Not Functioning- venting with ?s

How old are you? How long have you had UC? From what you have written it sounds to me like all of your doctors are a little inept.

I can't believe the doc called in Entocort solely based on you telling them you were in pain. Have you taken it before? If so, did your urine turn red before?

Your Gyn shouldn't have put you on antibiotics "just in case", especially having UC. Antibiotics can often wreck havoc on your GI system and make your UC much worse so you should never really go on them ever, "just in case". You should only take them if they are really, really needed. This is something you are going to have to remember for the rest of your life and know when to say no.

The ER docs saying kidney stones was also rather inept as that was highly unlikely with a younger person.

When was the last time you had a scope? Is it possible that the juices and protein shakes are making you worse? Often times these can be bad for UC. You can't assume anything with diet unless you have a past history of how particular foods and drinks effect you.

Interesting case. A little out of the norm. It seems like a Urologist would be able to figure out why you have blood in your urine unless you have a low platelet count, which should have been noticed in your blood work if that were the case. Obviously something non-GI is wrong if you have blood in your urine so I doubt that a GI is going to be able to fix that problem and that problem could be related to your pain. I'm curious, during your long time of remission, did they do anything to put you into remission and were you doing anything out of the ordinary to stay in remission during all that time? It sounds more like you just went into a spontaneous remission for which you didn't need any treatments of any kind. Were you taking any meds of any kind for anything before these last two years?

Pain is a tough one, even harder for me to understand because I have never once in my four years of UC had any pain. I have asked here a few times if anyone actually knew exactly what it was that was the cause of their pains and no one ever seems to be able to answer the question, they just know they have pain and where it is but don't know why or what is the exact cause of it. I'm at a loss as to any advice I could give you about asking the doc questions and am actually dumbfounded as to why the Urologist isn't trying to figure out why you have blood in your urine.

OK I feel like rewording my whole post because I just looked up the side effects of Entocort and number one on the list was "easy bruising". Bruising means bleeding because that's where a bruise comes from, bleeding. If I remember what you said, this bleeding has happened and gotten worse since starting the Entocort. It may very well be causing you to have a low platelet count because that is one thing that could account for blood in the urine. I would have your blood checked again for platelet count. I don't think you can take Entocort and Pred at the same time so the removal of Entocort may cause the blood in your urine to stop. It won't do anything for your pain though as you had that before even starting the Entocort. Good luck with it all.

The GI doc you had at age 22, while he had a right to question the Ped's diagnosis, was kind of wrong to suggest that your UC was "gone" and you shouldn't expect to see it again. That's kind of a misguided suggestion. He could have said that you never had UC in the first place and therefore you will never see it again, which I guess is what he meant. In any event, the Ped did seem to be right all along. If it were me, I would go back on the Azulfidine, drop the Entocort, do a month or two of pred, and then continue with the Alzulfidine forever as a maintenance med. This time, don't ever stop it, ever, as it is what keeps you in remission and if you were to quit then your UC would surely return at some point in the future and it often gets harder and harder to treat the more flares you get, requiring you to continually go up the med ladder. It's better to take Alzulfidine forever than to quit, get worse, and then have to take more dangerous meds with more dagerous side effects. I find it interesting that you were doing fine while in Japan and then after returning from there you started flaring within a year. It could be due to diet change or possibly stress or both.