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. [forumDriver id=14075] 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"], Living with inflammatory bowel disease is such a multifaceted set of challenges. There are obviously physical things we struggle with – from abdominal pain to frequent and urgent bathroom trips, to extra-intestinal manifestations affecting any and all of the other systems of our bodies. But there's 1 in particular I want to write about today. Mental health. Crohn's and UC are more than just physical The emotional and psychological dimensions of living with IBD come in many colors, shapes, and sizes, and I've experienced them so differently as the years have gone on. In the beginning, there were emotions like fear, frustration, anger, and sadness that felt ever-present. And sometimes even all-consuming. Personally, I went from being a mostly healthy young adult to a 23-year-old who couldn't leave home and often spent much time in the bathroom and in bed. It was devastating. I felt betrayed by my body and like I couldn't do anything to gain back control over the situation. Psychologically demanding from the start Then, there was the diagnostic journey. I have small bowel Crohn's disease, which took more than 6 years to correctly diagnose due to its location and my symptoms. During this time, medical professionals I looked to in a trusting manner let me down over and over again, dismissing my pain, stating that I must be struggling with a mental health disorder that was manifesting physically (rather than the other way around), and ultimately trying to tell me that I shouldn't trust my own body or the signals it was giving me. An emotional exhale... 2016-2018 were pivotal years for me in my IBD journey. I was finally correctly diagnosed, and although it took 3 lines of treatment to find the right one, I reached remission status. My mental health took one exhale, and then it began playing the deep seeded what if game. What if remission ends. What if it gets as bad as it once was. What if, what if, what if... I wrote about this a while ago, what it was like to live in the waiting. Always expecting the other shoe to drop. Living in constant fear with IBD For the last few years, the other shoes have been dropping in different ways. While my IBD disease activity has been mostly stable, IBD itself has caused and impacted other health problems I now must contend with more frequently. I constantly feel like I must remain hypervigilant inside of myself, frequently performing body scans, medication inventory checks, scheduling routine and emergent doctors appointments, and understanding the fear that living in flux has brought to my life on a daily basis. Crohn's and UC are psychologically draining This season, I've struggled with an issue not directly related to my IBD, but one tangentially connected – a hernia in my esophagus that has relegated me to an all liquid diet. The pain, physical illness, and weakness I've experienced in the last few months has been all too reminiscent of the years prior to my diagnosis, and it's something I've been speaking openly and candidly about with my therapist. It's greatly affecting how I approach each day. I'll be honest, the fear doesn't just disappear when you hear the word remission – especially with a disease where remission can end at any time for any reason without any warning. I've tried to get used to the unpredictable, but it's been really hard for me. Have you found anything that's worked for your mental health in balancing life with IBD and the emotional anguish of unpredictability? [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] If having Crohn's disease isn't bad enough, lots of us struggle with other digestive symptoms alongside it. For me, one of these is acid reflux: categorised by burping and a strong feeling of acid in my throat. Today I wanted to chat about how acid reflux and indigestion could be connected to Crohn's disease. [forumDriver id=14427] Does Crohn's cause acid reflux? My doctors have told me that Crohn's and acid reflux are not connected, which seems odd considering it's all the same digestive tract, after all. This is because it's thought that less than 1% of Crohn's patients have the type of Crohn's that impacts the esophagus. However, you can have reflux and Crohn's disease at the same time without Crohn's directly being the cause. After all, reflux and heartburn are thought to impact much of the healthy population too – at least 60 million Americans at least once a month, according to the American College of Gastroenterology.1 Increased acid reflux during a flare Other studies show that Crohn's patients do commonly report heartburn and symptoms associated with it. They also note that there may be a connection between these indigestion symptoms and our disease activity: heartburn was found to correlate with increased disease activity.2 This might explain why these symptoms worsen when many of us in our flare. For me, a flare-up and reflux seem to go hand in hand. H. pylori and Crohn's Another connection is with the bacteria H. pylori. H pylori is responsible for things such as ulcers and heartburn/reflux and can be tested by breath and stool test. Interestingly, the connection between this and Crohn's is the reverse. Studies have shown H. pylori was found in a lower prevalence of Crohn's disease patients than it was in H pylori-negative patients, suggesting it could possibly have a protective factor in developing Crohn's and potentially play a part in whether someone or not gets Crohn's disease.3 What triggers my acid reflux I thought I'd share a few things that have improved my acid reflux when it arises. One is keeping an eye on what and how I'm eating. One of the biggest triggers of my reflux is definitely overeating, especially in the evening, which leads me to wake up with reflux in the middle of the night or the next morning. Another thing that triggers my reflux is high-fat and greasy foods, so trying to be mindful of these has really helped. Chocolate is another culprit if I eat in large quantities. What helps my reflux When a reflux attack starts, the first thing I do is reach for a cup of mint tea. (I know some people find peppermint tea can worsen reflux, but it really helps me with indigestion and stomach pain.) I then brush my teeth and use mouthwash, as with reflux, I sometimes get a strange taste in my mouth and this helps with it. I try to stick to small portions of plain foods when dealing with acid reflux and avoid anything too fatty or too spicy. Things like chicken and potato, soup, fish, and rice seem to work well for me. I have also found taking a probiotic with turmeric seems to help my reflux, but I think this is different for everyone so do some research and talk to your doctor before you begin. I'd love to know: Have you dealt with acid reflux? Do you find it coincides with your Crohn's symptoms? Comment below. [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"],Diet and IBD is a complicated subject and one that cannot possibly fit the scope of one blog post. But today I thought I'd talk about snacking, aka my favorite activity if I'm honest with you! Snacking with Crohn's can cause issues. For one, I find that if I overeat my stomach is in pain. I found this out the hard way yesterday by eating a whole easter egg and, yes I know it is only January! Of course, a lot of snack foods (like chocolate and crisps) tend to be high in fat; another potential trigger. If you love to snack as much as me, I thought I'd share my top ten "safe" (only in my experience of course) snack ideas for eating with Crohn's disease. My favorite Crohn's-friendly snacks 1. Rice cakes We all know a bowl of rice is an almost universal Crohn's-friendly food (I'm hoping I'm right but let me know if I'm not?!) so I'm also a big fan of rice cakes or crackers for when I'm craving some crunch. I find these work well with all sorts of toppings: smooth peanut butter (although I only have a spoonful of this to avoid too much fat/fiber); mashed avocado or dipped into hummus. Topping with tuna and a little mayo makes a great lunch option too. 2. Bananas Bananas are one of the few safe fruits for me and they're perfect to pop in your handbag. As well as eating au naturel, I love mashing banana to provide a smooth, comforting dessert type treat. In summer, frozen banana is a great base for dairy-free yogurt. 3. Corn tortilla chips Corn chips (especially made in the oven rather than fried ones) are low in fiber and make a great snacking companion. If you can eat gluten, pretzels work well for this too! 4. Apple sauce Stewed apples that have a thin sauce consistency are really soft and delicious. You can buy these in little pots so they make great snacks when out and about too. 5. Boiled egg I can't personally eat egg but I know lots of IBD folk swear by snacking on a boiled egg. 6. Snack bars There's quite a few gluten and dairy-free snack bars-like LARA bars-that I find are perfect for traveling. They are usually a blend of dried fruit and nuts and whilst relatively high in fiber, I find they're quite smooshed together so are usually safe. 7. Chia pudding If you're looking for a desert style snack, why not try making chia pudding. Chia seeds swell when added to liquid (you could use things like coconut or plant-based milk) and is a good source of soluble fiber. It turns into a gloopy mix which is thought to be quite soothing on the gut compared to most other seeds. 8. Bone broth This one's not really a snack but if I'm hungry and don't really feel I could handle a meal, I'll sip on cups of bone broth instead. 9. Chicken A bit boring and bland but tucking into bits of chicken is a good way of getting some extra protein. Lean white meat is usually a pretty safe bet for IBD from experience. 10. Oatmeal pots Readymade oatmeal pots (that you just add water to) are pretty great for snacking on the go. I'm usually pretty happy with oats as long as they're gluten-free. Check out our Recipes section here [lead_gen showIfLoggedIn="0" campaign="shortcode" source="site"] I lived with pouchitis for many years – the majority of the time I had my J-pouch, actually. Having a J-pouch due to ulcerative colitis I was diagnosed with ulcerative colitis in 2007, but my colon was whipped out before I even had time to really process what that even meant. Because I'd been so unwell, the recovery was a long one. One year after that, I had surgery to create my J-pouch. A J-pouch is basically a replacement rectum, built from loops of small intestine and connected to the anus. I experienced pouchitis quickly My first experience of pouchitis was before I was even using my J-pouch! It wasn't even connected yet, and I started experiencing tenesmus (that cramping in the rectum feeling) and urgency, due to inflammation. Of course, the urgency was only to pass the mucous my intestine was creating. I had a course of steroids and used foam enemas at night to calm the inflammation down. I should have known then that it wasn’t going to be an easy ride. Share your experiences: Take our In America survey! Looking for more info about ulcerative colitis A year after it had been created, I had the J-pouch connected up. I expected the recovery from having it connected to be difficult, based on the booklet I'd been given from the hospital and what I'd read online. It was 2009, so I had not been talking to other people in the IBD community yet. I literally just looked it up online on a library PC. The information wasn't very patient-orientated. I thought I was going to have to retrain my muscles, but that wasn't the case for me. I think, both fortunately and unfortunately, the fact that I'd had pouchitis in my pouch before it was even connected had meant that my muscles had still had to work to "hold it in." I was glad to be free of my stoma I was thrilled to be free from my ileostomy. I'd had a really difficult time with it due to leaks and burnt skin. I now realise that I should have received better support and care from my healthcare team, but I didn't know that then. I thought that's what life with a stoma always was, so it had impacted my mental health a lot. Pouchitis was a constant battle It didn’t take long for pouchitis to raise its ugly head again. I had constant abdominal cramps, and it was tender to touch. Toilet trips were frequent and urgent, and the tenesmus was back. Sometimes, it was so inflamed I could feel my pouch move with every footstep I took. Between having it connected in 2009 and 2014, I'd had constant scopes to confirm that I had active pouchitis. The antibiotics that are usually prescribed for it here in the UK didn't help ease my symptoms. [forumDriver id=14206] A brief UC remission I tried combinations of antibiotics and prescription probiotics, but the only thing that was helping me was steroids (prednisone). Eventually, I couldn't wean off the steroids because the flare returned when I started tapering (lowering) my dose. I then moved on to azathioprine, and I had a wonderful 10-month remission! It was blissful. Finally, I could go to festivals and out with friends without the constant need for painkillers and a toilet map! But I began flaring again in 2014, during a particularly stressful period involving a bad break-up and a swift house move. Money was tight and that was difficult, too. Ongoing pouch problems The plan was to start infliximab. In preparation, I had a chest X-ray, blood tests, and a flexible sigmoidoscopy. That scope led to the identification of some severe strictures (narrowed areas of intestine), that they couldn't get the scope through. More tests were ordered to get a better look. My IBD nurse said I needed to start thinking about the possibility of a pouch excision and wanted me to see the colorectal surgeon. I asked to be referred to another hospital, as I'd had traumatic experiences there. Surgery and an unplanned pouch rest Those additional tests led to an emergency surgery to remove an abscess and to untwist my intestine, thankfully at the new hospital. I woke up with an ileostomy again because my pouch had been ripped during the surgery, and it needed time to heal. I was already heavily involved in the online IBD community by then, so I'd learnt a lot about ostomies. That, and the fact that the new stoma was simply built better, meant my experience with it was completely different to my first one. I was able to enjoy life again, and apart from the loperamide to thicken up my output, I was medication- and pain-free! I debated not having the J-pouch re-connected, but the surgeon said it might behave better after its rest. So I thought I'd give it a go so I didn't always wonder "what if?" Pouchitis after the pouch rest It didn't behave better. Shortly after being reconnected, pouchitis came again. Oddly, the symptoms differed. I experienced a lot of trapped wind, which had never happened before. This time, there was blood in my stool, too. Scopes confirmed bleeding ulcers in my J-pouch, which I'd not had when my J-pouch had been connected previously. Flares had always involved inflammation, but never ulcers. Continued complications My IBD team said we had to think about it like a new pouch, due to its rest, so we had to start from square 1 with treatment options rather than just heading straight to infliximab. I didn't have prednisone again. My IBD team felt I’d had my quota for life. I didn't want it anyway because it had affected my mental health so badly the time before. I tried all of the other medications I'd tried previously plus infliximab. It became clear that the best thing for my quality of life was to remove the pouch in favour of a permanent ileostomy. J-pouch excision I asked to be referred back to the surgeon and hospital I'd had my previous 2 surgeries at. My IBD team was very accommodating, and I eventually had my J-pouch removed in 2018. Sometimes, I can't help but regret my decision to have the J-pouch, but there really is no point in looking back and wondering "what if." I can't change anything now. It's just a shame so many years of my life passed me by, whilst I felt like all I could do was exist rather than actually live it. Ulcerative colitis certainly is a journey I'm in a better place now, physically and mentally, despite having secondary fibromyalgia and bladder muscle dysfunction following my last surgery. In some respects, I feel very lucky. I have some wonderful friends, who I only met because of my journey and online activity in the IBD community. I love my job, and that's something that would never have happened if my life hadn't gone the way it has. Funny, things always seem to work out in the end. 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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 Emotional and Psychological Dimensions of Living with IBD

Acid Reflux and Crohn's Disease

My Favorite Snack Ideas for Eating with Crohn's Disease

Living with UC and Pouchitis

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