| Collagenous Colitis FAQ |
Collagenous colitis (CC) was first identified in 1976 in Sweden and seems to have been studied mostly in northern Europe. It is one of the rarer IBDs.
CC may be one disease (or at least a group of very similar diseases) with three different names: collagenous colitis, microscopic colitis and lymphocytic colitis. These three names may reflect attention to different aspects of the same disease or differing severity. While journal articles argue about which name to use, the symptoms and treatment of all three are virtually identical.
Diagnosis is made from microscopic analysis of biopsies of the colon. The "typical" patient is a middle-aged woman, but children as young as seven and older people have it also. Possible initial (mis)diagnoses include stress, gastroenteritis, Celiac Sprue, Lupus, or irritable bowel syndrome (IBS). It's not unusual for diagnosis to take several years since CC is one of the least common, therefore last considered.
Patients often seek treatment for an elusive form of arthritis as much as ten years prior to problems with diarrhea. This untypical arthritis often affects the back, hips and sometimes jaw. It can come and go, and can change locations. Other associated problems may include: irisitis, purpura, auto immune thyroiditis, pernicious anemia, idiopathic pulmonary fibrosis, fibromyalgia, unexplained severe itching, mouth sores, fatigue, depression, mitral valve prolapse and thyroid disease. There does not seem to be an association with Crohn's disease, ulcerative colitis, or cancer.
Since some of the patients report a close family member with the same unusual diagnosis, there may be a hereditary tendency to get CC. It does not appear to be contagious.
The major symptom of collagenous colitis is severe watery diarrhea (sometimes explosive and as frequent as 30 times a day at its worst) leading to dehydration, weakness, difficulty eating properly, bloating and sometimes nausea. It can come in bouts which are quite sudden (within seconds), and unexplained by diet. During an episode, certain foods, especially high fiber, fat, milk products, spices, and uncooked fruit and vegetables, may aggravate it; however, foods do not seem to be the cause themselves. Some people tolerate any foods -- even when quite ill.
Approximately half of the patients report sudden onset. They can pin down the exact day and location -- often triggered by an initial bout with dysentery, giardia, or other undiagnosed intestinal problem. They then run through the usual treatments for everything they might have only to find CC eventually.
One interesting theory is that the damage is caused by a bacterial toxin. It's clear that more research is needed to determine the cause as well as treatment. An early guess was that this is an auto immune disease, but that hasn't been conclusively established. Another theory suggests that NSAIDs (such as ibuprofen) might be responsible. It's possible, however, that patients were simply taking them due to their arthritis-like symptoms. Once they have developed CC, some patients find it difficult to tolerate NSAIDs. |
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| TREATMENT: |
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Useful information is sparse. Many patients improve with Sulfasalazine, but are not necessarily cured. For the many who don't tolerate Sulfasalazine, Asacol is often prescribed. These medicines are thought to act as anti-inflamatory agents rather than germ-killing sulfa drugs. Anti-diarrhea medicines such as Imodium and Lomotil are used for temporary help, but tend to just delay the diarrhea.
Studies done with Prednisone do not sound very promising for long term use. The side effects can eventually be worse than the benefits. Most patients do respond quickly to Prednisone, so it can be useful to stop a severe attack. Anyone considering long-term Prednisone use should carefully consider the possible serious degenerative problems for many patients.
Cholesterol-lowering drugs are helpful to some. Fiber such as Metamusil (psyllium) helps some, but not others. Low dose tricyclic antidepressants (such as doxepin and elavil) can sometimes help with the joint and muscle pain. Treatment is generally very experimental with markedly different results in different people.
Some people report excellent short-term results with certain antibiotics, however, the results aren't lasting. It's unknown whether the antibiotics simply treat bacterial overgrowth or actually treat CC directly.
Surgery is a radical approach and seldom used, as CC is not confined to a small area. Surgery does seem very helpful for some of the most severe cases.
Whatever the treatment, some get better, some get worse and some stay much the same. At this time it appears difficult to predict the future based on age of onset, severity at onset or any other factor.
Areas with little coverage in the literature include: diet, exercise, long-term prospects, and support for living reasonably normal lives. Since this is a chronic disease with so many unknowns and such unusual connections with other health problems, it would seem helpful for each patient to have a good relationship with a primary health care giver, rather than just a gastroenterologist.
Since so little can be done at this time to even alleviate symptoms, it seems important to have some sort of support for practical problems. Patients would do well to do their own research and attempt to remain knowledgeable and current, as few doctors know much about CC. It's important that patients learn how to cope with the difficult social, physical and sometime financial problems brought on by a disease that can change their lifestyle enormously -- although it isn't progressive or fatal. |
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