Newly Diagnosed Colitis

Welcome to HealingWell, but I'm sorry to hear you have UC.

You'll want to ask your specialist how bad the UC is (mild, moderate, severe?) and what parts of your colon are infected. You may have proctitis (rectum only), proctosigmoiditis (rectum and the S-shaped curve just above it), left-sided or pancolitis (full colon.)

Typically biopsies are taken during the colonoscopy, and you want to know the results of these. What you don't want to hear is dysplasia, as that can point toward possible colon cancer. We are at a somewhat increased risk for that.

Ask if the doctor is reasonable sure you have Ulcerative Colitis and not Crohn's disease. The symptoms can be similar, but sometimes the treatments can be different. Asacol is a long-term maintenance medicine. Predisone is used short-term to induce remission, or lessening of symptoms.

The short-term side effects of Pred do tend to get worse the longer you take it. As you taper, the joint pain may get worse. The facial swelling and weight gain are primarily from fluid retention, and will slowly go away when you're off the Pred. For future reference, these can be minimized somewhat by watching your salt intake. Pred typically makes you crave salt or salty foods. The insomnia and acne will also clear after you're off the Pred. In the meantime, there's not much you can do about ithe acne as it doesn't usually respond to regular acne treatments. Your sleep should get better as you get off the Pred.

Also ask your specialist about rectal medications. The oral Asacol may not reach all the way to the rectum, and in UC that is the area that flares first and heals last. The drug in Asacol is also available in enema form or as a suppository. It's usually better to start with enemas if you have any involvement above the rectum itself. Enemas may also help with new flares and eliminate the need for steroids. If you do need steroids, they are also available in enema and suppository form, which often have fewer side effects.

I'm sure you'll get a lot of helpful information here, and welcome again to our forum.

The leg cramping is common with Pred. Most of the time it's related to a sodium/potassium imbalance in your body. As you crave salt and eat more, it depletes the potassium in your body. This can cause muscle irritability and (sometimes severe) cramping. Often you can avoid this by drinking a glass of orange juice or eating a banana morning and evening.

Probiotics are preparations of some of the "good" bacteria that normally live in your colon and help with colon health. The yogurts have small amounts added, but we generally take much higher doses. You can find a variety at your health food store. Also, pharmacies generall carry them. I order mine over the internet. Some people need to try a few preparations before finding one that helps them.

Probiotics also help protect us from overgrowth of "bad" bacteria in the colon which can make us very sick.

The enemas we use are usually either Rowasa (mesalamine) - the same medication that's in Asacol, or hydrocortisone enemas. You'd probably want to start with the mesalamine, because it's good to avoid steroids whenever possible. If that doesn't help you could try the steroid. The idea is to treat both from the top and the bottom, because oral drugs often don't reach the lower end of the colon, where flares start. These are prescription drugs, which your doc would need to prescribe.

Coffee, things with lots of caffeine, that stuff with bother you. Pop might be okay, but it bothers some people.

Also if you're interested in seeing how goat's milk works for you, I found a good brand... I don't remember the name... but the carton is like tan, with blue pictures on it (I think like flowers and some Swedish girls), but yeah, it's good and doesn't taste bad like other brands,a nd my mom had me drinking that when she heard cow's milk could hurt.

The diet thing really depends on the person. Most UCers seem to have an IBS thing going on, I don't think I'm one of them (but coffee will speed up the poo). If you end up going to a naturopath you might as well ask about some supplements.

My first dr. suggested tring to use meds only when flaring, then taper off and see how you do. So i would not need any thing sometimes for a couple of years. Then i would be on Pred/sulfazine. and boom i would be ok again. His idea was that uc patients can become immune to the meds so do not use all your options until you need them. I have been a uc patient for the better of 20 years. Only now i am going to have to stay on meds for longer this time. good luck to you and i must say this blog can help you a lot when you are scared of the new things that pop up. ask your Dr. what they think.