A Swimmer With Crohn's Disease Has Made It to The Olympics

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Kathleen Baker made it to the 2016 Olympics despite her Crohn’s Disease.

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What Goes Through My Head During a 'Night Out' With a Crohn's Flare

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Saturday night my husband Richard and I got all dressed up and went to dinner for his office Christmas party. This got me thinking about how I, a person battling an active Crohn’s disease flare up, handles attending events. Normally, I would be excited and eager to get out of the house and spend time alone with Richard. Last year we attended many work-related Christmas parties together and I loved meeting new people and visiting new places. This year, however, there are other things going through my head besides who’s going to watch the kids.

  • Where are we going?
  • What food is being served?
  • Will I be able to eat it?
  • Should I eat before we go so I’m not starving?
  • I hope we sit near the bathrooms.
  • What am I going to wear – nothing in my closet fits!
  • Where am I going to find an XXS or 00 outfit?
  • How long will the night be? Will I make it to 11 p.m.?
  • I hope I sit with people I know.

The list goes on and on!

You have to understand, as much I want to be around family and friends during the holidays, it’s completely draining! Mentally, physically and emotionally.

Let me explain.

Mentally, my mind doesn’t stop prior to the event. All those questions run through my mind for days. As well, it’s mentally exhausting keeping up with conversations and stories when my mind isn’t as sharp as it used to be.

Physically, it takes me hours to get ready — and I don’t say that lightly or as a vanity issue. It’s physically exhausting for me to take a shower, dry my hair, get dressed and then to do my hair and my makeup. My body requires me to take several breaks between sessions. I need to sit, relax, perhaps have a small bite to eat. For this particular event, I took a shower in the morning. I did my makeup at 1:30 p.m., fixed my hair at 5 p.m. and got dressed at 6 p.m., for a 7:30 p.m. event.

Emotionally, it’s draining because there are times I am so tired, I struggle to talk to people. I have a hard time starting the conversation and maintaining it. I want to be social, I want to meet new people, but it’s tiring. I sometimes feel I need to put on a show, put on a smile and pretend to be happy, when really, I’m counting down the minutes to when I can get back in bed.

Perhaps this sounds harsh. I don’t mean to offend anyone or make it seem like I don’t want to be around you. I love seeing my friends and family and spending time with them and I am looking forward to the next three weeks of parties and gatherings.

But…

If I’m quiet, not engaged in conversation, it doesn’t mean I don’t want to be there, just means I’m slowly coming down from the excitement of the night.

If I ask you to repeat your story a few times, or clear it up for me, it’s not because I’m not paying attention, it’s because my mind can’t keep up.

If I start laying down on the couch, it’s not because I’m bored, my body just needs to rest.

If I’m not eating your delicious looking meal or dessert, please don’t be offended, I just know there are trigger foods in there that I can’t eat.

If I’ve disappeared for too long, or several times throughout the evening, it’s not because I’m avoiding you, or conversation or I’m bored… I’m probably in the bathroom.

If I leave early, don’t be offended, I’ve just reached the point where my body says, time to go.

One night out for most can be as easy as,

  • “Who will watch the kids?”
  • “What am I going to wear?”
  • “How are we getting there?”

But as you can see, for me, it means a lot more than that.

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'Should I or Shouldn't I': Indulging on Food Over the Holidays With Crohn's Disease

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Food. It’s only a four-letter word, but did you know it’s actually one of the most complex words in the dictionary? Really, it’s true! Well, for some of us anyway. Let’s get one thing straight: I. Love. Food. I love food. I love food!

Food. We can’t live without it. Literally – we need it to function. Without it, we would fade away to a shadow. But aside from being as necessary to us as oxygen, it is also a pleasure – an immense pleasure! We usually eat whatever tastes delicious to us, whatever makes our taste buds scream with delight. How magnificent that every day – at least three times a day – we get to consume something that elates us. No matter what is going on during the day, we can always take pleasure in those big and wonderful decisions of what we are going to eat!

Food also has the capability of not only helping us exist, but allowing us to exist in ways that are either beneficial or detrimental to our physical selves. (Now it starts to get really complicated…brace yourselves.) Food can have the ability to help us gain or lose weight, depending on what and how much we eat. Particular foods give us nutrients, minerals, proteins and fats that can help alleviate particular ailments the body is presenting.

Let food be thy medicine and medicine be thy food.” – Hippocrates

Spot on! We had this wisdom B.C.… so why has it all become so complicated? Personally, I think that with the introduction of preservatives, chemicals, faster/more high-tech ways of producing food for the masses, our food has lost its natural and organic healing properties. Instead it has turned nutrition into a confusing state of affairs, promoting health concerns, bad digestion, bacteria, etc. rather than health. And perhaps that is why our culture is now turning back towards the organic way of life. However, even with an organic lifestyle, food is still not so simple. Food can be confusing, especially if you have particular ailments.

The thing is, when you’re living with Crohn’s, food does become a major issue. It can sometimes help, but it can also hinder and cause pain. I like to think I can eat what I want. You know, everything in moderation? But some foods have more of an effect on the gut than others…

Like ice cream. Darn it! The one constant with a lot of these health diets seems to be that sugar and particular dairy (milk especially, though hard cheeses and some yogurts seem to be OK) can disrupt your system. I always find that when I have too much “naughty” dairy it affects my digestive system. Some cramping and bloating will also be on the dessert menu.

Like alcohol. Gosh dang it! To crack open a bottle of red with someone, kick back and enjoy… how lovely! Until you find you’re running to the bathroom a bit faster than usual.

Like chocolate. Will you stop already?! Indeed, this well-known favorite is similar in effect to ice cream – the combination of sugar and cream seems to irritate the digestive system. Eating too much can leave me feeling uncomfortable. But who’s to stop me, right? I’m not a quitter (…when it comes to indulgence, that is).

All these delightful foods seem to have more of an effect during a “flare-up” of Crohn’s (when your digestive system is somewhat inflamed/ulcerated/active with disease). When consuming these things, your system is far more sensitive than it would be if you were in remission and without the active disease that causes bloating, an increased need to make a mad dash to the nearest bathroom and usually some cramping and pain.

There have been times when I was symptom-free (this doesn’t mean disease–free – the disease was just inactive) when I was having dinners with friends, drinking the wine, eating the brie cheese, having the chocolate (70 percent dark, thank you very much – yum!) and my system didn’t react at all! Other times, like now unfortunately, my system is very sensitive. I watch what I eat more because when the digestive system is sensitive, you can immediately feel the pain, cramping and bloating after eating something. Since I have also had a lot of surgery in the past and there is active disease around the scar tissue in parts of my small intestine, I am now finding it beneficial to eat foods that are easier to digest, such as bananas, oatmeal, eggs, well-cooked vegetables, fish – wholesome, but gentle on the gut. (However, I will have a delicious gluten-free chocolate brownie from my local bakery on occasion, and come the holidays I will be having an extra serving of dessert!)

We often try different diets if we have health concerns: paleo, vegan, vegetarian, ketogenic, gluten-free, sugar-free, juicing, “The Maker’s Diet,” “Eat Right 4 Your Blood Type,” “The Specific Carbohydrate Diet”… Not to brag, but I have tried them all. And those are only a handful of what’s out there.

When presenting a lot of flare-ups in my early 20s, my then-boyfriend and I researched “The Specific Carbohydrate Diet” and “The Maker’s Diet.” Both very wholesome, beautiful ways to eat – for anyone. But especially for people with Crohn’s. Both of these ways of eating were about consuming foods that were grain-free, mostly dairy-free and sugar-free, and full of nutrition, protein and healthy fats. Beautiful! However, what if you really want to bite into a banana muffin or sip on a chocolate milkshake? Sorry, not allowed. In the intro of “The Specific Carb Diet,” the author Elaine Gottschall expressed that you can’t deviate from this diet at all. Not even a bite of something “naughty,” because that one bite could affect the chemical balance in your body and boom: you could trigger a flare-up.

Trying to sustain yourself on one of these health diets long-term is difficult, but I did it – I stayed on the Maker’s Diet for a few years. I believe this way of eating really does make sense for my body. And it helped me. I wasn’t totally symptom- or disease-free, but it helped.

So why not stay on this diet 24/7? Because I’m weak. I love chocolate. I love red wine. I love pastries. I love coffee. I love pizza. I love going out to dinner, not worrying and eating what I want with those I love. Dieting becomes especially difficult during the holiday season when you want to kick up your heels and throw all care to the wind. Heaven help me!

I wish food wasn’t such an issue, especially when I love it so much! But, this is life with bowel disease. It’s going to be a constant conversation with yourself: “Should I? Or shouldn’t I?” One thing is for certain with Crohn’s disease: you are always learning! You’re constantly checking in, listening to your body and discovering that what may work for you when you are symptom-free may not work so well when your disease is active.

Ah well, c’est la vie. If only that four-letter word was simple.

I’ll tell you what, though – when you do go for that food you know will cause you a little grief in the near future – perhaps as a treat over the holidays – my goodness, you savor it.

And when you see that person sitting down to an ice cream, making love to it with their eyes, slowly taking a bite and groaning with pleasure… as awkward as it may seem, take a step back and tip your hat, for that person is enjoying every second of that creamy sweetness, perhaps with a sacrifice in mind.

Anyway, just some “food” for thought. Happy Holidays, all! May you enjoy every mouthful of your sinful delights.

With love,

Sylvia

#CrohnsAwareness

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When Bad Experiences in the ER Make You Fearful of Seeking Treatment

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Let me start by saying that in general, I’m not a person who finds herself afraid of many things. However, for the past year or so, I’ve begun to be anxious, worried and downright scared of one particular thing – seeking medical attention!

I have an entire smorgasbord of chronic illnesses – Ehlers-Danlos syndrome, postural orthostatic tachycardia syndrome, Crohn’s disease, endometriosis, diabetes and asthma, to name but a few. I’ve had issues with Emergency Medical Services due to Ehlers-Danlos and POTS, and this seems to have now bled over into worry, anxiety and stress whenever any of my conditions flare up. I have sat for days weighing the pros and cons of obtaining medical assistance, whilst trying my absolute best to deal with symptoms at home myself. I would rather do anything than attend the Accident and Emergency (A&E) Department or request an emergency doctor appointment just to be told to come back in a week if my condition doesn’t improve!

I’m currently dealing with quite a severe flare-up of Crohn’s disease. I’m already on corticosteroids which would normally calm down any inflammation in my bowel, but this time they just don’t seem to be doing the trick. I’ve been in a flare to one degree or another for around two weeks now, though I’ve been getting much, much worse in the past five days. Yet still I sit at home trying to deal with the really unpleasant symptoms by trying home remedies such as clean eating, avoiding certain foods, trying new medications and giving my poor bowel a rest – all to no avail.

In my heart I know I really need to be seen by a GI, but that means admittance to the hospital via A&E and my head, which isn’t exactly thinking clearly, is being stubborn and refusing to admit I need urgent assistance. I’ve tried to convince myself and my family that it’s probably just a bit of a bug, that it’s not as bad as it seems… I can see the look in my partner’s eyes when he hears me crying on the toilet for the seventh night in a row. Yet still I stubbornly refuse to go get some help.

As I’m sitting here, yet again in pain after eating, I’m getting the familiar stomach cramps and nausea and know that within the next hour or so, I will be on the toilet in absolute agony. But I also know that the last thing I want to do a week before Christmas is be admitted to the hospital. So what options are left to me? I seem to be developing some kind of post-traumatic stress concerned with hospitals, especially when it comes to emergency care – so do I risk being admitted, potentially over Christmas, or being sent home again to deal with it on my own, or worse, having my symptoms and pain dismissed? Or do I try and ride out the storm of this flare-up, hoping and crossing my fingers it will calm down on its own? There are no easy answers – and I know many, many people out there with chronic illness experience this issue day in and day out.

If you broke your arm or your leg, you wouldn’t hesitate to go to an emergency department, yet when people like me with chronic illness desperately need medical assistance, we sit and mull over the consequences. We lie to ourselves that it really isn’t that bad after all and we tell ourselves it isn’t really an emergency, so we can’t possibly go to A&E with the crippling stomach pains, vomiting and unrelenting chills. Yet if a person without a diagnosis experienced these symptoms, they wouldn’t think twice about getting themselves checked out – so why do we put ourselves through this self-doubt? And more importantly, why do so many medical professionals treat these two distinct groups of patients so very differently?

If my partner was having the same symptoms I’ve been experiencing for the past week, he would have been in A&E and probably admitted for tests, pain relief, etc. three days ago – yet I fear I would be dismissed, ignored, berated and have to legitimize my attendance in the emergency department.

I personally think it stems from the many, many times I have been doubted in A&E, called a hypochondriac by doctors and specialists, been dismissed by paramedics and GPs… It all takes a toll on your mental well-being and leads you to doubt your own body. The danger here is that we ignore that one symptom that may prove fatal or we don’t seek the help we need to prevent an even worse deterioration in our health. But while those with chronic illness and invisible disabilities are still treated so appallingly by the medical profession, the very real risk remains that people who really should be seeking urgent treatment will wait and wait and wait… and they may very well wait until it’s too late.

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How the 'War' on Medical Marijuana Affects Me as a Crohn's Patient

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It’s no secret that marijuana is used to treat countless disorders and diseases. In fact, more than half of the United States has legalized medical marijuana for patients with qualifying conditions. As of March 1, of 2016, more than 1.2 million Americans were registered medical marijuana card holders. Despite legality, scientific research, and my own living testimony, I still find myself constantly explaining and justifying treatment with marijuana.

I have been struggling with chronic pain and illness for the last six years of my life due to my Crohn’s disease. I’ve struggled to eat since I was 16 years old; I actually ended up on a feeding tube at one point. The last medication I used to treat long term nausea and vomiting gave me an irreversible neurological condition. Seemingly out of options, I turned to marijuana, since it has been proven to be safer than any of the previous drugs I’ve tried. I didn’t use medical marijuana until I became an adult, but since I’ve started using marijuana on a regular to semi-regular basis, I can actually eat full meals throughout the day without vomiting or abdominal pain. The best part? I don’t have any negative side effects while using cannabis.

I’m not the only medical marijuana patient to claim marijuana helps my debilitating condition — just ask the other 92 percent of users who say the same. My marijuana use is not something I typically share with people outside of my family and close friends because I’m afraid. Medical marijuana patients are often shrugged off as stoners, addicts, potheads, etc. People can’t seem to realize that marijuana is a real, working medicine and treatment.

Not only is the social stigma a downer, but using medical marijuana can have serious consequences. Many companies prohibit the use of marijuana in any circumstance, often resulting in patients having to sacrifice their treatment just to keep a job. Or reversibly, patients end up unemployed because marijuana is their only treatment option. Patients who are also parents and guardians have had encounters with child protective services (CPS), and some have even lost custody of their children over their private and personal use of medical marijuana. Just recently, the NFL suspended Seantrel Henderson for his use of medical marijuana to treat his Crohn’s disease. He’s using marijuana for the exact same reasons I do, and he’s being punished.

As a chronically ill patient who looks to marijuana as one of the few working treatments available, I feel like the world is against me. I don’t understand why so many people have to fight for their right to a healthier and happier life. My medical marijuana is a right, and it’s discriminatory to hold anyone’s medical treatment against them in any circumstance.

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Being Judged for Gaining or Losing Weight as a Woman With IBD

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Today is the fifth day of Crohn’s and Colitis Awareness Week. I’ve been browsing the boards and reading some posts of my favorite bloggers. The theme of the day? “But you don’t look sick.”

If only I could see all my fellow IBD’ers now! Eyes are rolling.

We live in such a superficial society – especially for women. One of the many effects IBD has on the body is weight loss or, yes, weight gain.

When I first got sick, I had emergency room nurses tell me I should thank my lucky stars I wasn’t 80 pounds. Basically they told me to suck it up because I “couldn’t be that sick if I wasn’t underweight.” I left feeling defeated, and from that point on, I compared myself to others with Crohn’s disease. Maybe she’s right, I thought. Maybe I’m not that sick since I’m not seriously underweight. This is a dangerous way of thinking for someone with IBD.

That experience played into my fear that I wouldn’t be taken seriously if I wasn’t a walking skeleton. When I did lose weight, I got so many compliments – even strangers told me how great I looked.

When I was put on steroids and started gaining weight, just like that… all the compliments stopped. They were replaced with, “It looks like you’re feeling better.”

No! No! Not even close.

But I was so embarrassed by the comments about my weight gain that I’d just nod my head and say, “Yup, feeling great.”

The medicine used to control the inflammation can make you gain weight so quickly, and you have no control over it.

Imagine: not only have you lost control of your bodily functions and energy levels, but now the medicine that is supposed to help you feel better is also changing your body and probably giving you mood swings that would give any teen a run for their money.

You may look OK on the outside but your insides are on fire. Every joint in your body hurts and it takes every ounce of energy you have just to get out of bed.

In the past year alone, I’ve watched my weight go up and down more times than I can count. I have three different sizes in my closet, not including the clothes for days I’m too distended to wear my normal wardrobe.

It’s hard to adjust to what you’re seeing in the mirror and everyone treats you differently because of outward appearances.

A few tips if you have a friend with IBD:

  • Don’t mention their weight. Trust me – we know if we’re losing or gaining.
  • Don’t assume they’re feeling better if they’ve gained a little weight.
  • Don’t ask how they could possibly be tired without having done anything.
  • Lastly, never tell them they don’t look sick.

Crohn’s and Colitis Awareness Week is December 1st – 7th. I am #IBDVisible.

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