Diagnosed with IBD. . . Now What? (Pt. 1)

Elizabeth Roberts Health Guide
  • The first thing you’ll do when your doctor tells you that you have IBD is wonder what in the heck those letters stand for. Well, they mean Inflammatory Bowel Disease (not IBS – Irritable Bowel Syndrome) and IBD includes two diseases – Crohn’s disease and Ulcerative Colitis (UC). 

    Your doctor will explain to which you have Crohn’s or UC. He or she will also probably give you an explanation of what the diagnosis means, what treatment they advise giving you, and what your outlook is for living with IBD. All well and good, except that you will be overwhelmed, possibly scared, definitely confused, and won’t take in much of what they have to tell you. Which means once you get home you’ll most likely hit the internet to see what information you can find about your new diagnosis.

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    Start with reputable web sites like this one - www.healthcentral.com/IBD, as well as the Crohn’s and Colitis Foundation of America’s site - www.ccfa.org, or www.IBDsucks.com, or www.ibsgroup.org (it has a sub-forum for people with IBD).

    As you look through any web sites, but especially health-related web sites, realize a few things: 1. there don’t seem to be any two IBDers who can follow the same course of treatment and come out with the same results. 2. you can’t always know who is giving information on a web site, or what they are basing their information - real experience or are they just trying to sell you a new supplement or product? Use your good judgment and discretion about the advice you read. 3. don’t get wrapped up in other people’s problems or experiences of living with IBD. Many of the people who go to health chat rooms really are there to help others. But some people are just there to vent and oftentimes that turns into complaining, whining, and relaying only the worst, most negative details of their illness possible. Go ahead and read about what did or didn’t work for people to get some ideas of what path you might want to go down in treating your own IBD. But, don’t let their experience become your experience. Remember, no two people with IBD have exactly the same symptoms or same experiences living with it. 

    What you’ll find out when you go to this web site or the Crohn’s and Colitis web site is exactly what Crohn’s and colitis are: 
    Crohn’s disease causes inflammation of the gastrointestinal (GI) tract and can involve any area of the GI tract from the mouth to the anus. But, in most Crohn’s patients it commonly affects the small intestine and/or colon. 
    Ulcerative colitis is a disease of the large intestine (the colon) and causes inflammation and ulceration of the colon’s mucosa, or innermost lining. 

    When I was first diagnosed with UC more than 10 years ago I remember first feeling relieved. I finally had a real reason for all my symptoms and problems. It was nice to know I wasn’t crazy or making up the severity of my symptoms. But all too soon, I also realized that just because I had put a name to the disease that had been affecting my life for about 5 years that didn’t mean I had found a way to cure myself. In fact, in that same visit, my doctor also told me that there is no cure for IBD. I went from feeling relieved to feeling frustrated, scared, and angry. And, to be honest, I went home and wallowed in my feelings of frustration and defeat for quite a while. 

  • In the past 10 years since I was given my IBD diagnosis many new prescription medications have come on the market to treat both Crohn’s and UC. There is new information about possible genes that may be the cause of IBD, and the idea that foods, emotions, and bacteria may exacerbate IBD symptoms are no longer poo-poo’d by the medical community. There is also a debate among gastroenterologist as to whether IBD is actually an auto-immune disorder or rather an immuno-deficiency disorder. Either way, it seems that there is something in an IBDers genetic make-up that causes the immune system in the gut to go hay-wire and disable the body’s inflammation response.

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    The first line of treatment for both Crohn’s and UC tends to be using prescription medications to get the inflammation under control. Medications used for both Crohn’s disease and Ulcerative Colitis fall into five categories, or classifications:

    1. Aminosalicylates or 5-ASA’s – are drugs like sulfasalazine, Asacol®, Pentasa®, Rowasa, Canasa, Colazol™, and Dipentum®. These drugs contain 5-aminosalicylic acid and help to reduce the inflammation in the colon’s lining by interfering with the body’s ability to control inflammation. 5-ASA’s are used to treat mild to moderate cases of UC and Crohn’s and are often used long-term to maintain remission. ng remission. 

    2. Antibiotics – the most commonly used ones for IBD include Flagyl® (metronidazole) and Cipro® (ciproflixin) and are theorized to suppress the intestine’s immune system and reducing intestinal bacteria. The best long-term use of antibiotics has been seen in patients with Crohn’s disease who may also suffer from fistulas and/or recurrent abscesses. 
    3. Steroids such as prednisone, hydrocortisone, methylprednisolone, and budesonide (Entocort) are all used to modulate inflammation and are metabolized in the liver. Steroids were some of the first drugs used to treat IBD, dating back to the 1950s, and continue today to be a first-line drug of choice for treating both Crohn’s and UC. Steroids are used for acute flare-ups and work by suppressing the body’s immune system. While this immune suppression helps to lessen the IBD flare, it also can leave some patients at higher risk of catching infections. Steroids are meant for only short-term use.  

    4. Immuno-Modulators are used to weaken the immune system which is believed to decrease the inflammation caused by IBD. The consideration of using immuno-modulators tends to come after patients have failed to respond to the first three classes of IBD drugs – 5-ASA’s, antibiotics, and steroids. The most commonly used immuno-modulators are: azathioprine (Imuran®, Azasan®) and 6-mercaptopurine (6-MP, Purinethol®). However, these drugs act slowly and can take 3 to 6 months for a patient to see them take effect. For this reason, they may be prescribed along with steroids which are faster acting. 

    5. Biologics are the newest class of drugs being used to treat IBD and include Remicade®, Humira®, Cimzia®, and Tysabri®. These are the last line of defense drugs. They are called biologics because they are made, or engineerer, from living organisms such as genes, antibodies, and proteins. The purpose of the biologic drugs is to interfere with the body’s inflammatory response by targeting specific molecular players. This allows these drugs to target specific enzymes and proteins unlike steroids which suppress or block the whole immune system.

  • As with any medications there can be side effects of any of the above mentioned drugs. It is important to discuss the treatment options thoroughly with your doctor and to bring up any concerns or side effects once you have started a treatment program. 

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    Next week I’ll continue the discussion of “What’s next after an IBD diagnosis” by focusing on how diet changes and stress reduction are also an integral part of your treatment. 

    (To read about my personal experience with IBD read my book, Living with IBD & IBS: A Personal Journey of Success – www.ibdandibs.com)  

Published On: February 27, 2009