Newly Diagnosed and Freaking Out!

Hi everyone,

I was diagnosed with mild-moderate ulcerative proctitis. I've had cramping, gas a little bit of diarrhea and lots of blood with every bowel movement for the last month. My doc prescribed Uceris but my insurance won't cover it (unless I've already tried 6 other meds first) so I'm waiting to hear what the next step will be. I'm absolutely terrified of all the awful side effects of the steroid meds. I've been trying to read about diet and more natural cures but I'm totally confused. Everything I read says you should eat this, don't eat that, eat this, etc, and all I can gather is I shouldn't eat anything ever! I can't even find a functional medicine person in the area who doesn't have a ridiculous website or a million horrible Yelp reviews. I'm so frustrated and this is only the beginning.

Any advice???

I have found both green tea and pomegranate extracts helpful in reducing symptoms for my UC, but they both have well documented anti-inflammatory properties.

I'd stick with what a real gastroenterologist wants you to do for treatment. "Functional Medicine" (I had to google it) sounds like a bunch of pseudo scientific new age malarkey designed to treat excessively large checking account balances.

https://en.wikipedia.org/wiki/Functional_medicine

By the way, it's helpful to others if you set up a signature in your profile that tells us a little about your situation and current treatments.

Diets and alternatives did absolutely nothing for me. I'd ask your doctor for a prescription for canasa suppository or rowasa enema, both are anti-inflammatory mesalamine-based medications.

Maybe the doc planned for something to follow the Uceris - it (or other steroid) is never intended to be the only med. Usually you start with a mesalamine, and for UP it can be helpful to get it as an enema.

You should eat low residue until the flare is managed, but this is just to have less poop. You may or may not have foods the you can't eat or that help. People get mixed results.

good luck

It's no big deal, easy peasy. Not every doctor mentions enemas right away due to the initial ick factor and poor compliance. Most importantly they're effective and go straight to our biggest problem area, the rectum that causes frequent, urgent bms. Pills are good at treating higher up but aren't good at treating the rectum. So, you're best with both pills and rectal route medications.

As I have found out from reading many posts, our forum moderator ipoop has great advice.
Also check out Advice from veteran Uc'ers to the newly diagnosed -- has a lot of good info, even for those who aren't newly diagnosed!
www.healingwell.com/community/default.aspx?f=38&m=1629394

We all freakout when we're first diagnosed. As most of us had zero health issues's and are young when 1st diagnosed. It's an incredible lot to learn and get used to frequent appointments with doctors, multiple medications for life, and worries about the future.

Take a huge deep breath, as it's going to be alright. I and many others have been at this uc gig for quite a while and you learn how to cope and know your illness better and what to expect from it, which eases the mind considerably. We live nearly normal lives and ulcerative colitis can be minimal impact on our lives once we achieve remission (an absence of uc symptoms) and we can mostly forget for years at a time. Everyone does eventually flare though, it's inevitable. Best you can do is be vigilant and stick to your maintenance treatment whether you're feeling good or bad to ensure the longest periods of remission and the shortest periods of flares.

Right now, expect a lot of trial and error while your doctor tries to find the right combination of medicine to control your flare. It's a lot of "try this and then see me in 6 weeks", and it's quite rare to get the medication and doses perfect on the 1st or even 2nd try... Ulcerative colitis is extremely individual in what works for one doesn't necessarily work for another. It's going to take time, patience, and persistence on your part on what treatment you need to advocate for your best possible quality of life. Learn everything you can about uc and it's treatments as to best work with your doctor as a partner in your treatment plan (no doc dictators allowed lol).

No, you won't need to do them nightly forever! However, your boyfriend will also get over the two countries factor again. My husband always asks if it is a butt drug night now, kind of jokingly. He was just as grossed out by the concept as the rest of us were, but they work and you will feel better using them. Hang in there.

Well the enemas are really a practice thing. I started taking them when I was only 17 and within a short time I became a pro in using them. It will only take seconds. Don't go too fast at first of course. You can insert it after you're done with whatever you and your boyfriend were doing ;)

Uceris saved me when 60 mg pred didn't cut it. I was put on azathioprine at the same time and that was over 3 years ago. Have been in remission since.

This forum is a great support so keep coming here and share with us.