Tag Archives: IBD

Losing the weight

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Most people are struggling to lose weight. Probably because most of us are overweight, or if you are brave enough to look at a BMI chart, even obese. Unfortunately there is no magic pill, hidden button, genie granting wishes, no fast lane. Because we are a nation of instant gratification, we don’t really want to put in the hard work. The standard American diet isn’t healthy. You can try 100 different things, all proven, and yet nothing works. Or worse, you put in the hard work and either you don’t lose enough (or any) or the second you “cheat” it all comes back on carrying along some new friends.

You might look at me and think I haven’t had that struggle. You’d be wrong. I’m 5’4 (and no, I won’t prove that because I don’t want to be 5’3) and my weight has been everything from 100 pounds to 200 pounds.

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When I was in high school, I couldn’t have weighed more than 100 pounds, fully dressed, in shoes. I ate the typical spoiled brat diet of M&Ms and Doritos with a side of Pizza every weekend. I drank soda instead of water. My exercise was wondering around the mall, probably eating more junk along the stroll.

I wasn’t all bad. I remember now the walks I’d take before I got my driver’s license. I’d want to meet a friend, or go to a certain store, or whatever, and I’d walk miles to get where I wanted to go. If I couldn’t beg up a ride. Now I think about how I’d walk home from school, then turn around and walk back down the hill to meet my boyfriend (now, my husband) and we’d walk downtown and if we were lucky we would either have enough change to get the bus home or we would time it to meet my mom after she got off work for a ride home. There were many times I would “need” money and I’d make that trip downtown just to get to my mom, get cash from her then go off to the mall or movies, whatever. I’d walk far just for that $10. And yes, that dates me a little if ten bucks could last me all day and I’d come home full of junk food with a shopping bag of goodies.

Nowadays with a car, I don’t walk that much. Not for $10. Maybe if I ran out of gas, but I fill my tank up to avoid that exact situation. I’d love to say I’m a passionate runner, triathlete, cyclist, or a rock climber. The truth is I don’t really do much of any of those things.

So how did I lose the weight? My husband and I changed our ways. I was up to 200 pounds whenever I’d get hospitalized for my Crohn’s disease and put on steroids. My husband was up around 275 by eating a healthy diet of fast food and beer. When I wasn’t sick, my weight would sit around 160, maybe 150 if it was starving.

Most of my weight came off when I was sick but my husband wasn’t that (un)lucky. His loss was all hard work and dietary changes. But, I’ve kept it off and I’ll tell you how we have done this.

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I’d like to first say that not everything that works for one person can work for others. If you’ve been trying to lose weight then you already know this. It can be frustrating, especially when some skinny says, you should _____ as if you haven’t tried everything and are still waiting to hear back if your soul was sold to the biggest bidder.

My husband went vegan. After watching documentaries like, Hungry for Change, Engine 2, Forks over Knives, Food Inc and so on, we then read books. Books like, The China Study, Thrive, Finding Ultra, Fat Sugar Salt, Food Rules. There are tons out there. Read one and chances are they will reference a book in their book, then go read that one. It’s like a scavenger hunt.

All these resources plus online sources really establish a strong base for going vegan. Now, I’m too picky for that large of a jump. Since my husband says he is “plant based”, I’ll steal that as well even though I do eat animal products. I am adding more and more healthy choices, which are starting to crowd out the less healthy.

My husband is completely vegan and limits any oil intake as well. He trains for things like the Leadman Epic 125 and other insane events. I’m not running 10k events or cycling 100 miles and I’m definitely not swimming more than a lap or two. If you can get into some zone and do all that, awesome, you’ll be losing weight like crazy. If you don’t have the time or drive for that (yet), welcome to the club.

How I have kept off the weight, is pretty easy, now. I switched so much stuff around that in the beginning it was a steep learning curve but now it’s actually easy.

Step 1
I watched, read and researched the diet I wanted. I use the word diet here meaning the foods I am going to eat….not necessarily the plan in which I wanted to lose weight.
For me, that meant local meats, dairy for a local family owned farm, fresh produce from organic and as close to me as possible, and very little packaged foods.

Step 2
I changed grocery stores. This slowed me down since I wasn’t sure where anything was. I paid attention to where items shipped from. How it was grown. How it was packaged. Instead of reading claims (fat-free, no sugar, gluten-free, etc) I looked for fresh and real. Having crohn’s this was a challenge and I’m still slipping occasionally and eating blah packaged something if I’m flaring too bad but it’s getting more rare.

Step 3
I buy local. Remember back, way back, maybe your parents but more than likely your grandparents use to talk about so & so’s store/farm/restaurant? They knew the owners and chose to support them. I do that now. If I am going to go to a restaurant, it’s going to be a small locally owned place where I feel my money is well spent. That means goodbye to all the fast food joints and even big box stores. I try to keep my money near me.

Step 4
I tried a bunch of new recipes. Since I was now cooking almost all vegan meals, this means you can now sample the foods throughout your cooking process. Since I’m picky, I got to try things raw, semi-cooked and then cooked. I found I actually do like more foods than I thought. By cooking more, I’m more invested in my meals. I eat slower and less often. If I want cookies, it takes a lot longer when you have to make them by scratch then back when I could just pop open a bag of them.

Step 5
I don’t count calories or fat grams or carbs or make sure I have enough protein. I just eat. If I want butter on my baked potato, I use real butter, and only a tiny it goes a long way when it’s the real deal. I only buy foods at the store that I need for my cooking and that way when I get snacky, all I have around to grab is fresh produce or whatever I’ve most recently cooked. I also don’t drink my calories. Drink water all day long. I drink nonstop. (That line makes me smile)

Step 6
I got out of the habit of shopping only once a week. By going whenever I need something, I no longer have a weeks worth of food to eat all at once on Monday. I also get smaller portions of things since I know I’m going back to the store in a day or two. It also allows me to meal plan day to day rather than guessing on Sunday what I will eat on Wednesday. If planning helps you, then by all means, schedule it out. But you may want to still only buy foods for a couple days in advance.

Step 7
I look at food as fuel. Usually people will say this and mean they eat kale all the time and while its not tasty, it’s fuel. Yuck. I mean, it’s expensive. When you go gas up your car, you expect high prices. You get the right kind of fuel for your car so it doesn’t break down later. So when my grocery bill is more than normal, I remind myself I am buying quality not quantity and its to fuel my body and my family. It also helps that I break my shopping up and only see smaller dollar amounts because I full weeks worth can top $200 pretty easy. Just remember to shop for what you want to be putting in you and not because its on sale or a bargain.

Step 8
I move more. I’m not in training. Once I lost weight, I actually did run a 5k but that was torture. I do try really hard to do more than I use to. I walk more, I climb more stairs, I play outside more and I just get up and go more. If you can fit in any exercise, you’ll be that much more healthy. You don’t have to set up something where you have to run 3 miles a day, or else. Just plan on doing something active everyday. One day, you can run, another day maybe you’ll swim or cycle. Just commit to a healthier lifestyle.

Step 9
Remind yourself why you are doing this. Are you losing weight? Getting healthier? Becoming more active? Just remember why you started. When it gets tough, remind yourself and get re-motivated. Re-watch the documentaries, go online and research foods. Become more involved with what you are eating and why.

Step 10
Give yourself a break. That doesn’t mean flop on the couch, although sometimes that is totally needed. Sleep really does aid in weight loss so nap if you can, but definitely go to sleep early. Just don’t beat yourself up. Maybe today you can’t run a mile without stopping (I can’t) but maybe tomorrow you can. As you eat real fresh foods, your body will start to level out. Your weight will drop and stay in a normal range. Once you stop eating processed crap that claims to be fat free, you’ll feel better and look better. Mostly though, be ok with yourself. I started wearing shorts again. I thought for sure, everyone would see the saggy skin, the stretch marks, the pale see through white skin…..no one looked. I started realizing that it was only when I compare myself to others that I worry what others think of me. When I stopped looking at others, I stopped thinking they were judging me. I wear my shorts. In fact, I now wear a bikini and it doesn’t even bother me that my body sags…..ok, that’s not true. It totally bothers me that I’m not tan and fair but it no longer stops me from wearing what is comfortable and doing whatever activity I want to do.

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Tying to lose weight is so difficult. While you can have support groups, friends struggling with you and goals, it’s really an individual sport. You need to do what works for you. If you focus on getting healthy, eating healthful foods, eating right, then your weight will fall into your goal zone. Add in the active lifestyle you want now. Don’t wait until you are thin to do what you love, do it now and focus on yourself and don’t judge others. They really aren’t judging you. If they are judging you, really they are comparing and judging themselves. So, don’t buy into their insecurities and make them your own.

Be healthy. I’ve found my gut is following my lead. I’m eating better therefore my flare ups are getting better. My weight is stable because I eat as well as I can without too many cheats. Cheating for me is eating dairy because my goal really is to be vegan.

Be happy. I know when you are overweight, it is hard to be anything but focused on the problem. Focus instead on the solution. The cure. Get healthy and your body will follow. You will have more energy and drive to do even more when you are using the right fuel.

Last, just keep going. Spend free time researching and watching documentaries or reading books. It’s really hard to sit down with a large diet soda, a bowl of chips and a dish of ice cream and watch a movie about food, health, diet, etc.

You really can do this. You are the real rockstar!

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Summertime Fun

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Well, it’s been a long time since I blogged. I have been busy with summertime fun, dealing with my crohn’s and researching a vegan topic that has me reaching.

Summer is in full force with high temps and blazing sun. I use Kinesys sunscreen that I buy online. I actually first tried it in Hawaii at the Ironman comp, and loved it! It’s amazing because I am allergic to everything and burn within minutes, but with this, I spray it on and stay nice and white….day glow white. Ok, I wish I could tan. Even knowing that it isn’t healthy, blah blah blah. I am seriously Casper the ghost white. See my blue veins white. People put on sunglasses to look at me white. Oh well. Grab your sunscreen here: http://kinesys.com/

Now, the heat is proving to be a challenge for my Crohn’s. I have heard some people say it will cause them a flare up, but I hadn’t really experienced that in the past. Most summers, I spend my days inside, curled up in the AC. This year, I’m outside more. Hitting the public pool, going to the county fair, picking berries at the farm. Incredible summer so far! However, being in the heat has proven to be a real gut wrencher for me. I’ll be laying there, glowing, and all of a sudden it feels like I’m in an oven and my guts are freaking out. I’ll get all pukey feeling, gag a few times as I rush to the toilet….really bites. It’s happened enough that I know it isn’t something I am eating, it’s the heat. So, remember to drink lots of cool water, well, as much as your gut allows. Then drink it often. Grab some shade before you get sick. For me, that’s after about 30 minutes. Then I guess the only thing you can do is be excited that you are enjoying the sun for any chunk of time you can because even running off to the bathroom in public clutching your mouth and gut, is in many ways better than being in bed, or ick ick in the hospital.

Last, I’ve been reading and reading and pondering. I’m going to blog about all this research once I can wrap my head around it better. My husband has lost over 90 pounds after going plant-based (vegan). He is back doing triathlons and other fun things. I have lost over 50 pounds with a combo of Crohnie Crash and better eating. Despite the flares, I’m sticking to fresh fruits and veg as often as possible and staying away from processed food. So, lots of people have been asking us what we are doing. Usually I say they can skip a huge amount of time by just taking their food and flushing it down the toilet, but then they look at me funny because not everyone gets Crohn’s humor. My husband, Mr Vegan is pretty quiet about all the changes he made. Mostly he says he is eating better but then everyone wants examples to see if they can duplicate your hard work. As soon as he says plant-based, most ask “vegan!?!” Yes, vegan. Oh man, insert every common question, concern, debate, whatever right here. I thought Mr Vegan was quiet because he didn’t want to push his views onto others. Holy cow, I think he doesn’t want to have to spend time defending why he no longer eats crap fast food and yes, he is getting enough protein and yes, his doctor knows what he is doing and no, it’s not that radical. So, my research is going.

How do you explain your eating viewpoint without being preachy, yet kindly deflect their concerns, answer their questions and get out of the debate quickly without one side flipping over a table? That’s my homework. I’m reading The China Study. I’ve done some reading on proteins, essential amino acids, calcium, casein and so on. I’m hoping to gather up enough to basically write a somewhat short reply that would answer some of the questions my husband gets slapped with.

Ever feel like when people ask you exactly what you eat and how…..it’s almost like asking a woman exactly how did she get pregnant. I already get asked all sorts of things for my Crohn’s. My favorite would be the “have you tried…?” ones where sometimes they really do have advice I haven’t heard but usually it’s asking me if I have tried not eating gluten, or dairy, or whatever. I understand, I mean, people (like me!) are really curious. And not always in that nice way. I mean, sure ask what we have been doing, but then be supportive or go google your highest concerns. Don’t try to convert someone into going back to eating crap. I can guarantee we eat better now than before. I especially love people that will hound Mr Vegan only to then say that they don’t like vegans because they preach too much. Oy! Seriously? So…..off my high horse, stepping down so I can get out to that gorgeous sun, but I will be back. I’ll try to get a simple clean answer that will satisfy those that ask, are you sure that’s healthy?

Have a real good day!

What are they feeding us?

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I read constantly. I will read any book that happens to get in my reach or happens upon my nook. I finish every book I read, no matter how bad it might be. I love to edit and research and learn. When I find a topic that interests me, I like to look at it from all angles before forming an opinion. Even after I have an opinion, I’ll change my mind if I learn more or differently. I am not without fault, sometimes I get it wrong. Very wrong.

I use to believe that I couldn’t make a difference. Now I am ashamed I might have passed that thought to my son. Each person does make a difference.

I use to think one didn’t matter. Such as, one more time won’t hurt; just one will be fine. Boy, was I wrong there too. One becomes two, two becomes a dozen, a dozen morphs into hundreds and if you allow yourself to just “one more” or into thinking one doesn’t matter….it does!

I use to say that it didn’t matter if I bought this or that because it was already made, already there. It’s not like my getting it made a difference. Like my dollar spent even counted.

I bought the name brand products. I loved junk food. I liked the ease of popping something into the microwave or grabbing “food” in a drive up for dinner. The speed dial of pizza delivery. The Standard American Diet…..sad.

Then I woke up. From a nightmare.

My health was horrible. My crohn’s was flaring like never before. I was dropping weight, taking meds, pleading with doctors to not hospitalize me.

My husband was overweight. He was worn out, grumpy, depressed. He slept with a CPAP. His days of Ironman Triathlons were done. His back hurt, his feet hurt.

My son was tired all the time. He didn’t want to do anything anymore. His energy level was dropping along with his spark. He munched on the crappy snacks I provided then chowed the crappy dinner I served.

We were all starving. Starving not just for REAL food but for life.

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I took my love of reading and went crazy. I have read dozens of books about food and diet. We’ve made some huge changes — that have actually been easier than you’d think.

My crohn’s isn’t perfect but I don’t expect it to be. I push my limits with my new diet. I don’t just eat white processed foods. I am trying to expand my diet to a plant-based diet full of variety. I lost 50 pounds in the process.

My husband has dropped over 70 pounds (and not by pooping like me) by changing the way he sees food. He eats only plant-based meals. His diet is most easily defined as strict vegan. Zero animal products or by-products. He’s thin, fit, exercising comfortably. He’s running races, cycling, swimming, all in preparation for a triathlon at the end of the summer. I can describe him as an athlete again. He sleeps without the loud machine and looks 10 years younger and refreshed. His work has improved. He quality of life has dramatically improved. All he did was switch to an all plant diet. It is an amazing and formation. I wonder how I’ve changed? I know I have…..

His transformation has been so inspiring that my son and I are trying desperately to mimic him. We are just such picky finicky eaters that we can’t eat the variety my husband eats yet. YET. We are working on it. With my crohn’s, I do add in and try new foods a bit slower but I’m doing my best without pushing myself so far I flare. With that, I am encouraging my son to try new foods. He has been so great at trying, unfortunately, he hasn’t liked much he tries….still, baby steps.

After eliminating the junk food, stopping all the fast food and educating our whole family more, we are all improving in leaps and bounds. My son is active again. His skin looks terrific and his smile charming. His outlook is very positive. He is so supportive of the plant powered diet that I love listening to him explain the benefits to an adult. He’s very passionate about health and food and quality.

Let’s pause on that word. Quality. That word is what made me grab my iPad and start tapping away at this post. Quality.

What the hay is up with GMO and other “food” like crap we are buying, eating, and serving to those we love? We are not educated on what GMO is or does unless we go look for the imformation ourselves. My father was agreeing with me when we talked about how horrible it is. Then I realized, he thought companies had to inform us when they used GMO ingredients. Nope, not in America. He was floored. He is a very intelligent man. He watches the news, reads the paper, he is well-informed. So how did he miss that? How did I?

Until recently, I couldn’t have told you what GMO even stood for. Yet now after learning more, I still can’t explain to my son why these big ass companies feel the need to use these products. Beyond greed, it doesn’t make sense. Have you ever tried explaining something to a child? Where you can slide stuff by some adults, maybe sway the story, leave out parts you don’t agree with or don’t understand; you tell that same story to a kid and they’ll call you out. They question the simplest things and man, they want answers!

So, in my research (and its far from complete), I’ve learned that big companies will bury the facts so deep that you start to believe what they want you to believe. You can easily fall into the trap of believing that you need meat twice a day (gotta get that protein) or that milk, it does a body good. You might even feel comforted that good ole McDonald offers more healthful choices now. Maybe you don’t feel GMO is damaging us. Or maybe you don’t think that children are effected by all the hormones in meat and dairy. Perhaps you haven’t heard of BVO or care much about essential amino acids. Maybe you are still sipping that diet soda hoping to lose some weight. No worries, we’ve all been there. Sometimes, I don’t feel that far off from all that.

Baby steps! My researching is opening my eyes. I’m teaching my family. I’m choosing where I want to spend my dollar. I’m not accepting just “one more”. I am done ignoring the facts. I am done with the excuses. I am looking for answers in that straight forward nature frequently reserved for kids and old folks. I’m making changes that will benefit me, my family, my community, my world. Because, I do make a difference. My dollar counts. My vote counts. My life relies on me making the right decisions. My health is too precious for me to keep ignoring it all. Hopefully, I can inform others of what I know, what I learn through websites, publications, news stories and my beloved reading. I learn so much from those I follow on twitter. I truly feel it’s a give and take exchange of knowledge. I learn from you while sharing what I know.

Together, we really make a difference.
Really.

Comments to a Crohnie

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When you have a chronic disease, like Crohn’s, you hear some pretty crazy things. Here are some that have actually been said to me. For real.

I just had the flu so I totally understand what you deal with! (Yea, it’s just like that only different)

My friends mom has that and she’s fine. (Good for her)

You don’t look sick. (Thanks?)

So, what can you eat? (Do you mean today?)

What exactly is crohn’s? (Asked at the dinner table)

Are you really going to eat that? (Was going to)

(After a long bathroom trip) What were you doing in there so long? (Just sitting on my ass)

Are you just in the bathroom playing on your iPad? (Yes, the toilet is just so comfortable and I especially love it when my leg falls asleep, fun)

This is important to me, please don’t bail. (Well in that case, I’ll make my guts do what I want)

You’re not a very good friend, I mean, you are sick all the time. (Thanks, I wasn’t feeling crappy enough as it was)

Can’t you just have surgery? (Maybe getting inches of gut cut out doesn’t sound bad to you)

I get an upset stomach when I eat spicy foods, do you think I have crohn’s? (You should probably get a scope, they are fun, ugh)

My doc said I have crohn’s and I feel great, I don’t understand why you don’t? (I should see your doctor, he must have a magic wand)

OMG, I’ve heard of that! You could die from that! (Whoa, hope not!)

So, why isn’t there a cure yet? (When was the last time you raised money for IBD?)

Can’t you wait until we get home? Just hold it. (Do you really want me to poop my pants? In your car? Really?)

No big deal, everyone poops, right? (Yep, I just do it a dozen times a day)

I just take Motrin for my PMS cramps, have you tried that? Maybe that would help. (Good idea, it’s not like I haven’t tried every med out there already)

You take steroids? OMG, you’ll get all buff! (Nope, just get the ‘roid rage, grrrrrr)

Why don’t you just get some sleep? (Why didn’t I think of trying that?)

You have to go to the bathroom again? (While pausing the movie, again)

You can go, there are bathrooms there. (And all bathrooms are equal)

How can you be a good parent when you are so sick? (Hey, my kid loved having stories read to him in the bathroom)

Can’t you just take medicine? (More than the handfuls I already take?)

You know, you can’t expect special treatment. (Gee, really?)

You were in the hospital again? What for? (Just taking a little break, thought I’d have a little spa week. They wait on you hand and foot, especially after you ring for them eight times. The food is indescribable and I love sharing a room with a stranger. You should try it!)

Can’t the doctors do anything for you? (I’ve never asked)

You better not overdo it. (Just waking up today hurt)

You can have just a little, right? I mean, it won’t kill you! (Says the person who won’t be up all night in the bathroom crying)

You cry in the bathroom? Why? (No, of course I don’t cry. You can’t prove it.)

You make it out to be such a big deal. (Usually said by someone you haven’t talked to in weeks)

You know, when you get sick, it’s hard on all of us. (Like that ball of guilt will help?)

You can go, it’s just at their house. (And its always comfortable to ditch a small gathering for a half hour and kill another persons bathroom. Hope they have a fan, toilet paper, patience, sense of humor, everyone pretending you didn’t just do that)

Wow, you are still upbeat about it all! (Yes, I’ve found that kicking a toilet and screaming really doesn’t do anything good. Humor is my only defense)

My uncle only flares up when he’s stressed. (Either he is flaring all the time or he’s a monk)

Maybe getting crohn’s is a blessing. (Well, I do do a lot of praying – please please stop, I just want to rest)

When was your last flare up? (When have I ever not been flaring?)

You can’t have crohn’s and colitis. Only one or the other. (Really? Can you send that memo to my gut? Here’s the mail chute)

How do you handle it? (I don’t. It takes everything I have got to hide the pain, pressure, guilt, fear and anger I am feeling.)

You seem fine. (Then my acting has improved)

It will get better/easier. (When?)

Can we go on the trampoline? (The things we do for our kids!)

Yes, crohn’s suck. Any disease that causes pain and discomfort is horrible. The guilt alone that we face when we feel we are imposing on someone or causing disappoint eats us up. Like the disease. A good attitude really does help. (Insert eye roll if you’d like, but it really does)

When I was first diagnosed, I really lost all hope. I was sick non-stop for months that turned into years. It wasn’t anything like my mom’s crohn’s; or your aunt’s, his mailman’s, her dog. It was living hell. Trying a new medicine every couple of weeks only for it to fail and my hope would fall further. I spent so much time in the hospital, I knew which vein could last more than 12 hours, I knew the tricks for getting the better night nurse, heck, I could have set up my own IV and med machine. In fact, I already could disarm those blasted alarms. What I couldn’t do, is know what worked. What could I eat without dying afterwards? Why did action “a” only sometimes equal reaction “b”? It changed every flipping day. I swear, crohn’s is this spazzy little kid high on sugar bouncing from one thing to another, tearing down the walls and cackling. I’d go left, it went right. I’d make a play to get a handle on it, it would duck and hide. I could run, but it always caught me. It could run, and I’d never get close. It felt like I was battling myself in some epic sci-fi war where only one of us would come out alive.

Some nights, I let the crohn’s win. Some weeks it would win. I got depressed. I got angry, at myself. I was disappointed, in myself. I felt ripped off. I wasn’t sure if I wanted to live a life with crohn’s. Then, I would turn it around and feel strong and feisty and ready to fight. Repeat and rinse.

Everyone said it would get better. I’d understand it more as time went on. I’d get it under control. After a few years, I still didn’t believe these Pollyanna types. Then, it changed, just a little.

I finally understood. Crohn’s Disease is only two words; not a sentence. It was some I had, it didn’t have me! I could beat this thing. Then I would flare and doubt would sink in again.

This would go on and on until finally the remission times between flares would be just a tad longer than the last time, allowing me to get that much stronger than before. Finally, I might be feeling pretty good for a couple months at a time. During that time, I’d have a positive attitude and feel like I won. When I flared, it would take more than a couple bathroom trips to knock me down and even then, it wouldn’t put me completely out of the game. Time did go on and it really did get better.

My crohn’s didn’t ever really improve. Sometimes a medicine might work or I wouldn’t flare for as long or as often but it basically stayed the same. It hated my guts and I wasn’t too fond of it either. However, the way I looked at it, my disease, did change. I couldn’t let it define me, control me, beat me.

I make jokes, like most crohnies. I deal with other auto-immune disease, like most crohnies. I struggle and adapt and keep moving one foot in front of another, like most crohnies. I research it more than any doctor I know, like most crohnies. I know medicines better than a pharmacist, like most crohnies. That’s when I understood, I’m just like most crohnies….except what works for you, might not work for me and vice versa. But we will try anything. Us crohnies, are a gutsy group.

So, keep your chin up. Face this flare up with smile. Sit on your comfy toilet (isn’t it sad we know toilet brands and features as well as a plumber? Oh, I do love the extra tall ones, and your seat is much nicer than my current one) and get stronger. Use humor when you can but cry if you have to. You do deserve special treatment, only it’s up to you to give it to yourself. Don’t overdo it, and don’t feel you have to explain yourself to others. If you can’t do something, just say that. Don’t feel you have to give reasons or excuses. You just can’t or don’t want to. Let the other person deal with it. Eat what you want when you can. Enjoy your life in any small segment you can. Even the worst crappiest days ever, can be dealt with if you don’t pile on the self guilt. It’s hard but I think that’s what people mean when they say it gets easier. The disease stays the same, gets better, gets worse but how you look at it and deal with it, does change.

Stay positive (when you can) and go kick your own ass!

Real Crohnie – Real Struggles

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I had already had several really bad stomach cramps. I had already pooped my pants in public. I had already spent hours and hours in the bathroom. I finally learned I had Crohn’s.

I did what I would advise people not to do. I looked up Crohn’s on the Internet. This was 1998 and I had limited knowledge of the web. Being exposed to pictures showing the worst of the disease was really not something I should have been looking at during work hours, well, ever! Don’t do it. Don’t look up some medical thing, especially images. Yet, we’ve all done it. And we’ll probably do it again.

So I sat at my desk and cried. Why I looked it up is still a mystery for me because I had grown up with a mother who has crohn’s. I already was familiar with the disease. Yet, when the doc scoped me and said it was the worst case of crohn’s┬áhe had seen and asked me how I was dealing with the pain, I freaked out.

My mom had been in the hospital twice when I was growing up. I knew she had to be careful with what she ate, she got tired easily and sometimes took pain meds. I also knew that she spent a long time in the bathroom. Even though she deals with it on a daily basis, she has a mild form of the disease. That wasn’t my case.

Within a few weeks of finding out, I had my first two week stay in the hospital. Immediately, the docs saw my case was anything but normal. I went anaphylactic on meds, I broke into rashes, my IV had to be changed every 12 hours, I absorbed pain meds like a junkie, and nothing seemed to want to work.

After 30+ hospital trips, featuring several different hospitals in two different cities, I can honestly declare that hospitals suck. Once you can eat, the food is gross. The nurses range from rock stars to “oh, man, please not her again”. Guests either never show making you feel lonely or stay too long, turning you into a hostess. It’s just rough on everyone.

I was the first person at my Oregon hospital to try Remicade, which had been approved for use only days before. It worked great….at first. Like all good crohnies, what works at first, might not later. Remicade worked well but I still had to take handfuls of other meds as well. In fact, I took meds to help with the side effects of other meds. Handfuls.

Around this time, working became impossible and I struggled to stay out of the hospital for two months at a time. Always staying at least two weeks, and once a whole month. Lots of people ask why? Fluids, pain management and usually high doses of steroids (fun fun).

This was before docs knew better than to prescribe 120mg of Prednisone, so I got slammed. I gained 80 pounds despite being unable to hold down food. I never slept. I got depressed then I went psychotic. I’m not proud of what I put my friends and family through, but I also totally blame the meds. After a couple of months, I was dropped to 100mg and stayed at that dose for a couple of months. Doctors misdiagnosed me as bi-polar because that amount of steroids was wrecking havoc on all aspects of mental functioning.

Meanwhile, I’m on this med and that med, getting Remicade transfusions and still visiting the nurses at the hospital every couple of months. My husband struggled with it but stood by me. In fact, he would come home on his lunch breaks to make sure I’d take my meds and get me some lunch. He’s so incredible.

My friends all but disappeared. After I bailed on plans, missed parties, couldn’t commit, backed out of promises, no one wanted to be friends with a sickie. I can’t really blame them yet, to be honest, I totally do. It’s hard to stay friends with people that only want to be around during the good times and split as soon as the admission papers are signed.

It was hard on my mom. She knew about Crohn’s in her limited experience and couldn’t understand why nothing that worked for her, would work on me. Oddly, during her third major flare in 30 years, the doctors removed some of her gut and she’s been great since. I say oddly because in all my battling, surgery was only mentioned once and not in a positive way.

Perhaps, surgery isn’t an option because the more they scope me the more complex my case becomes. I have crohns, but I also have colitis. I might have celiac disease but nothing has been conclusive. I also deal with all the crap those with autoimmune diseases deal with, fibromyalgia and symptoms that mimic other diseases. My disease runs from my mouth to my anus. I get mouth sore, nodes on my legs and bruising so bad, my husband begs me to wear long sleeves. (He has never ever put me in a box and tossed me down a hill, it only looks like that could have happened) I also have different doctors than my mom.

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I found out I was pregnant only a week after a dose of Remicade. I was scared. Some doctors warned me against carrying my surprise baby to term. Others said I was safe. I believed the latter. At 7 months pregnant, our little girl stopped breathing in utero and died. While its rare, I can’t directly blame the medicine either, but I totally do. I gave birth and promptly had the worst flare ever. A month long hospital trip was my prize.

Very quickly after I got my strength back, we tried for a baby. We hadn’t been ready, but losing my angel changed that. We got pregnant fast but my past miscarriages and then the stillbirth taught my not to count any chickens before the eggs were hatched. Like the pregnancies before, everything went smooth – except it was hard to control my anxiety at times. In 2002, I gave birth to a healthy baby boy. And I stayed in remission!

After 10 amazing months of motherhood, I flared. They tried Remicade and it failed. They couldn’t give me high doses of steroids because I had developed Addison’s disease and my adrenal glands no longer produced cortisol so I take low doses daily. (Thanks first GI, hoped you learned from that little oopsy) We had tried experimental, traditional, basically anything ever suggested as a possible assist, we tried. I’d either be allergic, it might work for a few weeks before failing, or it never worked from the get go. I was hospitalized in a city 100 miles away from my baby. That was crushing.

After several more hospital trips, I got serious with my docs about limiting my meds and tried to make some significant strides. I had felt awesome when I was pregnant and not on any meds, yet felt like crap when flaring and placed on handfuls of drugs.

Some of my doctors are forward thinking, others like to play things safe. About 8 years ago, I tried TSO. That’s pig whipworm eggs. I’d digest them and they would hatch in my gut. My body would then fight them instead of itself and then after a few weeks, expel them and I’d start over again. That was the plan anyway. The vials came from Germany and were ridiculously expensive. I had to get so many approvals from places like the USDA, prove I wasn’t a pig farmer and so on. so when the FedEx guy tossed the package of glass vials on my porch, I prayed none broke. A program called, From Beyond, filmed me and my family for their Discovery Health show. It was an exciting time, I felt I had beat the odds. Then I flared again. And again.

Getting the Addison’s part under control helped a ton. Everything started to smooth out slowly. I was finally feeling better and wasn’t on a ton of medicines. I had a nice couple of years where everything was in a nice moderate stage. Nice. Then, boom, when Crohns wants to come out and play, it does. My crohns happens to be a spaz.

Last fall, my health went from pretty good to horrible in one day. All of a sudden, nothing stayed down. I threw up everything I tried to eat, spent hours rushing to the bathroom dozens of times a day, my body hurt. I did as I was instructed, except I wouldn’t go to the hospital. Flat out refused. I could push my on fluids, I didn’t want to rely on pain meds this round and I can’t take high doses of steroids so really, anything the hospital would do, I could do. It took tons of help from my husband and son to stay at home. They pretty much catered to my needs as I laid in bed for a couple of months.

I missed out on school events. I pushed myself then would slide backwards. As the holidays approached, I panicked and faked feeling better. Us, crohnies, we fake feeling better so well we really deserve an award. My health suffered and I lost tons of weight.

My husband has always been a yo-yo bouncing from one extreme to another. He had let his weight go and was eating really poorly. As a result, our son was eating only junk while I was still struggling to hold down jello. At the beginning of 2013, my husband went into a huge health kick. One that looks promising, like it might be a forever change, for real this time. (You can read about our story and his 70+ pound weight loss here: http://wp.me/p3CR61-1t)

I decided to once again, not follow doctors advice. Another thing crohnies get good at, practicing medicine without a degree. My GI has always suggested a bland, all white, processed diet; especially while flaring. I decided to eat healthy; fresh foods, fruits, veggies, basically everything off the do not eat list.

At first, my gut flipped out. Then again, it hadn’t really ever stopped flipping out since the flare began in September. I pushed through and my gut adapted! Soon, I wasn’t cramping as bad after meals. I was, but a normal amount. I was still going to the bathroom over a dozen times a day, but that has become my normal so food wasn’t really effecting that, negatively or positively. Then, I really ticked off my docs. I decided to come off some of my meds. For the first time in a decade, I was off my pain meds, off anything “extra” and off anything I didn’t think was helping.

I can’t say I’m in remission right now, but I’m also not in bed crying, or rushing out of a store with poop in my pants. I’m more active than I have been in the last nine months. I’m happier. I’m eating all the things the doctors stay not to eat. My doctor knows and is hesitant but I think she’s still mad that I refuse to go to the hospital, even for a scope and that I love to play doctor and make whatever changes I want. She’s dealing with my rebelling, I’m sure she would get along with my parents.

My husband has stopped eating all animal products and I call him vegan, he says he eats an all plant based whole food diet. Same dif. Now, I’d do that far and slowly I am trying. I know meat isn’t the easiest thing to digest and if I was trying harder to get my crohns into remission, meat and dairy would be some of the first things to go. But, I’m picky. I’m so picky that picky people make fun of me. I’m so picky, the idea of trying something new scares me. I run to the bathroom, ok, only to hide but still….what if whatever I try is so gross, I puke, on the table, in front of everyone??? What if…..

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I’m trying. I’ve been cooking and baking vegan recipes for my husband, Mr Vegan, like the one pictured above. (That’s @Engine2Diet Mac not Cheese, and one day I hope my plate will look like that) I’m trying it all to encourage my son, Sir Picky to try it as well. I’m finding I like some of them (beans, huh) or at least I can hide it in a salad (kale please pretend you are green leaf) Although, the concept of hiding yucky food in yummy food doesn’t really work on me since I’m the one cooking it. Even if I didn’t, I’m pretty sure I could spot a pea hiding in my noodle.

As I try to train my taste buds and get brave, I’m blogging. I’m hoping to share recipes, share my stories, learn from you and share what I have learned. Mostly, I’m hoping this crohnie will one day soon, become Mrs Vegan, for real.