As a long time Crohn’s patient, I am often sought out for advice on handling the disease by newly diagnosed patients and their families. And while awareness of Crohn’s is much greater than it was twenty years ago, most people really don’t understand much about the disease or the way it impacts a patient’s life. So I’ve decided to write a four-part document that hopefully explains to new Crohn’s patients and the general public what to expect and how to cope. These posts cover the medical symptoms tips for patients living with the disease and tips for people who know someone living with Crohn’s.
In this post, I’ll cover some of the treatment options available and the improvements made since I was first diagnosed. But before deciding on a treatment or treatments, discuss all of these options with your doctor. You may want to read to read the section on symptoms before reading this post, so that you understand why certain treatments are used.
When I was first diagnosed in April 1991, there weren’t any truly effective treatments for Crohn’s Disease. The treatments were either drastic – an ostomy – or did their best to mask the symptoms . Medications included a form of sulfa, antibiotics, oral steroids and anti-diarrhea solutions. Since these medications rarely induced remission of the disease (that is, a significant reduction of symptoms), most of us with Crohn’s were hospitalized often. Between 1991 and 2000, I was hospitalized 18 times for Crohn’s or Crohn’s related symptoms. All told, I spent 318 days in a hospital bed during those ten years.
The principle reason treatments were so ineffective was that so little was understood about the disease or how it functions. Fortunately, great strides have been made over the past ten years. Thanks to the work of researchers, current treatments are much more effective. I’ll go through each of these.
Corticosteroids are artificial hormones often given to patients in during “flare-ups” (periods of extreme disease activity). During a flare, what happens is the tissue surrounding the disease inflames, causing the extreme pains for which Crohn’s is noted (I’ve joked that I know what labor pains must feel like – my wife actually agrees!). Corticosteroids such as Prednisone, Prednisolone and Deltasone work by reducing the inflammation. These drugs are artificial replacements for the corticosteroids generated by the human body, but are given in much higher doses than the body normally makes. I’ve received as much as 120mg of prednisone a day, or about 60x the body’s normal production. While they are as close to a miracle drug as any for ending flare-ups, they pose serious risks with extended or frequent use. The first is dependence; when receiving such massive doses the body stops producing its own. This is why they are usually prescribed for short periods and ramped down while prescribed. Prolonged use can also lead to cardiovascular disease, osteoarthritis and cataracts. Also, patients taking corticosteroids should note that weight gain and mood changes are common when taking them.
This type of medicine is used to help maintain remission. It’s been used since I was first diagnosed, but the delivery of the active ingredients in sulfonamides has improved greatly in that time – meaning lower and less frequent doses are needed for the same effect. The first medication I was prescribed was Sulfasalazine; I had to ingest three 600mg tablets 4 times a day. If you’re not interested in doing the math, I was taking 7200mg every day, without much positive effect. Today, I take 1200mg of Lialda daily. The most commonly prescribed sulfonamide for Crohn’s today is Asacol (or its generic equivalents, Mesalamine and 5-ASA ), usually at a 800mg dose three times daily. The side effects are relatively minor, such as excessive gas and bloating. In rare cases, it can exacerbate pre-existing heart and lung cases. And some studies link these drugs to reduced fertility in men.
Everyone has bacteria lining their digestive tract. We actually need them to help with proper digestion. But during Crohn’s flare-ups, the bacterial populations literally explode. Nobody is quite sure why, or what the connection may be. Regardless, most gastroenterologists will prescribe one or more antibiotics during a flare-up. The most common is flagyl, given intravenously.
The first major advance was in understanding the role an antigen called tumor necrosis factor
(or TNF) plays in Crohn’s and the use of anti-TNF drugs in fighting Crohn’s. TNF forms naturally within the body and is one of our immune system’s defense mechanisms against cancer. It works by inflaming the cells around the cancer cells, in essence choking them. Nobody is quite sure why Crohn’s patients suffer this type of inflammation, but studies in the mid and late 1990’s showed that anti-TNF drugs actually reduced the chronic tissue inflammation. Since then, drugs like Imuran or 6-Mercapturine (6-MP) have been introduced. They can’t actually induce remission, but they are effective in maintaining remission once it’s been achieved. The big downside is since they reduce the body’s principle anti-cancer agent, patients taking them are at much higher risk for developing cancers. Recent studies show the possibility that Crohn’s patients who have been on one of the anti-TNF medications for extended periods are at substantially higher risk for a type of leukemia.
Biologics (TNF-A inhibitors)
An offshoot of anti-TNF medications, biologics as used in Crohn’s treatment are designed to essentially “turn-off” the immune system. There are three currently in use: Remicade, Humira and Cimzia. Each has some unique side-effects; ask your doctor about them. In 1998, Remicade was the first of these drugs approved for use in Crohn’s, so it has the longest track record. However, it also has the most common allergic reactions and needs to be administered by IV over a course of several hours. Humira and Cimzia are similar to one another, but whereas a Cimzia injection can last 4 weeks, Humira needs to be injected every other week. Generally speaking, since the immune system is kept in a very depressed state while taking these, the patient is very susceptible to any airborne illness and contracting one can be deadly. If you are planning to take one of these, know the risks and make certain you discuss them with your doctor. I’ve been taking Cimzia for close to a year and it has made a HUGE difference in my quality of life.
Crohn’s patients often require surgical procedures. These can range from the relatively benign (colonoscopy for examining the lower GI tract and removing polyps for closer examination) to a full-blown ostomy. Before undergoing any surgical procedure, make certain you discuss all of the implications with your GI doctor and meet the surgical team. You should also try to have a trusted friend or family member with you for these consultations – odds are if you’ve reached this point, the pain has also become nearly unbearable. Whether you’re fighting the pain au natural or with painkillers, you won’t be in the best command of your mental faculties.
For Crohn’s patients, diet is truly a four-letter word. We obviously need to eat, but many foods (including what can seem like most of the yummy ones) will cause an exacerbation of symptoms. Eat too many of them and you may wind up with a full-blown flare. Match that with the fact that as a Crohn’s patient, you need to ensure good nutrition even more so than most people and you stand a good chance of being baffled by your diet – or going insane J. Your best bet is to avoid foods that are hard to digest, such as nuts, popcorn and seeds. As for everything else, keep a log of everything you eat and if you experience increased symptoms, then avoid it in the future. Personally, I try not to exclude anything unless I’m in a flare – I just make certain my “avoidance” foods aren’t a constant part of my diet.
Also, you may want to consider nutritional supplements if you find you can’t get enough nutrients from eating. These can range from vitamin supplements to more robust liquid supplement shakes, like Ensure or Boost. In any case, working with a registered nutritionist is always a good idea. And one more thing: most Crohn’s patients find eating large meals tend to make them symptomatic. Try to eat smaller meals and eat more often. For instance, I typically eat 6 times a day – I cover this in more detail in the lifecyle adjustments post.
There are quite a few alternative (or herbal) therapies out there for Crohn’s patients. I do not recommend any of them, although parts of them can be helpful. For instance, I find mint tea can help calm my stomach if I overdue it. Regardless, before trying any of them, be sure to check with your doctor and investigate them fully to find out how they can interact with your medications or each other. Just because they’re herbal or all-natural doesn’t mean they can’t have side-effects.
Perhaps the most important part of treatment is your ongoing care. Your doctor will likely send you for seemingly endless tests. CAT scans, GI studies, barium enemas, X-rays, colonoscopies, blood tests and more are part of the typical “Crohnie’s” regimen. Undergoing these and maintaining your relationship with your doctor are crucial in keeping Crohn’s at bay.