As with any chronic illness, there are many misconceptions out there, some more common than others. Over my last eight years of having Ulcerative Colitis, I have heard many of these and do my best to correct them. Some I have heard more often and am aiming to debunk these for myself and the IBD community. The more we share and raise awareness, the more we empower ourselves and others while breaking common stigmas about our diseases.
- Surgery will cure IBD– This is by far the most common myth that I hear for IBD. It’s even something I thought not long after my diagnosis. While it’s true that surgery may lead to remission there is no guarantee. Currently, there is no cure for IBD, although there are many different medications that may also induce remission. Depending where you live will usually decide which order doctors try these two different approaches. Here in the US doctors will try prescribing medication first, while in the UK it is more common to consider surgery first. Everyone’s journey is different, and there is no right or wrong approach, just remember there is no cure.
- IBD only affects the intestines– While I know IBD affects the intestines and it would be logical to think it only affects that, it actually impacts many other areas of health. Just so we are all on the same page, Crohn’s disease can affect any part of the intestine; while UC is localized to the colon. Although these autoimmune diseases manifest in the intestines they can also affect eyes, joints, kidneys, skin, liver, and bones just to name a few. Common complications include; anemia, arthritis, osteoporosis, osteopenia, gallstones, pancreatitis, and severe fatigue. IBD is much more than a ‘bathroom disease’, and can impact every area of our daily lives from work, to school, to social life and beyond.
- IBS and IBD are the same thing– While both of these have to do with the intestines and have similar initials, they are in fact very different. IBS stands for irritable bowel syndrome while IBD stands for inflammatory bowel disease. IBD is generally considered to be more serious as it is an autoimmune disease while IBD is a syndrome. Not to say that IBS cannot be painful or impacting, trust me I actually have both! Now that we have a basic understanding of what they are, how do we treat IBS and IBD? IBS is often treated with education. Many IBS patients with mild symptoms can control their syndrome by reducing stress and dietary changes. For moderate to severe patients’ dietary changes may apply as well, but medication is the next line of defense. These are often in pill form and taken daily. Treatment of IBD is a little different. It will most commonly be treated with medication as well, but much more serious drugs. These include; Aminosalicylates, Corticosteroids, Immunomodulators, and Biologic therapies. Some of these come in pill form, but many are intravenously injected over a few hours every few weeks. If these medications do not work, surgery is usually the next option. This might be taking out a small portion of the intestines or the entire colon.
- Having IBD isn’t permanent– I have heard this a few times, but it couldn’t be further from the truth. While there are periods of remission where the disease is not active, it is always underlying and is a lifelong chronic illness. This potentially means that the individual will be sick chronically. Since there’s currently no cure it will not simply go away. Symptoms can also appear suddenly, making us change plans or seem distant. Please have patience with us when this happens, trust us no one is more disappointed we can’t go than we are! It’s important to have supportive friends and family in our lives that understand our illness and help us through the tough times.
- An IBD Diagnosis means you are disabled– While many people that have IBD are considered disabled, it is not because of the IBD diagnosis itself. The IBD may have led to the label of disabled because of complications. This could be extreme thinning of the intestine walls, bowel perforation, or strictures that lead to the removal of some or most of the intestines. Those who have undergone surgery and require an ostomy bag are considered disabled, although they lead normal lives. Another reason a person with IBD may be disabled is due to mobility issues stemming from other complications or additional autoimmune diseases like Lupus or MS. However, just because someone with IBD may or may not be disabled remember to treat them with respect and take their symptoms seriously.
I hope this helps debunk some common myths about IBD and gives more insight into these chronic illnesses. The more that we know, the more understanding and compassionate we can be. The IBD community is filled with amazing people that are usually open to explaining how their illness affects them, however, it is not our responsibility to educate everyone. If you know someone with IBD, do your own research and show your support by not spreading misinformation. Have you heard any of these or other myths about IBD? Let me know in the comments below!
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