Fall Is Here!

Fall is here! I absolutely love fall and everything it stands for - especially here in New Hampshire. The leaves change colors, pumpkin flavored everything is out, I can whip out the boots, sweaters and scarves; it's a great season. The only thing I'm sad about this year is all of the food I can't eat at the fair! (I'm going tomorrow). I love fair food. But let's list my favorites: caramel apples, popcorn, blooming onions, fried dough. Basically all things that will send me straight to a disgusting fair porta-potty - gross. Le sigh. I refuse NOT to have fried dough though. Tell me how can you pass up greasy deliciousness covered in cinnamon and powdered sugar? You can't would be the correct answer. Good thing I have this trusty card:

...not that I've ever had to use it, but it does make me feel better when I go places, just in case.

In other, unrelated news, I was hoping that as I tapered off the prednisone (I'm down to 15 mg now!) the symptoms would go away, but that seems to not be the case. Especially the hot flashes - I feel like those have only gotten worse! This is me every day:

Luckily for me, fall is that wonderful time of year where my office has turned the heat on, but the air conditioner is still in the window, so I can just switch back and forth as my middle-aged-woman acts up.

The Art of the Fart

I started this blog off easy, letting you readers get to know me and my thoughts in a polite, socially acceptable way. But, this is a Crohnie blog, so at some point you had to imagine it would come to this. That's right, it's about to get pretty real over here.

My question is, why are natural things like farting such a social fo paux? Ok, I know there are many answers to that, and many people screaming at their computer screens "Because it's gross" yadda yadda, and for the most part I guess I have to agree with those. But hear me out. People have turned belching into competitions - male and female. Many people can belch on command and this is a proud skill they have! Oddly enough I've never been a belcher. And when I say never, I mean on the rare occasion that I do mutter a small burp, I shout at anyone who is with me "Hey! Did you just hear that?!" To which they normally reply no and look at me strangely because my burps, when they do occur, are really that weak. But farting - if you were to really let a loud one loose, no one would be smacking your back going "yeah, dude" - they'd give you a weird look and probably mutter something like "Aw, really?" Why is this?

Let's compare the two.

Belch: verb - to eject gas spasmodically and noisily from the stomach through the mouth; eruct.

Fart: verb - to expel intestinal gas from the anus; to break wind.

I suppose more people are comfortable with mouths than anuses. But stomach gas vs intestinal gas? I guess maybe it is in the eye of the beholder. Honestly I think belching feels gross. I don't like to re-taste my food. Or if I did, that's usually not what comes back up. It comes back up a strange, shifted version of what I ate - ew.

In personal conversations I've had with people, I also get the impression that expelling air from one's body in either direction provides relief in many situations when one feels built up, uncomfortable, or in pain. I have lots of friends who eat a big meal and maybe something didn't settle as they thought it would, and they turn to me and say "Hold on I've just got to burp and I'll feel fine." So for all of us with digestive problems, it seems we've gotten the short end of the stick because if we release this pain, it can lead to an embarrassing situation. No one turns to you and goes "Hold on I've just got to fart and I'll feel fine."

Before being diagnosed with crohn's I'll admit, like I'm sure every single person out there has, (don't lie about it) - I used to hold such things in. I went along with the social fo paux of farting. But after being diagnosed with crohn's I have to say, if you hold it in, it makes the pain stay longer, which is not a good feeling, and with crohn's usually just creates a domino effect of bad feelings. And I get it, I don't really want to be around people "breaking wind" constantly either. I'm not advocating that I want to be that disgusting girl sitting next to you letting them rip as I please, believe me, I don't consider myself to be that obnoxiously gross of a human being (especially of the female variety). I'm just saying, if it happens, it would be nice not to be criticized so extremely and made to feel bad about something I can not control.

So, I've devised the art of the fart in my crohnie experience. It's not really rocket science though, I just want to be an advocate for people with IBD out there to not let yourself sit there in pain! If you're walking around with people, hang back, don't lead the way. Ok, if you're at a movie or another quiet place, perhaps you should just "go to the bathroom". And yes, if you're on a first date, probably not the best choice. At a dance party, be that sneaky ass hole who moves to the other side of the floor, farts, then moves back to your original dance spot. But my main point here is, farting should be no less worse than burping (unless you produce an odor in which case, I'm sorry I can't help ya there...Perhaps you could just wear the sign below).

So if you let one out on accident, don't let people make you feel bad about it! Stand up for your condition and say hey, I've got issues all up in my digestive system and I can't help it. Like you've never farted before?

And just laugh at yourself, because if you can't do that, no one can laugh with you.

A Thank You Note

I meant to write this quite a few days ago, but I got in a bit of a fight with an avocado, in which the avocado won, sending my knife through the pit and into the palm of my hand - 3 stitches, so now I'm typing mainly with my right hand and the ring finger on my left. Fun thing about injuring yourself as a crohnie? I'm on so many immunosuppressants that for precaution, they put me on an antibiotic just because my chance of infection is much greater than that of a "normal" person. Also, it will probably take twice as long to heal. Oh well.

Anyway, I wanted to write about support systems, and how grateful I am for the people in my life.

Technology has unleashed a new way to connect with people. Through Crohnology, Crohns Forum, and Twitter, I have been able to connect with so many fellow crohnies, which has been phenomenal. It can be hard to be sick on the daily when no one around you knows truly how you feel. Even just simple days where I just feel tired, it can be hard to explain to those around you, or rather, it can be hard to complain to them.

I do have to admit, though no one I surround myself with regularly has Crohn's Disease, I have been blessed with a fantastic group of supports, that I can only hope every fellow crohnie has. My family and friends have all taken on the burden of worrying about me when I am with them (without treating me like I am "sick" - very grateful for that tidbit) and being there for me. Most importantly, I have to be appreciative of my boyfriend, whom I spend most of my time with, thus he gets the grunt of the disease. He gets those moments where I wake up feeling in pain and defeated, so sick of crohn's and medications that I just break down crying, and simply holds me until I calm down a bit, and then forces me to delve into an activity, knowing just lying in bed is not going to make me feel any better. I know those times are hard for him. It's hard to know what to say to someone when that happens, but he handles me perfectly. He has been the definition of patient and understanding and I honestly don't know what I would do without him. To all of my fellow crohnies I hope that you too have found someone that can handle you at your best and worst through dealing with this disease - not just significant others, maybe a parent, a best friend, a sibling - no matter who, I hope you have a someone, because even with all of my distant online friends, there is nothing to replace the comfort of having someone comfort you when you need it.

Learning to Relax

Ever since I was young I was not one to let the world just whiz on by. It's a busy world we live in, filled with so much to do, both fun and necessity, and I was programmed to accomplish. As soon as I was old enough to have a "schedule", it was always booked. Sports, school, countless other extra curricular activities, work, friends, family, etc. It wouldn't be until late in college that I would realize, in a way I was addicted to the stress that formulated from keeping such a jam-packed lifestyle. Since it was always the way I had done things, I grew accustomed to being very busy, and not being busy actually became anxiety provoking.

A lot of people with Crohn's Disease develop issues with anxiety and depression. There are many links between the two, from vitamin deficiencies, to drug side effects, and just the fact that Crohn's is an autoimmune disease, placing its patient's bodies on red alert constantly. But do patients develop anxiety from their condition, or is it preexisting? Reading posts from the online Crohnie sites I'm on, it seems pretty evenly split among my peers, which honestly seems about right to me. Even as someone with preexisting anxiety, it is obvious how Crohn's can easily effect ones mental stability (Have you seen the "I have Crohn's Disease and I'm always searching for the bathroom and worrying" commercials?). Turns out, those are actually true. If you're reading this, have Crohn's, and have seen those commercials, I guarantee your reaction was the same as mine the first time you saw them: "Heh, yeah I do that." The funny thing is, however, is that I'm not writing about this topic to complain about anxiety from Crohn's. In a completely opposite, perhaps shocking, direction, having Crohn's has actually helped me learn to relax.

Let me preface by saying, of course, if you're in the middle of a flare, and having constant issues with needing to run to the bathroom, yes, anxiety will run above average any time you leave the confines of your home. For example this weekend I went to a concert, and was stuck trying to exit the parking lot for OVER an hour. I kept picturing needing to run out of my car to the bathroom, fighting off drunk tailgaters and being trapped in a disgusting porta-potty. Thankfully, that didn't happen. What I want to talk about though, is daily stress - something I am too familiar with, and which a lot of the times is self inflicted. I am that girl. The spazzy, secret control freak. I don't have to control everything in my life, but I need to have the knowledge of how things are going to go. I work well with plans. I get upset when I pictured something a certain way and it doesn't happen. It has taken me a long time to be able to admit these flaws about myself, and honestly if it weren't for Crohn's I might still try to pretend I wasn't like that.

Crohn's has definitely, if anything, taught me to be comfortable with me (or at least to be better at being comfortable with me). Yes, I've always read quotes along the lines of "accept the things you cannot change" and other nonsense about not being afraid to be who you are. And I would say that I did those things out loud, while secretly not accepting, and being completely afraid to show who I am. But over the past few months, as I started to have more trouble with my Crohn's symptoms, something clicked. My self-induced stress addiction was causing me more physical pain than anything. That app I have on my phone (GI tracker) lets me log my stress levels, and there is an extreme correlation with high stress levels and higher pain levels. Of course, as they told us at the beginning of every Psychology class I took in college "Correlation does not mean causation". Even so, it still says something.

So, I have a new "let it go" mantra I'm trying out, which is actually pretty amazing. By focusing in on what causes me stress and trying to talk myself away from it, my moods have been more stable, and I simply feel... calm. Not to say I don't have my moments, because I am far from perfect, but I feel as if this is a step in the right direction (and I'm sure the people I surround myself with will greatly appreciate it).

I just find it funny sometimes what it can take to make us realize some things.

Alternates Please Step Forward

There are three things that I've had to give up completely since becoming a Crohnie that I just get cravings for because I love them. Popcorn. Beer. Coffee. These are things which all have alternatives, but yet can not be replaced. More so I'm going to focus on beer and coffee, because if I talk about popcorn I will just be too sad - there's just no suitable replacement.

Moving forward. I love me a glass of wine or a fruity cocktail any day, don't get me wrong, but sometimes... sometimes the situation just calls for beer! Sports game? You look like a total snot drinking a glass of Pinot Noir. Country music concert? Beer just feels more... right in your red solo cup. Same goes with caffeinated beverages. I love me some tea all day everyday, but sometimes the day just calls for a good ol' cup o' joe.

I should pause and back up, and mention that I am very grateful for the fact that my stomach is upset by the acidic content of coffee beans, and not the caffeine, because if it were the caffeine (which seems to happen to a lot of Crohnies) then daily rituals as I know them would cease to exist. Plus, that would lead to taking away chocolate which, lets be real... can never happen. I am also grateful that I can drink wine, and small amounts of liquor if I would like. Not drinking alcohol is also fine, but hey, I enjoy it from time to time.

Anyway, the thing about beer and coffee, is that sometimes you just can't replace their taste, or the way they fit into a social setting, or certain types of weather. Fall is upon us! And what are some of my favorite things about fall? Beer and football! Apple crisp and pumpkin coffee! Wah, why Crohn's must you take away these cozy comforts?!

So, all summer it has been a battle of my wits to say no in certain situations to either beer or coffee. But thankfully with trial and error, and some late night browsing on the internet, HUZZAH! I have found some 'almost-solutions' to my beer/coffee fall cravings that are starting to emerge as the nightly temperatures slowly drop.

Beer: replace with cider. It's apply and delicious, looks like a beer, and is cheaper than liquor or wine, so levels out on even with beer. If I really want a taste of the real stuff, I'll just have a sip of someone else's to satisfy.

Coffee: when really craving something other than tea, I can go for the espresso! Luckily, I have no issues with milk, so I can at least go the "cheaper" route with Dunkin' Donuts instead of a $6 grande at Starbucks (yipes). I'll have to figure out how to do this at home eventually. Anyway, I found a bunch of articles and information about how espresso actually has less acid and caffeine, so it is a win for my stomach but I can get that coffee taste I crave so badly! I included a quote from one site below.

Drink espresso. While espresso and espresso-based beverages taste stronger than drip coffee, they actually have less caffeine and less acid than coffee brewed by methods that take longer. It may be that even though espresso is brewed with hot water, the pressure pushes the water through the coffee grounds fast enough to avoid extracting the harsh chemicals responsible for kicking your stomach acid production into hi. (http://www.talkaboutcoffee.com/low-acid-coffee.html)

I purchased a pumpkin latte on my way to work the other night, as it was cold and rainy and fall-feeling. Mmm, I felt so indulgent.

Roids.

A couple of months ago, I was having quite a bit of trouble with my symptoms, leading me to go see my doctor and have a sigmoidoscopy done, which reported back a pretty badly ulcerated colon (fun times). So, for a little over two weeks now, I've been on prednisone... And this, is my vent point.

I was put on a steroid when I was first diagnosed, but it was entocort. I had no symptoms with entocort, and was on it for about a month. Prednisone however, is THE WORST. I mean seriously, Crohn's has already turned me into a 50+ woman, carrying around my weekly pill sorter and checking for bathrooms every which way I turn, but now I feel as if I'm a menopausal 50+ woman. Let me remind you, I'm twenty-three. 23. I get hot flashes. I exhaust easily (which is partly just Crohn's anyway) yet I need to take melatonin to stay asleep. I get this dull ache behind my eyes. I'm a wee bit moody at times. And this probably isn't anything menopausal, but I can't stop eating! That last bit was good at first, since for the two months prior to going on prednisone, I had begun to wither away, but I don't think my bank account wants to support the fact that I'm literally never full. And it's hard because when it's not really a meal time, I tend to gravitate towards food items I probably should be avoiding, stuffing my face with items that will claim payback an hour and a half later.

Oiy.

Technology is great.

Short and simple post today.

Last week I got a new phone (yay!). I had a blackberry, and have now upgraded myself to a probably-too-fancy-for-me Samsung Galaxy SIII. A) It's huge. but B) it's fantastic. I had gotten the blackberry just as the rest of the world became obsessed with their iPhones, so all of these touch screen easy to use apps are blowing my mind. And thanks to following some key Crohn's organizations on Twitter, today I read an article about the best apps for #Crohnies!

If you'd also like to read: http://www.healthline.com/health-slideshow/best-iphone-android-apps-crohns-disease

I downloaded two of them for now: GI Monitor and Bathroom Scout. The bathroom scout will truly be tested only when I go somewhere other than work or home, so I'll keep you posted on how I enjoy that one, but so far after less than a day with the GI Monitor, I am feeling good about that app.

It's so hard to keep track of every little thing you eat and drink and try to put together what is upsetting you and what is not. The app allows you to input food, BMs, if you miss medications, and even your stress and pain levels and keeps a diary for you. It also has a social aspect of it which I have yet to explore, but I see a lot of people communicate through it to share their crohnie woes - always nice to have some venting outlets with those who truly understand.

Fingers crossed that this app will make me more of an organized crohnie, especially with my self control issues that I've mentioned, maybe it will cause me to buckle down on the bad stuff!

Busy Weekends = Busy Tummy

When you're in your 20's, at times (I hope) you have some exciting weekends planned. I just had a fun filled weekend - attending a 6 hour country fest concert with one of my best friends, followed by my little sister's 21st birthday the following day. Granted... these fun things all point to danger for one's stomach when dealing with Crohn's.

The motto I went with? Do the best you can, and face the consequences of your bad choices.
Was this the best motto I could have gone with? No. Obviously the best motto would have been: Enjoy yourself but don't stray from your Crohn's friendly diet.

I have bad self control.

Like I've stated in previous posts, until being diagnosed with Crohn's, I wasn't one to have to "watch" things. Eat, drink, and be merry. Fried food satisfies, even if you go dancing after. Actually, I would say I did much better at the concert than at my sister's birthday celebration, and neither was per choices of alcohol. I have experimented with alcohol limits a bit since my diagnosis, and know that it is simply not a good choice. One liquor drink is about all I should have. I can have a couple glasses of wine and be ok. Beer is just a no-go.

Alcohol is pretty easy to limit myself on. Basket after basket of corn tortilla chips at a Mexican restaurant dipped in onion/spice filled salsa however? This is a completely different story. The dinner I ordered was fine - lean chicken with a tequila lime sauce and a side of rice - no beans, no peppers or onions or corn tortillas. But while you're waiting, they just keep bringing the chips. I LOVE THE CHIPS. How can you not? They're warm, and salty, and their salsa is delicious. I have labeled myself something of a child now after this lack of resistance. And indeed, it led to a downfall later in the evening (which probably wasn't helped by the birthday cake and apple I ate) - but I bet if you took me back to a Mexican restaurant tomorrow, I'd eat the chips all over again.

I guess I'll keep working on this...

Don't Be Consumed by Your Disease.

I'll be honest about my secret love of cheesy TV. Anything on TLC is usually A-Okay in my book. Feel good shows, with people being people and accomplishing things, large or small, or just being themselves. A lot of these shows have a hidden theme in them that seems to emulate through each week's featured character - no matter who we are, we are human, we have struggles both apparent and hidden. We have struggles we might not even know we are having.

Take "What Not to Wear" for example. Sure, Stacey and Clinton rip people apart for their lack of fashion, but mainly for their lack of appreciation for themselves. Somehow there is always an inner issue unleashed through the simple process of what you choose to wear. Many times it ends up that the lesson learned is taking time for yourself, and when you can do that, you can be a better person, the person you're trying to be for everyone else in your life.

Thanks one of my best friends, today I had a "What Not to Wear" moment. Her mom owns a massage salon (See tag below, if you're from NH), but is trying to incorporate a brand of makeup, custom fitted to your skin by this chemist of a woman. Honestly, it was over my head; I've always had a sense of girly in me and embraced it, but never got into the fancy terms of makeup of hair care products, etc. I wasn't even going to have the foundation made for me, but my friend's mom insisted, handing me a towel and some face wash to take away my $5 Walmart paint job. Then I sat in the chair and had my personal skin tone concoction whipped up for me: one tablespoon ivory, a dash of red, a dash of yellow-orange, a pinch of bronze, etc. Once the perfect mixture was made she applied it to my face and started the same process with the powder. After looking in the mirror, it was like when they spin that chair on "What Not to Wear" during the makeup session. I'll be the cheesy spokes person, I'm fine with that - I've never had makeup look so natural. It felt... dare I say this about myself... pretty.

Most importantly, for a small window in time, I was doing an activity that made me feel good, that unleashed a stress I hadn't fully realized I was having. Turns out focusing on your stomach all day - what to eat, when to eat, how much to eat, mixed with the anxieties and anticipations of the body's response to whatever it is you choose, weighs down on you a bit. And when you let everything weigh down on you, the stress causes more problems for your bowels, and a viscous cycle begins.

So let's all promise ourselves to be cliche. To be selfish at times. To dare to do things that take our mind away from the cramping, the pain, the worry, and the fear.  You'll thank yourself.

To Eat or Not to Eat?

Allergic to peanuts? Don't eat them.
Celiac Disease? No gluten for you.
Lactose intolerant? There's a pill for that.

Crohn's Disease? Your new life mission is finding food to eat. No definite guidelines, no magic pill, no list of toxic foods. I'm not trying, by any means, to reduce the issues of people with the other examples I listed above - I have friends who fit into all of those categories, and it can be hard. But Crohn's seems to be a different struggle.

Even trying to be an active part of The Crohn's Disease Forum (a very helpful site I might add!), reading through the advice of Crohnie's world wide, young, old, recently diagnosed, and veterans, there is no real answer to help with this quest towards tolerable food. You are essentially on your own.

Everyone with CD is different. We all have CD in different parts of our Gastrointestinal systems. Mine is mainly located in my colon. Everyone has certain foods that are safe, and certain foods that are seemingly toxic. It's all about controlling inflammation, which can be difficult when your body is attacking itself.  So I suppose it is more like avoiding food items which tend to aid in inflammation.

So. What to eat? It is the question I ask myself every day. And for a girl who had been eating whatever she wants her entire life up until this past year - it's hard! Ok ok, I was lucky. I was athletic and blessed with a fairly good metabolism. I was very healthy with my choices, but could also indulge in my overactive sweet tooth, and let carbs be my best friend. These days, sometimes just looking at food is a turn-off. It's as if the fear of the consequences of said food item pushes me to just not want to eat at all. Things that are definitely bad? Raw veggies. Not even raw actually. Sometimes even the not-cooked-enough-to-the-point-of-mush veggies don't sit well. If you had asked me 3 years ago if I ever thought I'd say the sentence "I really just wish I could eat salad instead of this bowl of spaghetti" I probably would have laughed in your face.

Another point I've learned recently: READ FOOD LABELS. Processed foods are generally worse for you, we know this. But sometimes, I find I revert back to my old "I can eat anything" self if I'm having an ok day, without thinking. This became a problem a few hours after I housed an entire bag of cheese puffs. The main ingredient of cheese puffs you might ask? I always avoided that question - they're just cheesy styrofoam right? Wrong. Corn meal. CORN. Corn. corn. For the one main item that I need to keep out of my diet, you sure do show up in just about everything.

Le Sigh. Just another day.

Keep Calm... Fight Crohn's

If you are reading this and you have Crohn's Disease, you can probably skip a few lines. If you are reading this and have just been diagnosed, or a loved one has recently been diagnosed, then perhaps don't skip the next few lines.

I was diagnosed with Crohn's Disease a little over a year ago, just a couple of months after graduating from the University of Rochester with my bachelor's degree in Psychology. In celebration of this momentous occasion, my family took a trip to Italy immediately after I received my diploma. Then I started to feel "funny". I was having extreme stomach pains after eating most things. I needed to go to the bathroom often. I felt tired (I was always a very athletic, active person, so by tired, I mean out of the ordinary, lethargic). I tried to hide most of these symptoms, figuring I had some sort of bug, or that my body was just adjusting to both being in a new country as well as not drinking every night for a straight week, which is what happens before graduation. My family thought I was having some extreme heartburn....

For some reason, I didn't think heartburn would cause you to have to stop in your tracks and take a breather until the pain went away.

It wasn't until weeks after my return to the States, and about ten pounds of weight lost that I finally went to the doctor. My 22 year old self was ordered a colonoscopy, and by July it was announced that I had Crohn's Disease.

You may be wondering why I've waited a year to write about this experience. Call it naive. Call it hope that this wasn't going to be a permanent burden. Either way, it's taken me about a year to realize this problem is not going to subside in one foul swoop of over the counter meds.

When first diagnosed, I was told my colon looked fairly bad, but that they were going to attack it with medicines, and hopefully that would help with the inflammation. I was put on Enticort, Imuran, and Remicade. One steroid, and two heavy duty immunosuppressants - one in pill form, one IV treatment every 8 weeks. It wouldn't be until recently that I discovered that these medicines are actually some of the best treatments found for Crohn's. Because up until recently, these medicines seemed to have been working just fine.

This blog is to serve whomever can get anything out of it. In writing it, I know it will help me work through the ups and downs of being a "Crohnie". And if you happen to stumble upon it, perhaps you will gain something from it as well, whether you are a Crohnie too, or know one, or just have some weird fascination towards this awkward disease to discuss.