I have answered this question many times and I wanted to make one “definitive” post on the subject. Note that I am not a doctor but I have acquired a decent level of expertise, unfortunately.

Managing UC consists of the following:

Controlling the disease itself Controlling aggravating factors Finding a good GI

Controlling the disease

This consists of:

Finding the right medicine(s) to get to remission Maintaining remission

Finding the right medicine

Generally speaking the progression of UC meds follows this pattern:

Mesalamine (Apriso, Lialda etc). These are pretty mild meds with little to no side effects. These are the first meds your GI will have you try after being diagnosed. If Mesalamine does not work, you step up to: Non-biologic immunosuppressant (Azathioprine or 6mp, Imuran). This is the next step up. Pretty effective drugs with few side effects. The only real side effect is a very slight increase of lymphoma risk. Usually your GI will have you continue mesalamine as well. If this combo does not work, you step up to: Biologic immunosuppressant (Remicade, Humira). These are very effective drugs. Their main problem is that since they are biologics, your develop antibodies for them, rendering them ineffective. Some GIs go from mesalamine directly to biologics because they are so good but the problem with this approach is that if they stop working, there is probably no “going back” to non-biologics. Steroids. Very powerful, but with lots of bad side effects with long term use. Usually steroids are used to control a flare while stepping up to a different class of long term medicine. So if you are having flares while on Mesalamine, you could take steroids to get the flare under control while starting Azathioprine (it takes a few weeks for it build up in your system). Note that it is very important to “taper” or “wean” off steroids – you should not quit them cold turkey. So you might take a particular dose of steroids daily for a few weeks, then slowly reduce it weekly over many weeks till you stop it completely. Be wary of doctors who wean you off steroids too quickly – this might shock your system and get you flaring again as soon as you stop the steroids.

Maintaining Remission

There are a couple of things you want to do long term:

A strong probiotic like VSL#3 DS is strongly recommended. It maintains your gut ecosystem and seems to really help keep things running smoothly.

Avoid gritty (popcorn etc) and gassy (milk etc) stuff while in a flare but otherwise you can probably have anything in moderation. You might be more sensitive to certain foods, it’s pretty much trial and error.

Controlling aggravating factors

Several things can initiate flares and/or aggravate effects of UC:

Low iron/ferritin levels Infections like cdiff

Low iron/ferritin levels

When having flares with bloody stools it is important to get your iron/ferritin levels checked out. Low levels will make you feel exhausted, lacking energy etc. This is probably one of the main things that gets people down during a flare. Get your levels checked and take iron supplements if needed. It will make it easier to get through flares and keep your energy and happiness up when in remission.

Infections like cdiff

Immunosuppressant meds do exactly as their name suggests – suppress your immune system. This makes you susceptible to infections and some of them can make things worse for your UC. The worst one I have seen is cdiff. This is a type of “bad” gut bacteria that is present in everyone in small amounts. A UC flare might weaken your gut and allow cdiff to take hold, which can double up on your flare (cdiff infection causes symptoms similar to UC flare). Or a cdiff infection can trigger a UC flare. So basically UC and cdiff flares can trigger each other and make it more difficult to get the flare under control. The usual way to control this type of double whammy is to take Vancomyacin (a strong antibiotic) and steroids together to control both issues. Depending on the severity or repeat nature of the infection the GI may have you do a long wean of both the Vanc and the steroid.

Finding a good GI

There is no substitute for a talented GI who can help you navigate UC successfully. Unfortunately my experience has shown me that good GIs are hard to find. Way too many GIs are “procedure machines” – all they know or care about are colonoscopies and way too many GIs don’t really understand the science behind UC and its treatment. It seems that you can get through med school by a lot of rote learning without actually understanding the underlying science, which is a problem for people with tricky diseases like UC.

I would recommend finding a research GI near you. These are GIs that work at university hospitals and conduct research in their field. They generally have fewer patients and can afford to actually spend a little time with each patient.

In Closing

Don’t get despondent – UC is a very manageable disease, you just have to spend some time figuring it out. There are new drugs coming out too – including immunosuppressants that target just the colon! So keep your chin up.