dose probiotics (50 billion CFU's or more) and it wouldn't hurt you to do that, even if you don't have UC.