Just diagnosed with Ulcerative Colitis, could use some info? :(

Hey, I'll introduce myself.

My name is Jamie, I'm 17 years old from Dublin, Ireland and on September 6th 2011 I was officially diagonosed with Pancolitis.
I had my first flare up back in November '10, but was too embarressed to let anyone know until May of this year, the diease just got worse because I refused to get a colonoscopy (dumb move, I know, but telling a 16 year old boy that they had to have a camera placed up their rear end is not gonna go down well, right?)

I pretty much sucked it up and got the colonoscopy done under general anesthetic, where they found out the extent of how badly i'd damaged myself by not getting this seen to sooner, I ended up in hospital for 9 days needing blood transfusions, potassium drips, hydro cortisone injections and multivitamin drips aswell as being started on meds for my Ulcerative Colitis (I'm currently on a course of steroids, 8 a day for 7 days and Pentasa 1g granules 3 times daily)

I'm pretty much lost, none of my family have this disease, and anyone that I know who has it doesn't have Pancolitis, and there's not much information about pancolitis out there.

I feel like I need support, but I don't know where to look :( so if any of you could help me out, that would be great.

Hi Jamie. I too, was diagnosed with pancolits. Just know that you CAN get into remission and stay that way a long time, even with this diagnosis. I've been in remission for close to 2.5 years now, with basically no issues. I am dealing with an anal fistula that developed from a perianal abscess, but the colorectal surgeon I am seeing due to it is confident it has nothing to do with my UC. Plenty of non-UCers get these, and I seem to have a fairly strong history of them.

I do feel there is a great deal of luck in how well I am doing, but I am also quite confident that it also has to do with the fact that I am VERY good about taking my meds, and have only missed a coupleof doses, at most. I also use a mesalamine enema twice a week.

In many ways, having pancolitis isn't all that different from having any other type of UC, except perhaps proctitis, as it can be managed with oral meds only. In fact, I know of members on this forum who were diagnosed with pancolitis, only to have future flares limited to the left side.

Anyway, that said, ask anything you need!

Honestly, nobody can say whether or not you'll need more meds. It all depends on how severe your disease is.

That said, I DO think it would be wise for you to use a mesalamine enema--it has the same active ingredient (mesalamine) as the Pentasa, just a different "delivery method," so to speak. I know that as a teenager, you're probably horrified at the thought of using an enema. But trust me, these things WORK! When I was diagnosed, I started on Asacol (it's an oral mesalamine drug) alone. After a week, I was only a tiny bit better, so I started the enemas. They made a HUGE difference right away. Studies show that patients who use them in conjuction with oral meds gain remission more quickly. Further studies have shown that people who use them twice weekly in conjuction with oral meds stay in remission for longer than those who only use oral meds. Are enemas fun? No. Are the painful? No. Are they worth it? YES!!!

I also take a probiotic supplement to help control my UC. I don't really know how much good it does, but I know for a fact it isn't hurting anything.