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inflammatory bowel disease awareness day - 19th may

This is written from the perspective of only one patient; I am not representative of all IBD sufferers and I am not a doctor; if you want to know more, I encourage you to do your own research and contact your doctor!

Today is International Inflammatory Bowel Disease Awareness Day and I kind of wanted to contribute a bit to this topic as it has also affected my life, especially recently.

ava's blog
(The IBD flower. Graphic created by my good friend Mimi.)

Since having had to dive deeper into it all due to my own diagnosis and living with the disease, it's been obvious a lot of people don't know about IBD or have a lot of misconceptions about it. And understandably so - there is no cure yet, we don't know exactly what causes it, and there is always a lot to be gained by bad actors from spreading misinformation for profit or other bad motives about diseases like that, since their claims sound good and can not always be easily disproven either. But there are some important things to keep in mind when you interact with people who have IBD that I think would be helpful to know for outsiders!

There is a difference between IBD and IBS

This is also something I didn't know until recently. IBD stands for Inflammatory Bowel Disease, IBS stands for Irritable Bowel Syndrome. They can overlap in symptoms - abdominal discomfort, diarrhea, mucus, being bloated, constipation, etc. - but while IBD features visible and/or detectable autoimmune inflammation in the digestive tract (via stool or gut tissue samples, colonoscopy/endoscopy, like visible ulcers and swelling etc.), IBS has no detectable inflammation and is a collection of symptoms. Due to the present inflammation and wounds, IBD sufferers often also deal with blood in the stool, strictures, scar tissue in the colon or intestine, fistulas, and signs of the inflammation outside of the digestive tract, like skin rashes, skin tags, hemorrhoids, joint pain, mouth ulcers, fatigue, migraines and more. Due to the proposed connection between gut health and mental health plus the obvious drain of having to deal with these symptoms, there's usually also depression, anxiety, loss of libido and more.

But it doesn't mean you can only have one - some people are diagnosed with both IBD and IBS.

It's important to know that IBD is a group name for illnesses such as Crohn's Disease and Ulcerative Colitis. While the latter is usually more likely to be in the latter part of the colon, Crohn's disease can affect any area of the digestive tract from mouth to anus. There are more than that though, like the lesser known Microscopic Colitis.

Symptoms can come and go and vary in intensity - even with treatment

It's important to be patient with the person in your life who has IBD - some weeks are great, while others can be pretty low energy. It is impossible to predict when symptoms will return or leave and it is mostly out of our hands. We might have to cancel pretty shortly beforehand because of sudden bowel emergencies or other unforeseen complications and fatigue. Not all people who have a working longterm treatment for their illness are completely symptom free, some people's treatment just affords them a lighter version of their usual symptoms. That means your friend, even while on medication, might still have issues around bowel movements, specific foods, stressful situations and more that they have to consider when traveling, swimming or going to that barbecue. They also might be dealing with some heavy side effects from the medication they have to take for it.

It can be difficult to get a diagnosis and can take years

Because the symptoms can vary so much from person to person and time to time and can seemingly be partially managed with lifestyle changes (or ease of symptoms simply happen to coincide with changes and we draw a false connection), it can be hard to pinpoint where they come from.

I for example have always struggled with skin rashes, occasional digestive issues, and mostly joint pain and swollen wrists. I've had heightened inflammation markers in my blood since I was 12 years old with no doctor finding out why all this time. It was usually blamed on allergies or food sensitivities since I had some, and I was at the rheumatologist a lot because my mother has rheumatoid arthritis, so it would have made sense for me to develop it as well - but everything was always negative and it didn't fully fit the typical presentation. I've also struggled with PCOS, which means I get ovarian cysts, and I possibly also have endometriosis (undiagnosed still). So recurring abdominal pain, especially one sided every now and then, was easy to mistake for uterus issues caused by the menstrual cycle, instead of an inflammation in the ileocecal valve where the small intestine and colon meet. The symptoms fit other existing diagnoses or seemingly more likely or easier diagnoses, and no one thought to check the colon of someone so young. So misdiagnosis or not being able to be diagnosed at all is an issue; other people also struggle with getting appointments at all, affording the visits and tests needed, or get dismissed by just being told to take pain medication and reduce stress or just stop eating xyz foods.

It is a lifelong disease without a cure (for now)

When people find out about my diagnosis, their first instinct is to think that I will just temporarily take some medication or gut bacteria kit and get better, and fully recover, similar to a course of antibiotics. That is sadly not the case. People like me will most likely rely on medication for life. Some people have a mild presentation and decided with their doctors to only take medication during an active flare, which happens rarely for them and is at worst annoying to deal with. But many have a moderate to severe presentation that needs longterm, constant treatment without breaks, as getting off of the medication can instantly trigger another flare, which in their case can be debilitating, causing hospitalization and maybe even be life-threatening. I personally have a steroid-dependent, moderate disease activity - if I stop or lower my steroids, I relapse, and I need working permanent treatment before I can stop steroids.

Leaving IBD untreated can cause a lot of issues, especially since the disease is progressive and will likely get worse as time goes on. Mild cases will likely not stay mild all their life. Risks of leaving it untreated include (but aren't limited to) malnutrition and osteoporosis, polyps, bowel cancer, complete blockages, bowel perforations, anemia and blood loss, sepsis, fistulas (and their effects when for example connecting to the bladder and causing you to excrete waste through it) and dehydration. While the beginnings of the disease might be treated by lifestyle changes, it will at one point need to be medicated.

Yes, it is a disability

IBD regularly qualifies for (varying degrees of) disability in most countries, if the patient chooses to apply. It's one of the invisible disabilities. I think this is important to mention because yes, that can mean people with "just bowel issues" can park in handicapped spots, use the bigger toilet stall and dressing rooms, get the handicapped seats in the trains, get cheaper entry to stuff, get disability benefits and accessibility adjustments at work, school, and university, despite being able to walk just fine. And it's not anyone else's place to judge or police that. People don't need wheelchairs or canes or a visible amputation to be physically disabled.

Treatment can be risky, time consuming, hard to attain, expensive, and medication can stop working

There are several treatment options available, but all come with side effects and risks. The common first line treatment options are steroids (like prednisone or budesonide) or anti-inflammatory medication like mesalazine for an active flare, especially in the intial stages of getting diagnosed, and immunosuppressing therapies. That means pills like azathioprine, methotrexate, upadacitinib or mercaptopurine, or so called biologics like adalimumab, ustekinumab, infliximab, vedolizumab and others (usually referred to by their brand names like Entyvio, Remicade, Humira, Stelara etc.). They are usually administered by infusion or an auto-injector pen every few weeks.

Not all treatment options have the same side effects or risks, but known ones for many include nausea, vomiting, headaches, fatigue, acne, hair loss, mania and depression, weight gain, brain fog and memory issues, increased sun sensitivity, bone marrow depression, pancreatitis, liver damage, menstruation effects, increase of specific cancer risks (skin cancer, lymphoma, ...), harm to the fetus, miscarriage, and being more susceptible to infections and therefore pneumonia, a UTI, fungi etc.

That can be scary of course, which is why treatment can be a touchy subject for many and as an outsider, it is best not to assume that the person taking it or considering to is making these decisions lightly. It can be difficult for the diagnosed person to be dealing with the fear of side effects and consequences of longterm use, while the people around them either try to stop them from taking it due to fear or insist that it is not so bad and just like popping some Ibuprofen. In the end, you have to choose between the longterm risks of being untreated vs. being treated, and neither path is completely risk-free. Spaces for IBD sufferers, like the IBD subreddit or Discord server, are often full of people asking if they really need medication, and tips on how to treat it with just foods or supplements alone; they're desperate for anything else other than pharmaceutical drugs. That should tell you a lot about the difficult choices you have to make with the disease sometimes, and coming to terms with your realistic options.

Another issue is that many of these medications are expensive, especially the biologics, so many people struggle to stay on it for financial reasons or struggle to get it covered by insurance. Many insurances make you go through several different treatments first to "fail" before approving a biologic, and many of these treatments can take months to work, so finding your ideal treatment can take a long while if you are unlucky. Many doctors prefer to start with the easier or cheaper options too and gradually up doses or frequencies before trying new things, so you can be stuck with awful symptoms for months or years before getting the right treatment.

An additional extra burden around treatment are the many blood tests, stool samples and other controlling mechanisms to see if the treatment (still) works, and if a biologic is used, scheduling the infusions in hospital infusion centers or arranging the pickup and storage of the pens. Traveling with the pens can also be difficult to plan, or how to get your infusion in a different country.

Even after finding treatment that works, you can develop an allergic reaction to it or your body can build antibodies to it, so it stops working as well. The antibody and allergy issues seem to happen more with biologics that are not humanized, so based on animals or at least chimeric (human and animal based). This can happen quickly, or even after multiple years on it. There are people happily on the same medication for 10-20 years, but there are also many people that have to switch drugs every couple years, sadly. This poses a real risk of running out of options for some people.

This leaves surgeries as the next treatment. That can mean a resection, in which parts of the colon or intestine are removed because they are not healing or are at high risk of causing a blockage. Other options are an ileostomy or a colostomy. The ileostomy attaches part of the small intestine to an opening in the abdominal wall, a colostomy reroutes the large intestine to an external opening. This usually means the person has a stoma, an opening on the stomach, and secretes the waste into a bag. That can be temporary to give the other parts that follow after the stoma a rest for a while, or permanent. Another option is the so called J-Pouch, in which the small intestine is attached directly to your anus, so you don't have a colon or rectum anymore (full colectomy), but also no stoma. This is often preferred because it removes the hassle of having to exchange a bag on your stomach, and enables you to poop semi-normally.

There is likely not one single cause

So why is all of that happening? There is no clear theory as to why. Leading countries with IBD diagnoses are Australia, the US, and countries in Northern Europe, and there have been studies that show IBD diagnoses rising in non-western countries after more western food or western lifestyle was adopted - which means a more sedentary lifestyle with more fat, sugar, lactose and red meat usually. Similarly, families started to have an increase in IBD diagnoses after immigrating into western countries from countries such as India. But it might not be so clear cut, since people in poorer countries might just go undiagnosed more often for a variety of reasons (poverty, lack of skilled doctors, lack of access to healthcare).

Of course, there are also theories that the cause could be related pollution like microplastics, PFAS, pesticides or exhaust fumes, as well as stress and genetics, longterm effects of viral infections like Covid (especially relating to how they can mess with your vagus nerve), and antibiotics treatments. A really interesting theory that exists is that a genetic change related to surviving the black plague is related to it.

Because we don't know the cause yet, developing treatments or perhaps even a cure is difficult, and it's also why some treatments work perfectly for some while others don't. The mentioned biologics target different specific immune system pathways (for example, TNF-alpha, MAdCAM2, Interleukin 12) and seeing as none of them work for every case of IBD, it's another proof that different reasons and causes seem to be at the bottom of it.

The person with IBD in your life did not make themselves sick

Something a lot of IBD sufferers struggle with is their surroundings becoming medical experts suddenly and trying to find easy and plausible sounding reasons for why this problem exists. Of course they wanna reassure the diagnosed person, but also usually themselves. It's scary to be confronted with people who become chronically ill, seemingly out of nowhere, and now have the choice between illness or relying on medication that can be pretty severe and costly. You don't wanna think about how that could be you one day, and that there is nothing you can do about it. So it's nicer to tell yourself and others that there are easy things to do to avoid this fate, or to somehow reverse it and treat it with natural or less invasive remedies. It's also more reassuring for the other people to blame something the IBD sufferer did for it because then they can feel safe knowing they would never do that or would just do xyz and be rid of the illness. That gives them a sense of control over when and how they could get sick, even if that's not true at all. If this was an option, all IBD patients would just do that.

Once you meet enough IBD patients, you will see that the situations are so diverse and often even polar opposites that there cannot be a cure-all or something easy to do or avoid - there are all kinds of ages, lifestyles, family histories and life events attached. People who live a super active, healthy lifestyle with no family history and a happy childhood still got it. There are people who are very sedentary, live off of fries and energy drinks and endured childhood abuse, who do not have an autoimmune disease and may not ever get one. There are babies and toddlers with IBD who have not had the chance to make any sort of "lifestyle mistake" to trigger it, too.

In general, people who have IBD of course want to find out why, especially directly after the diagnosis. Why me, why now, why like this? Is there anything I did to cause this? Is there anything I can do to lessen my disease still? So you will likely not introduce any new questions or possible answers, but there is simply no real answer and even if there was, it is too late. That means your theories around why this happened can come across as victim-blaming, or as if the person somehow deserved it, or is now simply reaping the consequences of their behavior. I think most well-adjusted, respectful people would not even do this when their lifelong smoker friend is diagnosed with lung cancer, so keeping a similar stance around IBD and keeping things to yourself should be normalized there as well.

You have to consider the fact that the person you're talking to has likely already pooped an amount of blood that would scare a healthy person to death or has dealt with shitting themselves in public multiple times, and if that happening to them doesn't convince them of anything you are trying to bring up, your speeches also won't.

Dietary advice is usually disrespectful - or plain wrong

Because it is a disease affecting digestion and food and diet is a huge part of our culture and the center of a lot of debates around health, that lends itself to an explosive combo. The field of nutrition is so diverse and there is still so much we are learning and so much we don't know. Each year, there are seemingly new contradicting studies about foods and nutrients. The same goes for gut health and gut bacteria. And as seen above as to the possible debated causes for IBD, food (western diet) is one being considered.

When interacting with people who have IBD, many will usually tell you about foods they avoid because they identified them as a so called trigger food. That means eating them can cause them temporary severe bowel issues that day or trigger a flare episode (which can last weeks to months). The idea of trigger foods in IBD is a bit controversial - there are doctors who seem convinced that it can be managed through diet alone (which is false, or at least only the case for very mild IBD, or possibly IBS) but also many who do not believe in the existence of trigger foods and think the reaction is random or psychosomatic. We might experience stress or other factors leading to symptoms while eating a specific food and accidentally blame it on the food.

If you talk to IBD sufferers though, many have tried their trigger foods out many times and it seems to be a very consistent issue for them, for some they even have to avoid some foods while on working medication; but there are also many where diet has zero effect on their symptoms. That means unmedicated, they suffered no matter what they ate, and medicated, they have to pay no attention to what they eat at all since the medication takes care of it all.

Now here's the difficult part; there seems to be some overlap in stuff many IBD sufferers say they get triggered by - like struggling with lactose, meat, chocolate, caffeine, tomato, and other high histamine/ripe/fermented food, sugar, and sugar replacements (think Aspartame, Stevia, Erythritol etc.). These are all also the foods I have had to avoid or reduce. But there are also some patients who do completely fine with these, or where avoiding these doesn't change anything.

Personally, going vegan years ago and stopping to eat chocolate because of bad reactions in 2017 has likely postponed my diagnosis accidentally because it made my symptoms go away for a long while; if had continued, maybe I would have gotten worse sooner and gotten diagnosed earlier. But there are IBD sufferers who do worse on a vegan diet, and who swear by a carnivore diet; others who find relief in a keto diet or a low fiber diet. The latter is actually recommended especially during a flare so your bowel movements are small and there is less risk of an obstruction in the swollen parts. Outside of a flare, I do perfectly fine with legumes, but it triggers other IBD people.

This is all just to say - diet and triggers, and the existence of them, is very individual and personalized, and there is likely no dietary advice you can give your IBD friend that doesn't sound ridiculous, simplistic or like a scam. They've likely tried it and heard it all before, too. It's also not a longterm solution to do any kind of fasting; that brings some short term relief at best, but people have to eat.

All these influencers online claiming to have cured it with diet are exactly that - advertisers and using it to make money selling books, courses, and supplements. They are not trustful sources and they act as if being in remission by accident is a cure, which it isn't. It could change any day and then their miracle cures will not help. I also get the feeling they lie about not being on medication sometimes. If it was really that simple, everyone would do it.

The same goes for some gut bacteria supplements that are even more scammy sounding! The issue around these things is not even knowing if what's advertised is in there, getting the bacteria through the stomach acid, alive, into the right areas, and then eating a diet that will allow them to populate the gut; and we don't even have evidence that IBD is caused by a gut microbiome imbalance always. Either way, better look into more effective scientific methods like stool transplants and so-called "crapsules", instead of unregulated supplements.

I look at guides around anti-inflammatory diets and the FODMAP diet and still see a lot of foods I react badly to on those lists on what to eat. If it was really working that well for IBD consistently and if all of these foods are somehow really inherently bad or good, this wouldn't be the case and I would be able to tolerate them. And others get to eat all these foods and will never be sick with IBD.

All of this is complicated by the fact that many people feel like they only need to avoid specific foods /during/ a flare and are otherwise free to eat it - so what they can and can't eat can change depending on their current symptoms situation. This can make the IBD person seem fussy, difficult, and inconsistent but it's true - just believe them when they say they can or can't eat that right now. And don't be an ass when they indulge in their trigger food sometimes; we need food for the soul sometimes too, and you know how hard it can be to consistently abstain from chocolate... we calculate the risks, and sometimes it is totally worth it.

Lastly, I wanna add that getting into the world of IBD patients and their diets makes you realize that healthy food looks different for everyone. The fancy Pinterest fruit and smoothie bowls or fried vegetable pans look like the definition of healthy, but the fruits would really mess me up right now in my current symptoms situation because of all the sugar. What I have been eating during this worst flare so far is a ton of rice cakes, blank or slightly seasoned rice, rice pudding, neutral sugar-free vegan skyr, peeled cucumbers, zwieback, potatoes, mostly unsweetened pancakes, coconut cream, plain soy milk and tofu. I've only been able to branch out again very recently. That's not a colorful, fancy, diverse and nutritious diet, but that's what's healthy for me at times. So don't judge when you see your IBD friend living off of saltines and blank pasta for a while, it might be necessary.

It's best not to comment on their body

This disease and related medications can be really rough on the body, and the mental effects also affect your satiety or willingness to eat food as well. There can be malnourishment and being very skinny because you are so scared of eating and experiencing pain, or because anything you eat keeps getting ejected or not absorbed because of scar tissue in the gut. You might lose a ton of weight during a flare or related hospital stay because you're relying on intravenous nutrition mostly and lose muscle too.

There can be a lot of overeating during better phases or the beginning of a working treatment because your body makes up for the time when it had to starve, so you gain a lot of weight quickly and enjoy foods you couldn't have. Prednisone especially is known to cause a lot of hunger and weight gain, especially around the face (so called moon face, very chubby cheeks). It goes away when you go off of it, but you need to taper it and some people sadly need to take it for months at a time. Some people gain or lose weight so quickly, there is loose skin or fresh stretch marks. It causes a lot of insecurities and worries about looking sick, looking unattractive, or looking lazy, distorted and weird. Many people develop chest, back or face acne on their medications. Other people have to get used to having a stoma and a visible pouch on their stomach where the bag is.

I think the general advice applies here that when you see someone gain or lose weight or have some changes on their body, it can be illness related and commenting on it can cause a lot of pain, even if it is supposedly positive, like praising them for their skinny body, or saying the new weight suits them well. There's also the rule of not pointing something out that they can't change in a few minutes, which is a good rule to have - there is nothing people can do right now about their moon face or acne. I've had the same people who praised my figure before the diagnosis go on to find out about it and suddenly tell me to eat more and gain weight. It's just ridiculous, don't do it.

Be honest, upfront, and cautious about being sick

Because most IBD patients are on some form of immunosuppressant, it's important to be mindful of that and keep your distance (or tell them to keep their distance/mask up/stay away) if you were recently sick, are currently sick, or had contact with a sick person. I can't believe we still have to say that after the Covid pandemic, but I almost feel like that has made people even more selfish and secretive about being sick because they have a fear of missing out and being told to stay away.

It's not your place to decide whether this is truly risky or important to know or not; you don't know the immune status of the other person and how badly they will react to even just a cold that you think was mild. Contracting something can mean having to temporarily stop treatment and risk another flare just to give the immune system a better shot at whatever infection is happening. Small infections can drag out for weeks and become severe when immunocompromised. You are not helping or somehow hardening or improving the immune system of your friend with IBD by introducing them to the current flu strain or norovirus. They cannot make up for their immune suppression with a little vitamin C, zinc and bed rest. The immune suppression is actually also an issue around vaccine efficiency and the ability to get live vaccines, so keep that in mind also when considering how unprotected your friend might be.

The illness doesn't exist in a vacuum

Many IBD patients have multiple other diseases, even other autoimmune diseases. They can affect each other and make things worse or coincide in symptoms. When one flares up, the other might, too. Your IBD friend might react more sensitively to certain things like stress because of it all. Natural recurring bodily functions like the menstrual cycle can negatively affect or be negatively affected by IBD, so if that is the case, be understanding that there is a regular time each month that is particularly hard.

It can be isolating

Finally, this disease can be isolating or cause the people diagnosed with it to withdraw. It's overwhelming to deal with in bad times. You might need a toilet close by at all times, so going outside becomes difficult and you are scared of having accidents or your stoma leaking. You might not be able to order anything at the restaurant or cafe, so why go out. You feel like a burden to your partner, family and friends. You are scared of traveling because of the food and toilet situation, or because you don't know how to coordinate the infusions or pen transport to allow for travel. You don't know if traveling will cause stress and trigger a flare. Flares, surgery recoveries and hospital stays are making you cancel plans, drop out of school or university, or make you lose your job. You might miss out on events and hangouts because of all your doctors appointments. You feel fatigued and tired, so you stop showing up to your hobbies outside of the home. You don't wanna argue with people about food or why you brought your own, so you don't attend the office barbecue. When they bring cakes to the office or order pizza, you don't get anything. With the weight loss or gain, hair loss and/or muscle loss, you lose confidence in your looks and your clothes stop fitting, so you are uncomfortable with being seen outside and stay home. You might not wanna date because you don't know how to introduce having this illness and don't think anyone would find this, and possibly your stoma if you have one, attractive. You don't wanna be touched, hugged or kissed because you are in too much pain. You may choose not to attend that festival, that concert, that family function because you don't wanna catch an infection and be down with a cold for a month. You're irritable and depressed due to the illness or the Prednisone, so you rage more, argue with other people and it causes issues in your relationships.

All that can be a reality, so it's important to be patient and supportive of the people with IBD in your life.

Final word

Thank you for reading this far! I hope I was able to give you a glimpse into the world of Inflammatory Bowel Disease. I encourage you to take your health seriously - please go to your checkups, request tests, don't just accept stomach pain, blood on the toilet paper or anything that seems off. You deserve to know! Ask for that colonoscopy. It could save you a lot of trouble.

ava's blog
(The IBD purple ribbon. Graphic created by my good friend Mimi.)