28: Finally Feel Seen and Heard: A Guide To Helping Loved Ones Understand IBD

Crohn's and Colitis can make you feel isolated, unseen, unheard and invalidated when others don't understand what you're going through... It's even harder when it's your friends and family.

This is a guide to help you finally be seen and heard by your loved ones, and it also serves as a guide for caregivers to understand what your loved one is going through.


TOPICS DISCUSSED:

• 8 of the biggest challenges IBD sufferers go through
• 8 things you can do to undertstand/be understood

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Transcript

Josh Dech:

Besides the extreme physical toll that Crohn's and colitis take on you, one of the hardest parts about having this disease is trying to communicate it to others, especially loved ones. And so I've connected with thousands of people just like you who are struggling with Crohn's and colitis, and I asked them two very important questions.

The first is: What are the biggest challenges with having IBD?
Second question I asked is: What have you found to be the most helpful thing when trying to get your loved ones to understand what you're going through?

So in this episode, I'm going to be sharing the answers to those two questions with you.

Contrary to what your doctors told you, Crohn's and Colitis are reversible. Now, I've helped hundreds of people reverse their bowel disease and I'm here to help you do it too, because inflammation always has a root cause—we just have to find it.

This is the Reversing Crohn and Colitis Naturally Podcast.

Now I do these live trainings in my Facebook group every single week and put the audios here for you to listen to. If you want to watch the video versions of these episodes, just click the link in the show notes to get access to our Facebook group and YouTube channel. And for weekly updates, information, tips, and tricks, you can sign up for our email list by clicking the link in the show notes below.

Now if you don't know me, my name is Josh Dech. I'm an IBD specialist, medical lecturer, and physician's consultant, and the scientific strategist and education director for the Root Cause for Crohn's and Colitis Organization. And today we're going to be discussing the challenges of having IBD and how you can best communicate what you're going through to your loved ones.

So I've got two lists in front of me here I'm going to be going through, because this isn't information I want to pull out the top of my head. This is information I want to take from you—from the community dealing with IBD. And so these questions that we're going to be diving into here today or getting the answers to—these are going to be directly from the source, which is you guys.

And so the first challenges that you're going to be facing dealing with IBD—we've got eight of them. And before I dive into that, I want to remind you: there's hope. This isn't a hopeless situation. We're going to give you answers here as well. But the top challenges that you've probably faced or will eventually face—we're going to go through these here bit by bit.

So the first one is what we're going to be seeing a lot of, is actually uncertainty. There's a lot of uncertainty and unpredictability around IBD. We're dealing with the anxiety of bathroom trips. Flares might come up and down. You don't know when urgency is going to hit, and so it's very unpredictable.

This disrupts your life in every way. It disrupts work, it disrupts social events, it disrupts relationships, errands, you know—going to your kid's soccer games. All those things become compromised when we're dealing with IBD.

I can't even tell you how many people I've spoken to—thousands in my career—and I can't tell you how many of them have lost jobs going through this type of stuff because there's uncertainty and unpredictability and issues with scheduling and consistency and being able to show up. So it's a big, big challenge.

The second one we see a lot of is the physical toll. IBD is a physical illness. It's inflammation of your digestive system, whether it's Crohn's or colitis. This comes with all kinds of symptoms which can be very debilitating and exhausting.

So the first one we're going to see a lot of is going to be pain. If you're dealing with this right now, you know. If you have a loved one dealing with this, you need to know that there's a lot of pain—beyond cramping, tearing, burning, aches, bleeding. It's as if you take the worst stomach flu you've had and multiply it by 100, and that’s your average flare. It's a lot to deal with and a huge physical toll.

This is paired with all kinds of other symptoms. We have a lot of fatigue. There's overwhelming amounts of exhaustion. It makes it very hard to function. And it's extremely difficult for parents with kids—I have many clients who are parents with kids—and it's hard to keep up. It's hard to keep up with the job, and the house, and lunches, and laundry, and all these different things to raise a family, which can be quite a lot.

And the next one, as well as a physical toll, is more symptoms. It's not just the digestive system, but because your gut is connected to everything inside of your body, those symptoms move outside of your gut as well. There's issues with nausea, you get vomiting, bloating, joint pain, hair loss, hormonal issues, menstrual issues, thyroid issues, anxiety, depression—the symptoms go on. Because the entire chemical composition of your body becomes altered for the worse, and it becomes highly toxic, and it feels like everything's breaking down.

So there are a lot of symptoms here. Give an example—there was a family I was working with that came to see me for the five-year-old boy who was dealing with really severe colitis. And it turns out it was a major mold infection. But not only was he sick with colitis—he’s five years old—he had trouble walking. He was limping around the house. He couldn’t go outside and play.

It really does take its toll. And because of the mold in the house, mom had issues, dad had issues, his two siblings had all kinds of problems they were dealing with. So bowel disease doesn’t just stay in the gut—it really does move around the entire body and cause problems everywhere.

The next major thing we tend to see is a large emotional impact. This is something that’s really hard to communicate and it’s not really recognized.

You have to understand that it’s not only comes with the chemistry of depression, anxiety, but there’s a lot of hopelessness. You wake up one day sick, and your doctor tells you, “You have this condition, this disease. There’s nothing you can do about it. You’re sick for the rest of your life and you’re on drugs forever, and that’s your only hope besides surgery.”

It’s hopeless. There’s a lot of fear, there’s isolation, fear of the future—“What am I going to look like? Am I going to have cancer? Am I going to be sick?” There’s all kinds of things that we worry about with the future of these diseases.

There’s a lot of embarrassment as well on the emotional side. Accidents are very common. For adults to be having accidents in public places—you’re stuck in traffic and can’t get to the bathroom on time. I’ve had clients who literally either wear diapers or bring buckets and put them in the car, and they use those in emergencies because it can be that severe. And it’s really difficult to communicate this to others.

You know, if you’re dealing with this or you have a loved one you're trying to communicate this to—it’s not easy. And people don’t really understand because it’s an invisible illness.

Give you an example—I was going through more forums to find this information for you guys today, and there was a story from a woman on Reddit, and she and her partner were having sex—and she had an accident.

Imagine the physical, emotional, the embarrassment—there’s risks of infections and all kinds of stuff. And it makes it very difficult to even have basic intimate relationships. And so it can be a very debilitating disease. And it’s something that you need to be aware of, and your loved ones need to know as well.

The next one we see a lot of is going to be dietary restrictions.

Diet can be very difficult for a lot of reasons—not just the loss of your love of food, but there's a lot of challenges. What's going to put me into a flare? We don’t know. What’s going to trigger me? I can eat this today, but tomorrow I can't, and now it’s causing upset. You eat something that should be healthy—but it makes you bleed. There’s no consistency, and it makes it very, very difficult to track food and diet.

I actually had a client of mine who had family dinners every single week. She’d get together with her extended family, cousins, and they’d go from Mexican restaurant to this Mexican restaurant every single week. And when her IBD started, she was no longer able to even partake in a regular family event.

So it’s not just isolated to food and being picky—it really does impact everything.

Now this is—we’re halfway through the big challenges. I’ve got eight for you guys today, and I want to get into what you can do and how you can communicate this to your loved ones, and how you can help them really understand what you're going through.

And if you’re someone who’s watching and you don’t have bowel disease but you have a loved one who does, we want to walk you through that as well—what you can do to begin understanding what they’re going through.

One of the challenges we see—another one, this is number five of eight—is a loss of freedom.

Imagine feeling like you're under house arrest. Like you’re chained to the bathroom. You can’t leave the house. I can’t tell you how many clients over the years who have been stuck in their house—they couldn’t leave, they couldn’t get around the block without having an accident, having to bring changes of clothes everywhere.

Or if you're leaving the house, you know you're fully aware you're going to have an accident and you just have to accept that reality. It's very, very difficult. It leads to isolation, again. There’s more embarrassment, there’s social stigmas, and all kinds of stuff that is related to this. And it’s a very difficult position to be in.

I don’t know if maybe it’s something you can relate to—if you've had loved ones who are older in your life, who maybe became senile and developed Alzheimer’s disease and lost their driver’s license. That’s very difficult—to be independent and lose that freedom. Because there’s so many struggles around it.

The next thing we see is a lot of struggles with healthcare.

And this is not only getting help in general, but the medical system, doctors even, don’t really understand this disease. It’s a very specialized practice, and so a lot of people go in and get dismissed. The doctors don’t understand—“Well, you look fine.”

You go in, you’re debilitated, you’re in pain, you’re exhausted, you can hardly get out of bed in the morning—and your doctor goes, “Well, your blood work’s fine. You’re fine. Go home. Here’s some antidepressants.”

Not kidding. I’ve seen it before. Bloody bowels. 15, 20, 30 bowel movements a day. And you’re getting antidepressants. Because if the tests don’t show anything, they don’t know what to do.

And it makes it very difficult to seek care because it is so extraordinarily specialized.

We had a woman who actually commented—we were doing our poll in the Facebook group—and she had a coworker at a hospital, and her coworker said, “Oh, this is what we’re calling IBS now.” No clue how severe bowel disease is.

IBS is a stubbed toe. Bowel disease—you shattered your leg.
It is a whole different ball game. And it’s important to understand that.

The seventh of eight that we see is going to be family dynamics. This is a big challenge.

Those going through IBD have to deal with family dynamics that are not easy.

You know, if you’re a parent with a child who has bowel disease, it is gut-wrenching. It’s heartbreaking. I’ve seen kids younger than two years old, all the way into their teens and those going through college—their education is disrupted, their sports, their freedom, their friendships.

Like this little boy I was telling you about who had so much mold in his body, he was so inflamed he couldn’t go outside to play because he had to limp around the house and just lay because he was so fatigued. We’ve seen this before.

And for parents watching their kids go through this—it’s a devastating situation.

On the flip side of that, there’s parents with IBD who have kids—and it’s hard to function and do parent stuff. It’s hard to go to the park. It’s hard to keep up on school and assignments and go with them and drive them to birthday parties and do social events because you’re so chained down to the house dealing with this.

And the last one that I want to talk to you about is social stigma.

There’s a lot of social stigma around bowel disease. There’s a lack of public awareness.

And forgive the terminology, but it’s not a sexy disease—like cancer, if I can say that publicly. You know, people know what cancer is. People understand cancer. Most of us—if you’re in a room with a thousand people—I’ll bet you 999 would put up their hand and say, “I know someone or a family member or friend who dealt with cancer.”

Now unfortunately, bowel disease—we’ve seen a 3,000% increase in the last 75 years. It’s doubled since the 90s. So it’s exponential.

The challenge that we’re seeing here is there’s still not enough awareness around it, even though it’s more prevalent. People don’t understand.

You know—giving an example—there was another woman I had spoke to recently who lost her job because her boss thought she was just in the bathroom playing games or texting on her phone, when in reality, she had to go because she’s dealing with bowel disease, urgency, and pain.

And sometimes it feels like there’s movement, but there’s nothing coming out. And it’s just—you’re doubled over, you’re sweating. I’ve had people I’ve heard of in tears because there’s so much pain.

And this is something that needs to be understood. And so it’s important to spread this awareness around this disease and what it actually is doing to someone’s body.

So those are the top eight things that we had actually found around the challenges that are faced most commonly in the IBD space and those dealing with it.

And so like I said, if you are a loved one of somebody who's dealing with bowel disease, or you have it yourself and you have a loved one who doesn't understand, you can show them this video or play this podcast episode for them, and it's a great way to help them understand truly what you're going through.

But this next section—I don’t want to just talk about what you’re going through. I want to give you some hands-on tools that we’ve found over thousands of people we’ve spoken to, to ask:

What are the ways you can communicate this and help people understand?

Yeah, this isn’t something I’m just pulling off the top of my head. This is something that I’ve asked the community, and this is what they’ve said from experience.

There’s also eight things here I’m going to be giving you, and it’s just a list of things that you can do to help them understand. Or again, if you’re a loved one with somebody going through bowel disease, I’m going to give you eight things that you can do to begin understanding and begin learning and supporting your loved one going through this.

So the first one that we want you to do—it’s important to clarify the nature of bowel disease, what it is, to help them understand.

It is a chronic illness. It is not just a stomach bug that passes and comes and goes. It’s a lifetime thing until you can get it under control or get the tools you need to begin managing or reversing it. It’s a chronic illness.

And explain the pathology. This means the disease process. What does it look like?

Show them pictures. I mean, it’s maybe a bit invasive if they don’t want to see—but to look at a healthy bowel versus an inflamed bowel on a colonoscopy, to understand there are sores and ulcers, to understand there can be holes and bleeding and all kinds of illnesses.

Like—picture a canker sore in your mouth all throughout your intestines. That can happen. And so it’s important to understand this, or to explain exactly what bowel disease is and what it’s doing inside of the body, to help give a frame of reference for what you’re going through.

The next one—and this one takes some bravery, I’ll tell you that much, because again there’s a lot of stigma and a lot of embarrassment around bowel disease—but it’s important to discuss it openly, at least with those you care about.

Beyond the understanding of, “Well, it’s just IBS,” or “I have bloat.” It is a debilitating condition.

And again—the first 10–12 minutes of this video can really explain what it is you’re going through if you don’t have the words to do it yourself. But it’s important to discuss openly what’s actually happening, and to talk about the symptoms, to talk about the life-altering changes that you’re just trying to keep up with and constantly adapting to.

And this can really help get some of that support.

The next one that people have found very helpful is to share the unpredictability of it.

That there is urgency. There’s complicated daily routines. You have to plan your life around bowel disease.

I’ve known people going on vacation who have to plan their trips or their road trips around where the bathrooms are going to be. Or they have to pick a seat and pay for a seat—believe it or not—to be next to the toilet.

Or if you’re onboard or the plane is landing and you’ve got 20 people in line—how do you get through in that narrow aisle?

So there’s a lot of planning, unpredictability, urgency, anxiety, and all kinds of stuff around it. So it’s important to share some of those extra needs that you may have, or to understand the needs of your loved ones.

The next one I want you to do is also to share another bit—not just the unpredictability—but share the emotional impact.

Share a personal story.
Maybe if you’re someone who got fired from your job for being in the bathroom so long, share that story.

If you’ve had accidents in public, and your loved ones don’t understand, share that story with them if you feel comfortable. To help them understand truly the extent of what it is that you’re going through.

It’s unexpected, it’s urgent, it’s unpredictable, it comes with depression, anxiety, isolation, lack of a social life, lack of intimacy, and all kinds of relationship challenges.

There’s a lot to it, and it can be hard to explain, and I hope this is beginning to help.

The next one that can help as well is to educate and explain.

Explain to them some of the complexities. Talk about medications.

“My doctor gave me drugs that are so powerful they suppress my immune system—like they would give to somebody with another chronic disease that we may see often, like ALS or MS or something else.”

It’s important to explain—“My doctor gave me options. It’s immunosuppressive powerful drugs, a lifetime of medication, steroids, injections, infusions, or surgery. It’s so bad, it’s so painful and so dangerous—my doctors even offered to remove my intestines.”

And sharing some of these complexities or possible future scenarios can sometimes help get this message across as well.

The next one that I want to put up here for you is going to be to emphasize the need for support.

If you are a parent with a child, or you're a friend or a spouse or a partner—it's important to understand that those dealing with bowel disease are going to need support.

There are many—there's a whole community right now—many people fighting, because it can be so debilitating. They are fighting to try to label Crohn’s and colitis as a disability. Because a lot of the time, it can require it.

Now, it is a spectrum. Some people are lucky to not have many symptoms. But most people are debilitated, and they're trying to label it as a disability.

And oftentimes there's a need for physical assistance—help going to the store and getting groceries, help sometimes with kids, or help cooking and cleaning. And sometimes, whatever you have to do to even take care of yourself—your energy can be so low, and your urgency so severe, you can hardly keep up with yourself.

Which leads to convenience foods, which end up hurting your gut even more—all kinds of stuff that can be very, very difficult.

The next one is to promote communication. And this is important.

Communication between you, communication between yourself if you're dealing with it, and the loved ones—or vice versa—and ask them to listen. Listen. Share resources.

You can share with them this video. We have this on YouTube. It's available on a podcast. Share the Facebook community, whatever resources you feel will help convey this message to what's really going on.

And share blogs—whatever it takes for them to truly understand and for you to be heard.

And it’s important as well to promote learning and education to the community, to others who don’t have this, and to explain the social challenges, the physical pain, the manifestation of disease, and what’s going on.

And then the last one—this is a really important one—it’s advocacy.

It is important to advocate for patience, for flexibility, from those who are indirectly or directly impacted by this disease.

If you're dealing with it, or you have a job or a community where you're part of and it impacts that as well—people don't understand, right? It's important to tell them, important to share, important to request understanding for this type of disease and what’s actually happening.

Understanding for cancelled plans, or last-minute changes, accommodations, whatever you need. It’s important.

If you have IBD or someone you love in your life has IBD, it’s also important to learn to be adaptable, because this disease requires adaptability.

And so those are the top eight things that you're going to face—the top challenges, and of course the top eight things that you can do about it to get your loved ones to truly begin understanding.

The reality is: bowel disease is an invisible illness, and unless you deal with it yourself, or you’re in my line of work—dealing with it and helping people through it—it’s really hard to understand.

And truthfully, at the beginning of my career, I didn’t even understand fully. And it’s important to help your loved ones understand.

And if you’re supporting someone going through it, I’m glad you had a chance to watch this or listen to this and understand yourself.

If you feel I missed anything, please do let me know. If there’s something I missed in a challenge, if there’s something I missed in a solution or what you can do about it—please do let me know.

And in the meantime, if you guys want to get in touch—please do feel free to share, send me an email, comment below, ask questions. If you're on YouTube or on the podcast, and you want to know more about the resources we have available for those dealing with IBD—for yourself or your loved ones—please do.

You can just comment, you can check the link below, and there’s information there in the notes on how to get in touch with me and my team. We can help you with this as well.

And I also want to note—we’ve got a podcast all about IBD. Not just what you're dealing with but even what you can do about it from a natural way. We've got a blog, we recently started this Facebook group, YouTube—all these resources are free.

So feel free to use them as much as you want to, share them wherever you want to, to those you think can benefit from it.

Thanks so much for being here, guys. This is all we got for you for tonight.

So again, I want to encourage you—if this is something that you feel is a resource that is helpful or has been helpful for you, and it’s something that you feel will be helpful for your loved ones, I encourage you—share this.

If you’re a loved one going through this, save this episode, watch it or listen to it again, because it’s a resource that is so, so important to understand what can be done.

And you can always—again—reach out to us anytime you have any questions, need anything, resources, questions, whatever it is. We’re here to help.

Thanks so much for coming. We’re going to see you next time.

One of my favorite things to hear as an IBD specialist is something along the lines of:

“I learned more from you in 15 minutes than from my doctor in 15 years.”

And if this, for the first time, is really starting to click, and it’s starting to make sense—you’re going, “Wait a minute… this might be reversible. I think there’s more that I can do.”

This condition came out of nowhere. It happened to me out of the blue. I was healthy for 10, 20, 30, 40 years—and suddenly I wasn’t.

And you’re telling me there’s no cause?

If you’re understanding finally that there is a cause, that something is driving this, I want to invite you to check the link in the show notes below. Send me an email. Ask a question. See if a program is the right fit for you.

Because I promise you—this doesn’t have to be a lifelong sentence.
You’re not doomed to this.
And IBD can be reversed.