Inflammatory Bowel Disease (IBD)

You have a friend and one day they tell you they have Crohn’s disease. Or maybe you’ve known for ages, but it’s only been recently that they’ve started to struggle more. Either way, because you’re a kind and decent human your main question is, “How can I support my friend? What do I do?” First of all, Crohn’s disease is a type of inflammatory bowel disease (IBD) that may affect any part of the gastrointestinal tract from mouth to anus. Symptoms often include abdominal pain, diarrhea, fatigue and weight loss. Think of it as having about of food poisoning that stays with you for the rest of your life. Some people have next to no symptoms for years, while others have severe symptoms that can greatly impact their lives. It’s unpredictable, chronic, and can be difficult to talk to people about. Once you’ve worked out what Crohn’s is, that it’s not contagious, and that you can’t cure it through (insert spurious cure here), you’re ready to step up into finding genuine ways to help your friend. From over a decade of experience, here’s what has helped me: 1. Be there. The most important thing is to be there for them, be their friend. You’ll make mistakes, but they will too. One night you might share your popcorn with them and send them to the emergency room – oops. But hey, they missed your birthday party, again. It’s ok to say the wrong thing, do the wrong thing or feel a little unsure. All friendships can be a bit like that, but I promise it is better to hang in there and make a few mistakes than it is to disappear. 2. Accept they may miss your important things. Sometimes, when Crohn’s is flaring, or even when it is in remission, it can be very difficult to stick to plans. This can be because of fatigue or because your friend is stuck on the loo, or a myriad of other plan ruining symptoms. It can be incredibly frustrating for both of you. It’s even worse when it happens a lot. The best thing you can do is understand that they are trying, accept that this time they might not be there and will try again a different day. No matter how frustrating it is for you, it’s probably worse for your friend who is feeling unwell, upset they let you down, and angry that their body won’t let them do what’s important to them. Let them know it’s OK. 3. If they say they need the loo, they need it now. Not in 10 minutes, not just after you’ve finished applying your eyeliner – now. If you love your friend, like them, or even have some basic human respect for them, let them get to the loo. If you’re driving and they say this, think fast and drive to the nearest loo. If you’re in a queue, they go first. Don’t decide to just finish your conversation, don’t get in their way, just let them go. 4. Let them poop in peace. There is some unwritten female rule that when someone says, “I’m just going to the loo,” all women must answer, “Oh yeah, me too.” Then you all go together and feel united in your femininity. Maybe guys do this too, I don’t know. But for your friend with Crohn’s, this might not be great. They’ve got stuff to do in there, it might take some time, it might be noisy, it might smell. You know what, they can probably handle it alone. In fact, it would likely be less embarrassing for them if you didn’t follow them in, wait outside, have a conversation with them and generally be there while they butt vomit into a toilet. It’ll be a shame to break the sacred toilet gathering, but your friend will silently thank you. 5. Let them make mistakes. Remember how you drank a bottle of wine, followed by the mystery cocktail and then spent the next morning groaning in bed?  Well, that’s similar to the time your friend with Crohn’s ate the delicious sweetcorn knowing full-well that it would hurt them, devoured it with reckless abandon and then spent three hours curled up in a ball on the sofa silently sobbing to themselves. Just because your friend has a disease doesn’t mean they’re any less ridiculous than the rest of us. Sometimes, the temptation is too much to bear. You know what, it’s their body, their time curled up in a ball and their decision. Let them make it and be there with a hot water bottle afterwards. 6. When they’re in pain, be practical. Pain can make it difficult to think straight. If your friend is in pain and curled up then see if they need these things: water and pain medication, a hot water bottle, blanket, a bowl in case they might be sick, peace and quiet, or company. A hot bath can also help if the pain isn’t too bad. If they’re clearly in severe pain then ask if they need you to call a doctor, or take them to an emergency room. If they’re in severe pain or vomiting, and struggling to answer your questions, then it’s probably a good idea to get some medical attention – but always ask them first. Please don’t panic, just try and help them to get comfortable. If they end up asleep, smiling or can move away from the sofa, then you’ve done a great job. 7. Check in and find out how they really are. It’s easy to hear your friend talk about all that’s going on with them without really hearing them. What are they saying to you? How would you feel in their position? There is a lot of pressure on people with chronic illness to push through and pretend things are going OK, even when they’re struggling. Make time for your friend and ask them how they’re coping. 8. If they’re struggling, offer to help them. So, you pop round your friend’s and you see their house is a mess, the washing is piled high and they’ve got no food in the fridge. If they usually cope well and recently they’ve started to let things slip, it’s a good sign that they may be too unwell to keep up with day-to-day tasks. There’s noneed to make a big deal about it, just take them to the shop when you go, orask if they need a hand with the washing. It can be hard to admit it when you need help, but someone offering without judgement can make it that much easier. 9. If they have an accident, don’t overreact. Crohn’s is a rubbish disease. One of the things that is most difficult to deal with is that sometimes you don’t reach the toilet in time and you have an accident. There’s no way to sugar coat it, it’s embarrassing.  It’s probably one of the things that people with Crohn’s fear most. If your friend has an accident while they’re out with you, stay calm and be practical. Get them to a private place where they can sort themselves out. Try and use your initiative. What do they need? Run to a store and get the things. Think wet wipes, change of clothes, and a plastic bag. But most of all, let them know it’s OK. It doesn’t change anything, they’re still awesome. They’re still amazing and you love them just the same. 10. Look after yourself first. First and foremost, you’re a friend. You’re not a carer, you’re not a parent, you’re a friend. The quickest way to make someone feel like a burden is by making them a burden. So, take care of yourself first. Support your friend in a way that seems natural to you. Do it because you love them and because you enjoy spending time with them. Remember, it’s easier for your friend to ask for help and support if they know you’ll say “no” if it’s too much. If being there for your friend feels overwhelming or difficult, it probably isn’t going to benefit either of you. 11. Let them support you too. Often people say, “I can’t believe I’m telling you this when you have so much on.” But, your friend will still want to hear your stuff. Just talk to them like you always have done. 12. Finally, have fun with them. Your friend with Crohn’s is just that, your friend who happens to have a disease. They are a friend first. If they’re struggling to do the things you usually do together, find ways to have fun together that they can enjoy.  Can’t shop for hours? Maybe just go for an hour. Struggling to leave the house? Go round and watch a movie. Can’t go out drinking right now? Go to them and have a pamper session. It doesn’t matter what you do, just do it together, enjoy each other – that’s why you became friends in the first place. Because they’re great, you’re great and you’re even better together. We want to hear your story. Become a Mighty contributor here . Thinkstock Image By: tomap49

During my interview with Dr. Rajeev Jain, MD, he said, “Stool is cool.” As a person living with ulcerative colitis (UC), I not only laughed out loud, but I also felt comforted that a gastroenterologist (GI) created his own way to normalize the conversation about inflammatory bowel disease. Dr. Jain is a partner at Texas Digestive Disease Consultants, as well as the Chief of Gastroenterology at Texas Health Dallas. He sits on the board of directors for the American Board of Internal Medicine and serves as the Patient Medical Education Advisor for the American Gastroenterological Association. Basically, the doctor knows his stuff when it comes to supporting people living with UC and encouraging a healthy rapport with his patients. UC is a type of inflammatory bowel disease (IBD) that causes irritation, inflammation and ulcers in the large intestine. It is a chronic condition, which currently has no cure outside of removing part or all of the colon. I caught up with Dr. Jain to talk about how doctors can work more closely with patients, and vice versa, when it comes to treating diseases like UC. As a patient myself, it’s important to me to have a GI who cares about my quality of life as much as treating my UC. Dr. Jain is my type of GI; he truly cares for his patients, and it shows in our conversation. Here’s what he had to say about… …that scary first appointment. My first thing I want to know is, What were your symptoms at the time you were diagnosed? How long did you have those problems before you were diagnosed? One person was having rectal bleeding for almost a year and a half before he went to a gastroenterologist and got a colonoscopy, which showed proctitis. The majority of our IBD patients are young, so I’m sure, at first, he was told it’s hemorrhoids or something like that. So, I also want to know, What were your other manifestations? Were you losing weight? Did you have a fever? Did you have extra-intestinal manifestations of colitis, such as mouth ulcers or joint pain? Things like that. What did they see on the colonoscopy? What was the disease activity? I need to have the records so that I can objectively see what was seen. For an established patient that’s now moving their care to me, I want to have all those data points and history from the patient in their own words, not just from what I read in the records. In that person’s case, for example, he was only taking his medicines when he would have more symptoms. And he was surprised when I told him that he had a chronic medical condition. I pulled up a picture of the colon and I showed him what the initial disease distribution was and what was on the second scope. His eyes were like, So I’ve got a chronic medical condition . This guy was diagnosed six years ago! …addressing the biggest fears of people living with UC. With any chronic medical condition young folks are diagnosed with, it’s a sense of loss of control. Nobody deserves to be sick at any age, but especially when you’re young, right? You’re going to college, doing all these other different things; you shouldn’t have to worry about this kind of stuff. I think patients are concerned about, first, I have a chronic problem. Second, Am I going to have to take medicine all the time? Third, Is this medicine going to give me side effects? Fourth, and a reality in America, Is this going to cost me a lot of money? Fifth, I’m going to miss work or miss time with my family and my friends. And I think the biggest concern is related to long-term issues. Am I going to need a colon resection? Will I need to get a colostomy bag? Am I going to get colon cancer? Is this going to shorten my life? …discussing things outside of general disease management. Reproductive health is an important issue to address, particularly for women who are diagnosed in their younger reproductive years. The voluntary childless rate in women with IBD is several fold higher than the average population. Most of the time, it’s because they’re worried about passing it on to their child, or flaring during pregnancy. Like with this appointment I’ve been talking about, I spent most of the time just making sure the patient understood what the diagnosis was. If I had two hours, I could have gone through a lot more stuff. But unfortunately, in our modern healthcare system, I was trying to make sure I was getting the most important information at that moment, in my mind, to the patient. Part of the thing is, we’re not trained for this stuff. So much of our training is spent scoping and understanding the pathophysiology of these diseases, we don’t have that sort of holistic approach to making sure we address all of these issues, a lot of which lie outside of the disease itself. …advocating for yourself in the GI’s office. It’s very important. I joke around with my family and say, “Who cares about me and you? Me and you.” I feel that an educated patient is going to get a lot better care because they’re going to ask the important questions. I know I’m imperfect, because I’m human, and so I might miss something. If the patient points out a potential complication, or if they aren’t understanding the data, and they say something, we can have that conversation. I would much rather have that conversation with the patient and find the best approach for them, because they’re also invested in their own disease. There are a lot of great places that have wonderful patient-facing websites, as well as social influencers that have podcasts and blog sites with their experiences. You have to be careful that you’re going to reputable sites. It’s a lot harder to unteach something that’s wrong. …earning the trust of the people he treats. I would say my ideal encounter would be both of us in the room, feeling at ease. They trust me, I trust them. I want the patient to be able to be completely honest with me about fears, concerns, or if they think I’m a doofus. Tell me! The visit can only be good if I’m listening and hearing them properly. But also if they’re doing the same to me, right? We’ve seen these studies where they’ll have a patient-doctor interaction occur, and then they interview the patient and doctor separately after. You’d be amazed at how disconnected the views are; one thinks they explained things clearly, but the other says they didn’t address it at all. I want the patient to be happy with me and tell me if they disagree with what I’m saying or are having negative views of what I’m suggesting. But I have to earn their trust. I don’t expect to walk in there with a blank slate and expect them to trust me just because I’m a doctor. I need to have that interaction and build that rapport with them. …optimizing a 30-minute appointment. You might notice that we spend a lot of time just extracting information, right? When the patient has thought about their symptoms and jots down patterns or symptoms ahead of time, that helps a lot with data extraction. There are cool symptom trackers out there you can use. Or keep a summary of every scope, biopsy, different medical therapies and when you stopped and started them. What was the result? Why did you stop? That level of detail keeps me from spending the majority of the visit asking for this information; now we can just catch up during the appointment. All my visits are 30 minutes, so if questions are prepared ahead of time, we can address that one thing you came to see me for that day. …why “stool is cool.” I say, “We’re not at the dining table right now. It’s me and you.” My wife is an infectious disease doctor, so she takes care of HIV and now COVID all the time. It doesn’t even faze her to ask, “Do you have sex with men? Women? Both? Do you have an STD?” It’s not a judgmental thing; it’s just a question to help. It’s the same thing with UC. I try to use a little bit of levity, if I think it’s appropriate. One line is “stool is cool.” But if I don’t feel it’s appropriate, I won’t. Regardless, I want patients to be comfortable telling me, “I get some fecal leakage every now and then.” Because that’s important to know. That’s a really important part of the quality of life for the patient. I want to adjust things to help minimize those types of symptoms for them. …questions he wants people living with UC to ask their GI. I wish they would ask me, a very open-ended question: What can I do for myself? What can I do to support myself? Because the patient is the one who has the most skin in the game, right? They’re the ones living with UC on all these different levels, right? Financial, emotional, physical–you name it. That’s not to say the onus is completely on you, but if it’s not getting across to me that this is your biggest concern, and I’m over here focusing on something else, you need to reel me in. The other thing I would say is, I want patients to ask me about the most important thing to them, whatever that may be. I hope that I make them feel comfortable enough to do that. …creating hope with newly diagnosed people. First, I’d say the vast majority of patients do well with UC, and we can control the symptoms to give them a good quality of life. I’m not minimizing the struggles that so many of our patients go through, but the majority of my patients do well. So I like to, not falsely but realistically, reassure the patient that, for the most part, we can make you feel good in life. When I started practicing in 1999, the data showed a much higher risk of colon cancer. However, that data was skewed because it was from tertiary referral centers that saw the sickest of the sick. When they did a wider view of the true patient population, that lifetime risk, although still higher than the general population, dropped substantially. That doesn’t mean we blow anything off, but I like to tell them that we can control this and they are not destined for colon cancer, if we take good care of you. Now, that doesn’t mean it’s a guarantee; this disease has a vast spectrum. But for the overwhelming majority of patients with UC, they do well. Note: This interview was edited for clarity and length. Learn more here.  

I was diagnosed with Crohn’s disease when I was 9. I have spent my life jumping from treatment to treatment and learning how to overcome the shame that accompanies inflammatory bowel disease (IBD) symptoms. Sometimes, even though they usually have good intentions, friends of mine (or strangers) will ask me offensive or inappropriate questions about my Crohn’s. For everyone else out there with Crohn’s – this is for you to know you are not alone in this frustration. And for my friends and future strangers: tuck this away for reference. Here are eight things you should never say to someone with Crohn’s (and eight things you can say instead): 1. “ My cousin’s friend has Crohn’s and went on X diet or Y medication. You should try it; I’m sure it will work for you.” Alix taking her medication What it means to me : You have the best intentions and you are trying to help but you don’t know anything about my medical history or my current diet regimen. You don’t understand how offensive it is to give treatment advice when you are not my doctor. What you should say instead : My cousin’s friend has Crohn’s and finally found a diet-based treatment that worked for him/her. I know how hard it is to find something that works. I’m here if you want to vent. 2. “My aunt had ulcerative colitis, too.” What it means to me : Either your aunt is dead or dealt with a different non-chronic illness but regardless, it shows you haven’t done your research. Because ulcerative colitis and Crohn’s are lifelong illnesses, it feels awful to hear you brush them off as something that can be cured. What you should say instead : My aunt also has ulcerative colitis. (Or, in the case that she has passed away: My aunt also had ulcerative colitis. She passed away X years ago.) It’s an awful disease. I’m sorry. 3. “You can’t eat gluten, lactose or eggs? I totally understand. I’m a vegan and it’s so hard to find food sometimes.” My breakfast of gluten-free waffles What it means to me : My disease-based food restriction is equal in your mind to your lifestyle choice-based food restriction, which it is not. As nice as it is to try to sympathize with someone else’s food restrictions, it is beyond frustrating when someone who chose a lifestyle diet change tries to equate it with your disease taking all the foods you love away from you. What you should say instead : You can’t eat gluten, lactose or eggs? I don’t eat dairy or eggs either because I’m a vegan, but I can’t imagine not being able to choose what to eat. It must be really hard. 4. “ You get such-and-such accommodation? You’re so lucky!” What it means to me : You have no concept of how hard it is to have a chronic illness when you would trade in being healthy and not having early registration for classes or a handicapped parking pass for having a crippling lifelong illness and these tiny accommodations. No, I am not lucky that I get to register a week early for classes at college. I am unlucky that I have a crappy disease (literally) that forces me to adjust my class schedule around my Crohn’s. The worst thing is when people say I’m lucky I am so thin. As fabulous as I may look, the reason I am so thin when flaring is because I can’t keep food in my body for more than 15 minutes. Not so fabulous, is it? What you should say instead : You have a handicapped parking pass/early registration for class? You deserve it. I know it’s a small consolation for all you have to go through on a daily basis, but I’m glad these small things can provide a little relief. 5. “ I don’t get it. Just come with us to the concert and see if you like it. How do you know you don’t want to go until you get there? How can you not like concerts?!” What it means to me : You have never experienced the panic of not knowing where the closest bathroom is. You have never been so tired that all you want to do is sleep. And you have never felt guilty about letting down your friends (and yourself) because you needed to stay in bed. What you should say instead : It’s up to how you’re feeling. If you don’t end up going, I’ll text you videos and tell you all about it tomorrow morning so you don’t feel like you missed anything. 6. “ You’re in a flare? I had food poisoning last month and it was the worst. There’s nothing worse than one day of food poisoning.” What it means to me : I have failed as a friend if you don’t understand how severe my illness is. My flares are months and months of food poisoning. There is most likely nothing in your life that you can even try to compare with my flares. So just don’t try. What you should say instead : I had food poisoning last month and I felt awful. I can’t imagine how hard it would be to go through that every day. If there’s anything I can bring you, like soup or a good book, let me know. 7. “ Your last flare was like a year ago, though, right? So you don’t have to worry about flaring right now.” What it means to me : You haven’t done your research and I haven’t educated you enough. Flares are unpredictable, which means they can come anytime, for no reason at all. Just because I haven’t had a flare in a year doesn’t mean I can’t start one tomorrow. And just because I am just getting out of a flare doesn’t mean I’m magically safe from having another one for a certain amount of time. What you should say instead : I know you’re scared of flaring during your move to the city. There’s no way to know if you’re going to flare so all you can do is continue your treatment and try not to stress. I’ll be there helping you move in. 8. “ It could be worse! At least you’re able to do such-and-such things. I have a friend who has it much worse.” In my “favorite room of the house.” What it means to me : You just don’t get it, do you? Of course it could be worse. But when I’m sitting in the bathroom shaking and crying, losing ounces of blood at a time, it doesn’t make me feel better to know it could be worse. What you should say instead : This sucks so hard and I want you to know you’re allowed to cry and feel hopeless. I love you and I’m here for you.   This post originally appeared on ChronicBabe.com.

I hope this post doesn’t come off bitter or scathing, but I am so tired of people’s judgmental and malicious comments, especially when they assume you must look a certain way for sickness validation and support from your friends and family. I have enough to deal with, as do many others — why must I also deal with disease ignorance, like people saying I am “faking” my illness based on my makeup? Why do I need to look “bad” and feel bad, too? And what does that even mean? I don’t “look” sick enough? What am I supposed to look like? What am I supposed to look like to help you believe I hurt? How am I supposed to look to help you believe I am in constant pain, even with a smiling face? I’m sorry I don’t look sick to you, so why don’t I start posting pictures of all my fun toilet contents? I’m sure that’ll clear up some of your doubts. Just because I don’t always look sick and I put on a happy face doesn’t mean I’m not sick and struggling. Of course, I’m going to share my cute photos. Don’t you? I’m sorry I don’t post enough selfies or images from my illness, but you can’t blame me for posting photos of myself that I like. I am rarely seen with a face full of makeup, so I’m going to share those images for the world to see… You think of all things to fake that I really wanted to fake bowel disease and to be forced to discuss bowel movements for the rest of my life? No. Thank. You. I don’t look sick? 1. I can look “good” on the outside and feel bad on the inside. Of course the photos I share are “good” photos… I’m not going to share pictures of me puking or shitting blood now, am I? I can look pretty and still feel pain and be sick. 2. How do you know what I, or others, struggle with daily? Other than the info I share online through my social media posts or blog. And if we rarely talk, you can’t assume to know all about my life, my battle, my journey with this invisible illness. You think you know me, my pain level, my feelings, but you know nothing. Be glad you can’t relate. Be glad you don’t understand what I go through daily. 3. If I want to do my face and hair every single day, I will. If I want to shamelessly share my “good day” selfies because I’m feeling myself, I will. If I want to waste a day’s worth of makeup to sit at home, in pain, in and out of the bathroom, and never leaving pajamas, I will. You should know I do my face once a week, if that. Why do I have to feel bad internally and look “bad” externally, too? Why is my makeup a representation of my pain level for you? Photo via It Could Be Worse. 4. Crohn’s and other bowel diseases are not something that can be faked, so if I’m feeling like doing my face, know I’m not miraculously cured. If you think I don’t look sick enough, you need to rethink and examine why exactly you think every doctor I have seen is wrong, why every pill capsule I have had has shown Crohn’s disease, and why I am using dangerous biological drugs, because, you know, they give those out to everyone. And I guess that’s why it took two years for a final diagnosis… because the doctors love a scavenger hunt for symptoms like my pain that you claim aren’t real. 5. And finally, let me see your doctorate for gastrointestinal diseases, since you know what someone with an invisible illness like Crohn’s should look like. Why is my smile on the outside a representation of my pain level I am struggling with on the inside? Why do you question it when what we invisible illness warriors really need is support and belief that when we say we feel bad, we feel bad, regardless of attire, makeup, smiles, or happy personalities. I’m struggling to find the silver lining, so don’t question my outside appearance when you have no idea what I deal with on my insides. We want to hear your story. Become a Mighty contributor here .