sketch of a woman with long brown hair

How Living With Crohn's Disease Has Affected My Mental Health

46
46
0

Do these phrases sound familiar?

“Listen to your gut”

“Gut feeling”

“Gut-wrenching experience”

“Butterflies in the stomach”

There is a book that’s a bit of a bestseller right now, “The Mind Gut Connection” by Dr. Emeran Mayer, MD, demonstrating the
inextricable, biological link between the mind and the digestive system.

 

Dr. Mayer explains, when this communication between mind and gut is out of whack, further health problems can manifest, such as depression, anxiety, mood disorders and fatigue.

The gut has such an influence on our whole being – it is often referred to as our “second brain” – containing some 100 million neurons, more than in either the spinal cord or the peripheral nervous system. The “second brain” informs our state of mind in other, more obscure ways as well. “A big part of our emotions are probably influenced by the nerves in our gut,” Mayer says.

So gut health affects our mind and emotions too?

A recent article from Harvard Health Publication also talks about the gut-brain connection:

“The brain has a direct effect on the stomach. For
example, the very thought of eating can release the stomach’s juices before food gets there. This connection goes both ways. A troubled intestine can send signals to the brain, just as a troubled brain can send signals to the gut. Therefore, a person’s stomach or intestinal distress can be the cause, or the product of anxiety, stress or depression. That’s because the brain and the gastrointestinal (GI) system are intimately connected.”

My aim with creating my blog, Let’s Get Visceral, is to express and explore my experience of life with gut disease – specifically living with Crohn’s.

Why visceral?

Visceral in Latin means “of the viscera” (the gut).

Also, “visceral” is usually used to describe something as gutsy/raw/real.

So, let’s get visceral!

This book “The Mind-Gut Connection” and recent articles I have read about the connection between the gut and the mind resonate with me totally.

Ever since having all the surgery for Crohn’s, complications and trauma I experienced one and a half years ago (including removing the large intestine and living with an ileostomy bag), my ability to cope with life’s stresses – as much as my health now seems to be in a somewhat stable state – has admittedly suffered enormously.

Perhaps the trauma to my gut has caused a certain trauma to my emotions and my mind?

Some may call it post-traumatic stress. Well, that could make sense – having lived with the unpredictability of Crohn’s for 20 years, and somewhat recently experienced a worst case situation that lasted for 12 very uncomfortable, painful and unpredictable months.

Some may call it anxiety. I do feel highly anxious a lot of the time now –
mainly living in fear of getting sick again, and not wanting to re-live the
surgeon’s knife.

Depression? Yep – that’s a factor too, ain’t gonna lie. It’s been a challenge to re-adapt to life, as life is different now, and has to be lived differently post-surgery. Now it means slowing right down and always being mindful of stress levels. Otherwise, I am at risk of having active disease and further surgery – which is never out of the question when living with a serious case of Crohn’s disease.

A friend had a really great point recently…

(Side note: I am so grateful for the friends and family in my life who have been there when things get hard!)

Anyway, she mentioned how we need to look after the mind as much as we need to look after the body. She’s spot on.

Mental health is huge – for everyone.

We need to look after our “mental hygiene,” as another friend would put it.

This can be taken for granted – by all of us.

I know I have.

In so many of my writings about living with Crohn’s I have been an advocate for making sure those who have bowel disease follow up with our specialists, get check-ups and remain on top of our disease as much as possible. Well, through personal experience of living with a chronic illness (Crohn’s), taking care of mental heath is also vital.

I have let that admittedly slip. I have let the anxiety of living with Crohn’s, depression, fear and anger get the best of me. And it’s affected not just me, but those I love.

With what I have experienced, my response to those experiences, to a certain extent, is reasonable – though, sometimes not. Perhaps gut trauma really does affect one’s emotional life and the mind?

Whatever the case, body and mind health are essential, equally needing
attention and a lot of care.

With love,

Sylvia

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Mila_1989.

46
46
0

RELATED VIDEOS

TOPICS
JOIN THE CONVERSATION

How Diet Plays a Role in Managing My Crohn's Disease

27
27
0

I have always struggled with the concept of diet in relation to Crohn’s disease. For so long, I wanted diet to play a role in my disease; that would enable me some form of control. Unfortunately, over the past seven years, I have learned that is not quite the case.

Don’t get me wrong, certain foods definitely have the ability to aggravate my stomach. There is a difference, however, between discomfort after eating, and a flare leading to a hospitalization or a course of prednisone. I think food can best be conceptualized as an exacerbator of what is already going on inside my GI system rather than the perpetrator of disease activity.

 

To minimize the less serious symptoms of my Crohn’s disease, such as bloating and stomach pain, I stay away from fried food, oils, popcorn, green apples and a few other random things. I also struggle with eating at restaurants if the food is oily/greasy. I will treat myself to a pizza or burger every once in a while, but most of the time I prefer to have my body feel good and be fueled well.

Maintaining a balanced and healthy diet primarily based around nutrient-dense foods is critical for anyone, especially those of us with a chronic health condition. Through my own experimentation and inquiries to other members of the IBD community, I have found that each person is different in what works for them. When I find a food that does not bother me, I tend to stick to it. I enjoy eating the same meals every day if possible because that provides me with a sense of mental comfort and routine… one less thing to have to worry about.

For example, a staple in my diet is oatmeal. I can eat oatmeal every day and be perfectly content and satisfied. Mix in some protein powder and that provides me with a great fuel source for my morning. I also gravitate toward brown rice and other basic carbohydrates and avoid high-fat foods. However, this might not be the answer for someone else with Crohn’s disease. I have friends who swear by the paleo diet to maintain remission, others who are plant-based vegans. I have tried both of those extremes and have found that neither approach is right for me.

On that note, I gave vegetarianism another shot this past winter. I was a vegetarian for a few years in high school for purely ethical reasons. I still struggle with the idea of eating animals and animal products, but I know that in my situation, my body and nutrition needs must come first. I even went a step further and was recently a vegan for a few weeks. During that time I actually felt much worse, despite ensuring I was receiving enough vitamins and protein. I was bloated constantly and felt deprived of foods I love and consider healthy, such as eggs. I went back to eating lean meat (chicken and fish) as well as eggs and feel better than when I was eating a purely plant-based diet.

There are times when I can barely stomach any food due to nausea or pain, and instead of feeling obligated to provide an explanation  to others or myself, I just go with it. Some days are worse than others, but that is just part of life with IBD. I think anyone who has Crohn’s disease or ulcerative colitis struggles with a similar battle, but the issue is there is no universal solution.

I am definitely still learning about what does and does not work for my body. I used to feel ridiculous having to explain to family and friends what new approach I was taking or why I was avoiding specific foods, but I have learned to worry less what others think. I can barely keep up with myself when it comes to nutrition, so I don’t expect anyone else to.

I have yet to write in depth about my thoughts and experiences with disordered eating and Crohn’s disease, but trust me, there is a connection; I will elaborate on this topic eventually. Since my diagnosis, I have obsessed over nutrition and learning everything I can about diet to better help myself. This creates a problem for me personally because, like I said, I have found I can’t completely manipulate my diet to heal myself; there is no perfect solution. I struggle to accept that fact and still, though to a lesser degree now, try to control what goes on in my body to the best of my ability without mentally exhausting myself.

On the bright side, I am extremely knowledgeable about nutrition. Prior to my diagnosis, I would eat anything I wanted without considering the impact food has on my health. I am now passionate about learning, researching and reading all I can about how certain foods impact our bodies in various ways. Contrarily, I constantly am reminding myself that maintaining a perfect diet does not equate to a cured disease in my case.

Currently, I practice moderation, which sometimes means enjoying that dessert or whatever else I’m craving. Balance is crucial for my mental health. Most of the time, I feel better with simple meals, and to be honest, that is what my tastebuds have learned to crave. But hey, some days, I just want to eat pizza.

In short, no, diet does not affect my Crohn’s disease in a significant way. Stress, however, definitely is a major contributor in my experience (read about my latest stress-induced flare here). Do you have foods or stressful situations you avoid because of your IBD?

Follow this journey on my blog or Instagram.

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via Danilin.

27
27
0
TOPICS
JOIN THE CONVERSATION

How Crohn's Disease Helped Me Grow in My Faith

34
34
0

Growing up as a pastor’s daughter, my life has revolved around going to church. Getting there early and staying late, helping with every church dinner and never missing a week of Sunday school. I went to youth group and I was in a Christian club at school, but that didn’t mean I accepted Christ. From an early age, my relationship with Christ was weak. I found myself just going through the motions of living a Christian lifestyle. Looking back, I can say with certainty it is thanks to my Crohn’s disease diagnosis that my faith grew and I committed my life to Christ.

When I was sitting in my hospital bed on June 18, 2014, I wasn’t too concerned following my invasive testing. I was used to doctors coming back with no answers at this point and was expecting the same result. When I finally came back to after my anesthesia wore off, my parents told me what the doctor told them… I had Crohn’s disease. I could see the fear in my mom’s face. We have family and friends with IBD (inflammatory bowel disease), my family has seen the struggles associated with the disease. I was relieved I finally had a diagnosis after months of pain (looking back, maybe even years), but at the same time, I was terrified of the unknown that lay ahead. I’m a quiet person, I keep things to myself, so after my parents told me, I put in my headphones and that was it. I put Spotify on shuffle and the first song to come on was “When Life Gets Broken” by Sandi Patty:

“’Cause when life gets broken, when you’re in despair, He’ll carry your burden when it’s too much to bear. It’s down in the valley where He’ll give you strength, And there is nothing you have lost that He can’t replace. He’ll help you start all over again When life gets broken.”

My life was broken at that moment. I went from being a happy, normal high school freshman to feeling completely alone.

Recently I’ve gone back and read some journal entries from around the time I first got sick. I was lonely, depressed and wanting help. It’s heartbreaking reading those entries, but what’s even more heartbreaking is that my faith wasn’t strong. I was going through the motions, but in reading those painful words, I wasn’t seeking Christ for help. I was alone and I wasn’t accepting that I couldn’t do it on my own. My pride got in the way. I’ve always been seen as a strong girl who was determined and could rise up against any struggle. Because of this mentality I had, I believed I could do it on my own.

“In his pride, the wicked man does not seek him; in all his thoughts there is no room for God.” – Psalm 10:4

I was wrong though, I needed God. I needed the One who would make all things new. The One who is there in times of trial and the One who paves the way for the weary. When I fully accepted that I needed Christ, a sense of peace became a constant in my life.

I know today that every battle I come across, God is with me every step of the way because I am not capable of facing these challenges alone. It took for me to be at my lowest of lows to accept Christ and the life he gave me. Although these past few years have been difficult, I would not have it any other way. I am the daughter of a King, redeemed, loved, transformed and forgiven. I thank God for saving me. I thank Him for loving me so much, that even when He knew I’d turn against him, He gave His son to die for me.

This disease has made me stronger in so many ways. I’m physically, emotionally and spiritually stronger than ever before. I love the life Christ has given me. He has blessed me in so many ways. He has given me gifts and talents I use every day. And… He has given me a weakness so that I can tell a story and can help others.

“I consider that our present sufferings are not worth comparing with the glory that will be revealed in us.” – Romans 8:18

We want to hear your story. Become a Mighty contributor here.

Thinkstock photo via marydan15.

34
34
0
TOPICS
JOIN THE CONVERSATION

When You Run Out of Spoons and Your Brain Goes Into 'Low Power Mode'

37
37
0

As I’m writing this, it’s 3:30 p.m. and I’m beyond exhausted. A normal person would be excited to get off work soon and go home to do whatever they want. I’m curled up on my couch feeling like I can’t even move or keep my eyes open. How is laundry going to get done? The dishes? How can I take a shower? Or even just move myself to the bed, so I can rest! All of those tasks require energy I just don’t have within me. I don’t have the spoons!

I woke up today at 9:30 a.m. to my neighbor’s dog barking for over 30 minutes straight. I wanted to yell at the dog to be quiet, or yell at the neighbor for just letting it go on that long. But instead I just accepted that I needed to get up. So I started my day feeling like I hadn’t even slept, even though I went to bed around 11:00 p.m.

 

So now at 3:30 p.m., I can barely compose a sentence in person. I mix my words up. I just can’t seem to get the correct words out, or I physically can’t think to actually have the words come out of my mouth. I can’t focus or concentrate. My husband just called me on his way home from work, as he usually does. But I had to keep asking him “What!?” or “What’s going on? Are you coming home?” The poor guy just gave up and said, “OMG you are too tired! I can’t talk to you right now.” And he was right. I was trying so hard to listen and hear what my husband was saying, but I just couldn’t. No matter how hard I tried.

It’s as though my mind is literally shutting down or putting itself into “low power mode.”

notification on phone of low battery

My mother has called me before and had to hang up as well because I just couldn’t think! It’s sad that the people around me are realizing and just getting used to this happening with me. But that’s just how it is.

It is really frustrating because you know you have all these things that need to get done, but boy is it hard to get anything done when you can’t focus! My brain is basically saying, “Nope, not allowed. We don’t have enough power for that.” But it still needs to get done! Power or not! What am I supposed to do, brain?! The world does not stop moving for us simply because you don’t have enough power.

There is no good answer for the question “What am I supposed to do?” You essentially have to ask yourself, Do I want to push through this and pay for it later? Or do I want to rest up and feel a little more human tomorrow? Maybe then I can accomplish some things. Either way, there isn’t going to be a fix. It will happen again tomorrow, it’s just a matter of when.

woman wearing sunglasses

When I first talked about this brain shutdown on my blog, Jana Owlf Designs, I had readers mention to me that this happens to them as well. It was nice to hear I’m not the only one that goes through this. However, another thing my readers pointed out – brain shutdown can really make it hard to keep a job. And it is true! It is one of my concerns going forward and one of the reasons I am only looking for part-time work. It is a sad but very true reality for some of us. But what’s important is not letting it define us. It is just another one of those burdens we carry, but it is not who we are.

We want to hear your story. Become a Mighty contributor here.

37
37
0
TOPICS
JOIN THE CONVERSATION

19 'Hacks' That Can Make Dining Out With Crohn's Disease Easier

74
74
0

When you have an illness that affects your gastrointestinal tract, eating can become more complicated, and you may be required to plan your meals ahead of time to accommodate your specific dietary needs. For those with Crohn’s disease, a type of inflammatory bowel disease (IBD), dining out can be a daunting task. Will the restaurant have food that’s “safe” for you to eat? Will your friends or family be upset if you request to eat somewhere else? What will you do if you accidentally eat something that sends you into a flare? Is there an easily accessible restroom nearby?

Although it might take some extra planning, many people with Crohn’s (and other food restrictions, allergies, etc.) have found that it is possible for them to dine out. So, in partnership with Girls With Guts, we asked their community as well as our Mighty community to share their “hacks” for making dining out with Crohn’s disease easier. Maybe some of the following can help make eating out more of a relaxing and enjoyable experience for you, too.

Here’s what the communities shared with us:

1. “I always order everything as plain as possible and stick to places I know I can get something that won’t bother me.”

2. “I try to find menus online before going to the restaurant so I am prepared for special accommodations I need to make for my order.”

3. “I scope out the bathrooms ahead of time. I try to avoid restaurants with no bathrooms! Those are the worst!”

4. “Without making a big deal of it, if I’m having a bad flare and can’t handle food, I encourage friends to eat what and where they want and don’t mind me if I can only do lukewarm water or ginger ale. It’s about shared company more than food. I try to normalize that, so people don’t feel uncomfortable eating around me. The needling, mocking and pushing me to eat comes from their own discomfort, so minimizing that helps everyone.”

5. “I often stick with water since soda increases my output.”

6. “If ordering carryout or delivery, I write down my order to make sure I get everything right, especially with brain fog.”

7. “I do my best to be kind to my servers and explain that I legitimately cannot eat certain things and I’m not trying to stick to some fad diet.”

8. “Sometimes I eat a little something before going so I don’t want to eat as much at the restaurant. But now I have an ostomy and just empty it before I leave.”

9. “I have a mini pharmacy in my purse! Tums, pepto, Imodium, gas relief pills, everything for digestive help!”

10. “I make sure I’m able to go home straight after eating, just in case something affects me.”

11. “Do a movie and then dinner, not the reverse.”

12. “I’m very open about things and have zero problem sending something back if it was not what I ordered. I tell them straight up I’m not paying for this because it’s just going to go to waste if it’s something I can’t eat.”

13. “I always order off the kids’ menu!”

14. “I try to eat ahead of time so I have something in me I know my stomach can handle, then I can get something small on the menu and not feel pressure to eat it all.”

15. “I always check the menu before agreeing on a restaurant. If I can’t eat anything on the menu, then I’m honest with whoever I’m meeting and suggest a different place. If I really don’t have a choice then I stash safe snacks in my purse.”

16. “Sometimes, planning to meet at a place with several dining options is good, because a group can negotiate on the spot to meet everyone’s needs/preferences. I also encourage potlucks/picnics. Whether homemade, from the store, or picked up from a favorite restaurant, it’s a good way to make sure you can eat something. Also, places like malls, especially outdoor malls: everyone can go to the place they want, order to-go and meet back at an outdoor bench or table to eat together.”

17. “We try to go before or after the dinner rush. Less people, less of a wait. Easier on me by a lot.”

18. “Mostly get take-out, otherwise eat and immediately go home.”

19. “Always get the outside seat of the booth!”

What are your “hacks” for dining out with Crohn’s disease? Let us know in the comments below!


19 'Hacks' That Can Make Dining Out With Crohn's Disease Easier
74
74
0
TOPICS
, Listicle
JOIN THE CONVERSATION

12 Years Later: A Letter to My Crohn's Disease

29
29
0

It’s safe to say the month of July has been my least favorite month for the last 12 years. July 23, 2005 was my own personal “D-day”…the day I was diagnosed with Crohn’s disease. I managed to stay out of the hospital and control my disease with oral medication until July 2008…fast forward to July 2015 and I was hospitalized with my third bowel obstruction in 16 months and told I would need bowel resection surgery. The month of July is just not my friend! When I got engaged my mom and I looked at one another and knew the wedding would not be planned during that month.

husband, wife and their newborn son

As August approaches, I always feel a bit of relief. I can hardly believe yesterday marks 12 years since I was told I had a chronic illness, for which there is no cure, and one year since I started this blog. Here’s a letter to my old friend, Crohn’s.

Dear Crohn’s,

You’ve been a part of me for so long now, it’s difficult for me to remember my life before you. You’ve challenged me, shaken me to the core, tested me and taught me. You’ve pushed me to my limits, but grounded me at the same time. You’ve caused me to think about health in a whole different light. The stigma of living with you and the lack of education out there about what you are surprises me to this day. You are so much more than a “bathroom” disease. You are so much more than a bad stomachache. You demand constant attention and don’t care who has plans, because you do things on your own watch.

natalie wearing 'the mighty' shirt and holding her baby son

You perplex me just when I think we’re in a good place and I have you figured out. You love to play hard to get and rarely take my feelings or worries into consideration. You test my patience and have created a constant inner dialogue in my head since the moment the doctor opened up his mouth and uttered the words… “You have Crohn’s disease.” 

I will give you credit though – for the most part you’ve responded well to medication and allowed me to keep my drug regimen in check the last nine years. I’m thankful you’ve enabled me to stay on Humira and that I have yet to build an antibody to the drug, even though I went off of it for three months while healing from my bowel resection surgery. You obviously love when I’m pregnant…you tempt me to want a huge family! Even though you’ve stricken me with several hospital stays, surgery, scary ER visits, tests, pokes and prods…you stayed silent on my wedding day and enabled me to become a mom without causing one complication or issue. For that, I am eternally grateful.

mother holding newborn baby in the hospital

You’ve also empowered me and brought clarity to my life about what’s important and how far a compassionate heart can go. While most of the time I think of you as my greatest enemy, at times you’re also my greatest ally. You show me people’s true character, and who is a true friend. You shed light on who I can lean on when I’m too weak to stand on my own. You helped me navigate relationships and realize that Bobby was the best person and caretaker a woman could ask for. When you decided to strike I was a frail 21-year-old girl, fresh out of college, wondering how I was ever going to live a normal life and work full-time. In the last dozen years, you’ve been with me every step of the way and witnessed firsthand how I’ve overcome each setback, each flare-up, all the scares and all the daily worries. I hope you’re scared of me now.

Here’s to many more years,

Natalie

We want to hear your story. Become a Mighty contributor here.

29
29
0
TOPICS
JOIN THE CONVERSATION

Real People. Real Stories.

8,000
CONTRIBUTORS
150 Million
READERS

We face disability, disease and mental illness together.