An Insider’s Guide to Managing Crohn’s and Colitis

One of the best things a patient can be armed with is knowledge. In my experience, the more that I understand about my illness the better I am able to live my life with my Crohn's disease. In the past I made a lot of mistakes – I stopped taking my medications when I was growing up because I didn’t understand why it was important to keep taking them even when I felt well. I put off doctors' appointments, I decided that I wanted to treat my disease "naturally" (whatever that means), and I let inflammation go uncontrolled, which ultimately led to complications and surgeries down the road. I didn’t have good doctors, I didn’t have support from loved ones, and I didn’t have the tools/education to help myself. As I grew up and was able to take my health into my own hands more, I armed myself with accurate information about IBD that led me to make better decisions for my health. Understanding IBD has helped me feel like an empowered patient. Below I left a list of 15 questions that I think are very important to have the answers to as a patient with Crohn's or ulcerative colitis. It’s probably not possible to ask all 15 questions in one appointment, so break them up into a few appointments. Bring some paper and a pen with you to jot down the answers and it also helps to bring another person with you because 2 sets of ears are better than one! 15 Questions every IBD patient should have the answer to about their Crohn’s or UC: Do I have Crohn's disease or ulcerative colitis? How do you know this? Where is the inflammation in my gut located? Large bowel, small bowel, both? Is it continuous or are there skip patterns? Do you see any other bigger intestinal complications? Strictures, fistulas, abscesses? Would you classify my disease right now as mild, moderate, or severe? If I am on steroids what is your exit plan? What drug therapy (or combination) do you think would be best for me and why? How will we know if this medication is working for me? Why do I need to take my medication all the time and what happens if I don’t? How will you monitor my disease to get me into remission and to keep me there? How do we address symptoms that occur even when I am in endoscopic remission? What are the possible side-effects of my medications? What are the possible repercussions for not taking my medications? Is there a diet that can treat inflammation caused by IBD or does diet just help control symptoms? Where do you recommend I get information about IBD? Do you provide patients with educational resources or do you have patient education nights? You can get a printable list of these questions here: Questions to Ask Your GI. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Often, I close myself off from friends and family when in a flare from ulcerative colitis. The considerate "how are you feeling?" conversations are met with my unenthusiastic one-word answers. I usually feel irked trying to describe a flare to someone who will not understand the experience from my point of view. Perhaps they will comprehend, and I am just pessimistic. Though, explaining what it's like to be sick and subsequently being met with unsolicited comments and advice drains my energy and patience. Unwanted comments about ulcerative colitis or Crohn's "Don't eat spicy foods." "You don't look sick." "Maybe you're too stressed." What emotions do these phrases (or similar ones) stir up in you? Fear, hope, wonder, or excitement at telling your story? My disdain for those comments stems from feeling inadequate trying to explain an all-encompassing feeling. If only there were a way to immerse a healthy person in some virtual reality headset game featuring life with ulcerative colitis or Crohn's disease. A thrilling adventure filled with anemia, brain fog, and extended stops in the bathroom! Until that day comes in the near-futuristic future, we have spoon theory. What is spoon theory? Christine Miserandino developed spoon theory to answer a question from a friend who asked what it felt like to be sick and have Lupus. Like many of us, Christine expressed difficulty describing her life with a chronic illness. So, she grabbed spoons at a nearby table for a visual representation. The spoons signify the amount of energy you have on a given day. People with chronic illnesses like UC or Crohn's only have limited spoons, whereas healthy individuals possess far greater numbers. Activities done during the day require energy and consequently take away spoons. Brushing your teeth, that's one spoon. Bad night's sleep? Instead of starting with 20 spoons, you now only have 15 to use. Sickness takes away many luxuries that are afforded to healthy people. Individuals with chronic illnesses must learn to navigate the consequences of each choice made on a given day. Our energy levels fluctuate with UC and Crohn's Substituting Lupus for living with UC or Crohn's and it fits equally into the framework of spoon theory. Energy levels fluctuate dramatically among us when we are flaring and even when we are not. Food choices that trigger flares must be constantly scrutinized and sometimes even eliminated from our diets. Surgeries are taxing on physical and mental health. There may be good days followed immediately by bad ones. On the bad days, we may want to curl up into a ball and sleep, and that's ok. It's OK you have limits We shouldn't feel bad for prioritizing rest. Planning days ahead in detail (with wiggle room) may help conserve spoons. For example, meal prepping on a Sunday can drain that day away; however, this may lighten your load for the rest of the week. No matter how small or insignificant, try actively finding ways to recognize limits and make time for yourself. Maybe take a deep, calming breath before answering when someone asks what it feels like to be sick. Importantly, you can now use spoon theory to help guide family and friends in understanding your unique life! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"], It's 3 p.m. on a Thursday and you’re on your 4th doctor's appointment of the week. Glancing down at your bandaged arm you count the bruises and scabs from a variety of tests. The life of a chronic patient. It's now your 15-minute opportunity to try and connect with your doctor about your disease and treatment. 15 minutes to discuss something that takes over every part of your life, every minute of every day. You only have 15 minutes. It's no surprise that more often than not patients complain about not feeling heard, not connecting with their doctors, or being ill-informed. I feel like I've finally gotten to a place of empowerment when it comes to my disease, and yet I'm still fighting to be heard, seen, and taken seriously. As a person living with ulcerative colitis, I have become frustrated. I've hit a wall. With the frustration comes depression and a lack of motivation to participate in my own health advocacy. Every time I speak up, I get shut down. New symptoms and diagnoses pop up faster than I can keep up with. Fighting my medical team while trying to raise a human in the middle of a fatigue-filled week is not easy. Sometimes I just give up, but as a mother, giving up just isn’t an option. How do I find a way to stop being the disgruntled patient and become the empowered patient who communicates effectively with my doctors? These 3 tips can help you. Go in prepared The day before your appointment, add a bunch of questions and concerns in the notes section of your phone. If you are wanting to talk about treatment options, clinical trials or tests, go in with some information you researched. Start a conversation that will help move your treatment progress in the right direction. If your time runs out, ask if it would be possible to set up a call to finish up the conversation. Don't leave your appointments feeling defeated or steamrolled. Get a second opinion Don't be afraid to seek a second opinion in order to reach a conclusion about your disease and treatment options. I know that it can feel like cheating on your doc, but you have to put your health first. Empower yourself Knowledge is power. Research. Research. Research! Reach out to IBD advocates online. Weigh pros and cons. Consider all elements of your life when thinking of new treatment options. Make sure to include these while advocating for yourself to your doctor. Take all the information you have and present it to your doctor for an in-depth discussion. Insert yourself into your treatment plan. Consistently advocating for time with your doctor is frustrating, but you must balance it with everything else you are going through. Staying consistent and organized will help you feel empowered. And feeling empowered will help you push through on those days you don't want to be a patient. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site" title="Sign up for emails from {{site-name}}:"] Did you ever notice that whenever the slightest thing feels off in our bodies, we automatically think the worst? Despite feeling this way before – fatigue, muscle aches, urgency – we just always think "but this time it could be different." Why do we always assume the worst? Assuming the worst when it comes to our Crohn's disease or ulcerative colitis is only natural. However, assuming the worst doesn't lead to anything productive or positive. And here's why... Ignorance is bliss... Right? I've seen this a lot in my career as a health coach and as a patient. When symptoms start to arise, many patients choose the "ignorance is bliss" route and avoid calling their GI out of fear that it could be something terribly serious. But, as you may have previously experienced, avoiding the doctor never leads to anything good. If you have mild inflammation that is causing your symptoms, it will only escalate without medical intervention. If you have low iron that is causing fatigue, your levels will only continue to drop until you get lab work and decide on a supplement plan. And, if either of these examples is left untreated for an extended period of time, you may find yourself in a serious condition that requires extensive treatment and/or hospitalization. Your mind can wreak havoc on your gut You may be familiar with the gut-brain connection, but if not, I will summarize. Researchers have found significant evidence suggesting that irritation in the GI tract may affect the central nervous system (CNS) and trigger mood changes. And, in turn, when our mood changes and we get anxious/stressed/depressed, we begin to feel physical symptoms in our gut. This vicious cycle continues and we become more mentally and physically ill the more we worry about our symptoms. So, adding more anxiety and stress to our bodies only makes our symptoms worse. Despite it being terribly difficult to "just calm down" it's honestly the best thing we can do when feeling the onset of symptoms. It's easy to become irrational One "off" feeling can easily lead you down the rabbit hole of Google, and you go from having a minor stomach ache to thinking you only have two months to live. You automatically assume the worst, worried that perhaps it isn't "just Crohn's" and could be something more acute. However, there is a high probability that it simply is IBD-related and that it isn't too serious. When I find myself spinning out of control with "what ifs", I like to write down what I know is true in order to be realistic about what is going on. I will write down my symptoms, the fact that I had a good report from my recent lab work, that I am chronically low in my B12 so that may be playing a role in how I am feeling, etc. Writing down what you know is true makes it easier to stop yourself from assuming the worst and putting more stress on your body and mind. Not worth avoiding the doctor in the long run As you can see, assuming the worst when it comes to our IBD symptoms may be understandable, however, it does not benefit our mental or physical health. The best thing to do when feeling the onset of symptoms is to contact your care team and start with the least invasive tests (blood work, stool sample, etc.) to get a better understanding of what is going on and then if it needs further examination, take the necessary steps. Just take a deep breath – it will most likely be ok! [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Inflammatory bowel disease (IBD) is a family of chronic bowel diseases caused by inflammation in the body, especially in the intestines. IBD includes Crohn's disease and ulcerative colitis (UC). It is a relapsing disorder, meaning that people living with IBD often experience flares and remission.1 What is remission? The treatment goal for IBD is remission. Remission is a period in which you do not have any IBD symptoms. Because IBD is a relapsing disorder, someone who is in remission may come out of remission and then experience a period of acute symptoms called a flare or flare-up.1 However, the idea of remission has changed over the years. Experts are now learning that IBD inflammation may still be affecting you even if you do not have symptoms.1 [native] What is mucosal healing? Inflammation in IBD affects the mucosa, or the lining of the intestines. UC usually affects the colon and rectum. Crohn's can affect any area of the digestive tract from the mouth to the anus.2 Inflammation can affect your gut even if you are not feeling symptoms. That inflammation can lead to long-term health problems, disorders, and future surgeries. Aiming to make the lining of your intestine healthy can prevent many of these complications.1 To make sure the mucosa is as healthy as possible, doctors focus on "mucosal healing." This begins with looking at the walls of the intestines with a camera to see any damage. These procedures are called endoscopy and colonoscopy. Doctors can also run blood tests to find out if there is inflammation in the body.1 How does mucosal healing work with Crohn's and UC? There are several methods doctors may recommend for people with IBD to work toward mucosal healing. Drug therapy It makes sense to take IBD drugs when you are experiencing symptoms or a flare. However, your doctor might ask that you continue certain IBD drugs even when you are in remission. This may help you stay in remission.3 The drugs your doctor might want you to keep taking include mesalamine and thiopurines. But other drugs, like corticosteroids, may help stop a flare but should not be taken to stay in remission.3 It is very common for people with IBD to stop taking their medications when in remission. However, keeping up with your prescribed drug therapy can help prevent relapse and more serious complications.3 It is also important to talk to your doctor about other drugs you might be taking. Certain antibiotics and non-steroidal anti-inflammatory drugs (NSAIDs), which include Advil and aspirin, have been shown to cause IBD relapse.3 Gut microbiome There are multiple factors that combine to cause IBD. UC and Crohn's are mainly autoimmune diseases, which means that the body mistakenly attacks healthy cells. However, people living with IBD also have changes in their gut microbiome.2 Your gut microbiome is the community of bacteria that live in your intestines to help you digest food. It works best when the bacteria are in balance. Some IBD maintenance treatments focus on trying to correct the gut microbiome by restoring this balance.2 Probiotics Probiotics are pills that contain the same healthy bacteria that live in your gut. Probiotics are thought to help improve gut bacteria balance to improve digestion. Experts also believe they may help heal the mucosa in IBD.4 A group of scientists reviewed all the studies looking at probiotics and IBD. They found that probiotics are effective to balance the gut microbiome. They did notice, however, that they seem to work better in people with UC than in people with Crohn's.4 Diet Many people living with IBD know that certain foods seem to trigger or worsen their IBD symptoms. Researchers have looked at how different diets can affect IBD symptoms and mucosal healing. But there is no clear answer for what diet may be best for IBD.2 Diets that seem promising for people with IBD include semi-vegetarian and plant-based diets. It also may help to cut out carrageenan, an additive in many foods.2 To learn more about IBD remission and what you can do to stay in remission, speak to your doctor. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I've been traveling a lot lately and to be honest, it never gets any easier. Living with Crohn’s disease makes everything I do that much harder. I could have a few good days or a great week. I could be feeling good enough to climb a mountain one day and hospitalized the next. With these wildly unpredictable conditions, you honestly never know. Throw in a new environment, a new culture, new and different foods, and spices... It gets a little crazy. Technically this doesn’t just apply to travel. Sure, travel makes my life crazy, but so does watching my goddaughter or moving. This is why I’ve decided to share my top tips for dealing with the changes and unpredictability of life with Crohn’s. Tips to deal with the unpredictability of Crohn's 1. Prepare to be unprepared: As a society, I truly believe we are trained to be over-prepared. We want to have huge savings before we travel, we want to be CPR certified before we have kids. This stuff makes sense! But there’s no way we can possibly prepare for everything life has to offer. Sure, you can have a hospital bag packed in anticipation of your next stay, but what about when you get there? Have you prepared for each and every interaction you’re going to face? What about when last-minute changes are made to your insurance policy? Are you going to be prepared or mad at yourself for your lack thereof? 2. Keep your doctor's information handy in your wallet or bag: Although you can’t prepare for everything, there are certain things you can do in order to make your life easier in advance. One is keeping your doctor’s information handy in case of a Crohn’s emergency. Since I was in my teens, I made it a habit to keep a few of my doctor’s cards on file. Super helpful. Not only did I have the phone number, but in case I needed to send a quick fax or give the address, I always had the relevant information needed! 3. Water doesn't solve all problems, but it will solve a lot: Now you see so many ads for random teas, coffee, even milk! While they may be tasty, nothing is going to satisfy your body in the same ways water does. Don’t forget to drink water. A hydrated body is at least a somewhat happy body! 4. Face masks are not overrated: As a new "world traveler" I will say, I've always worried about how I would come off to people, walking around wearing a face mask. I hate being the oddball. I also hate people viewing me as the “sick girl.” Although I really wouldn’t be wearing my face mask for myself, it’s actually for others! There is absolutely nothing wrong with wearing a mask in dirty places like airplanes or hospitals. 5. Be flexible: Remember, everything in life requires flexibility. Whether it’s related to your condition or simply hanging out with friends. You must be willing to compromise and at times even miss out for your well being and that of others. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"]

An Insider’s Guide to Managing Crohn’s and Colitis

15 Questions Every Patient With IBD Should Ask Their GI

Explaining IBD to Others: One Spoon at a Time

This or That

The Disgruntled Patient

Avoiding the Doctor to Avoid Bad News

Understanding Remission in IBD

My Top Tips for Dealing With the Unpredictability of Living with Crohn’s

My Introduction to Ulcerative Colitis

Just Because You Have Crohn's, Doesn’t Mean You Have MY Crohn's

What I Wish People Understood About Life With Ulcerative Colitis

Focusing on Safe Foods Instead of Triggers

Learning About Anemia the Hard Way With UC