UC - Normal Symptoms?

I think he should increase the dose of Asacol and use Rowasa enemas in conjunction with the steroid enemas. I agree with the dr about avoiding pred but he's not taking enough meds. A lot of us take 4 Asacol 3x a day. I take 4 2x now. Call your GI and ask him why the dose is so low.

It sound to me like he has been in one long flare with bad days and good ones. I've never heard of a flare lasting a week or a few days. I had a flare that lasted a year+!! Many of us have. Not trying to scare you but it would be strange to flare so many times so close together in my opinion.

Blood is very common, gas, urgency, loose stool, cramps, fever, fatigue all go with the territory.

No one can tell you if it will get worse. If he has pancolitis, that's the worst case, the only thing that would be worse would be if it were extremely difficult to treat. It doesn't sound like it has been difficult to treat in the past. There are a lot of medical options open to you. Please try not to stress. Support from your family makes dealing with UC a lot easier.

Do you have any relatives with UC? I don't but many UCers do.

Is he seeing a GI specialist or a regular Dr? Definitely go to a GI. Has he had a scope? Has he had stool tests?

Hi and welcome!

My son was diagnosed when he was 13, so..... I've been there. He was put on 9 Asacol a day, and now in remission has cut back to 8.

My son's GI also recommends probiotics and fiber (Benefiber or Metamucil.)

She also treated a flare last spring with Flagyl.

As the others have indicated.... I don't really even consider it a flare unless it's gone on for at l;east a week. Usually my flares last a month or more - but if I start treating it quickly, I'm functioning for most of that, it's not acute "fever/bed" illness that whole time.

Do you have a 504 Plan in place at school? My son's GI was adamant that we do that, and it's been a lifesaver! Wow, my son has sure missed school, and.... my guess is that because of the UC, he freaks whenever he feels bad and therefore missed even more school. The 504 Plan keeps the school from penalizing him and gives him extra time to do makeup work, go to the restroom whenever (even during exams....)

I'm glad you found us!

Thank you everyone!! I feel better already just to know that 'we are not alone' and that are people out there to ask questions to. My son, Niko, had a scope done on Oct 7, 2010. That is when they diagnosed him. He probably had it for awhile and it was probably misdiagnosed in the past. By the time he had the scope done, he was 13 years old and only 88 lbs. Now, on meds, he has gained weight and is about 100 lbs. He was okay from Oct - mid Dec. But now...

What everyone says about him being in a 'long flare up' from mid Dec until now makes sense. He does have good days and bad days... he has loose stool right now (~3 X day). No blood. Some days he has fever, other days he is okay.

I will ask my doctor about increasing his meds. I will also consider the use of fiber. And thank you about the tip regarding a '504 plan'... I will look into it.

I have a couple more questions. Thanks in advance.

1) Niko's acne is terrible. I don't know if it's just puberty... or if it is the meds? I just know it got a lot worse when he started taking the meds. I don't know if it was just a coincidence. Anyone else experience this?

2) Does anyone worry that the meds will have long term affects (on his kidneys or other?)

3) Niko's doctor says that he has no food restrictions. Does anyone have any advice on foods that Niko should stay away from that may trigger a flare up? or foods that will help prevent one?

Thank again!!

My son's GI outlaws only one food: popcorn. (Too scratchy.) With kids especially, and their already often odd eating patterns, I think doctors are afraid to put on more limitations - the kids are still growing and developing. I know folks on here have found good help in the Specific Carbohydrate Diet and in just going gluten free and dairy free, but... I have been afraid to limit my kid's food at this age.
But he should be encouraged to notice effects from what he eats - he'll most likely notice a day later.

The ccfa. org site has a template for a 504 Plan. My kid's GI demanded we do it and it's been a lifesaver. It documents that he will likely be tardy a lot, absent some, should have a permanent lav pass, and may be allowed to go to the restroom at any time even during standardized tests....one meeting put it into place for his whole high school career, and we've updated some with further notes from the GI. In the US, the 504 is a document guaranteeing rights under the Persons With Disabilities Act.

Your other questions..... acne; my son had it when on pred, but actually..... my non-UC son had HORRIBLE acne about that age - just puberty.
I supposed kidney damage should be a concern, but the 5-ASA meds are the safest available for UC and to a large extent work topically, so..... to my thinking, it's the least risky med.

Some of us have food sensitivities that will trigger symptoms or discomfort..... a food journal is the best way to tell. We're all different in how we react, which is frustrating.

Hang in there!