OM NOM NOM (Foods post, part 2)

As I sit here enjoying my mother's frosted sugar cookies, I'm reminded of how lucky I am to be able to be sitting here... eating my mother's frosted sugar cookies. To most people, eating simple foods is just second nature. It's a part of life. Hungry? Grab whatever's available. It's not so easy for a Crohnie to just grab-and-go, unfortunately. We have to analyze, consider the risks, and bargain with ourselves over every single bite we take.

As promised, I am posting a list of foods that I, personally, can enjoy with my Crohn's, usually without any problems. (For part 1 of this topic, click HERE) But, I want to make it clear that every Crohn's/UC patient is different - what one of us can eat could send another of us to the hospital. So, this list is purely from my own perspective, and maybe it will help other Crohnies discover some things to try.

YAY FOODS!:

• Pasta - regular pasta is best for me. The whole-grain type gives me far too many problems. Anything from spaghetti to macaroni to bow-ties. YUM! I have to make sure it's fully cooked and soft (al dente is too hard to digest), and I really love it with just some butter and cheese, or even Alfredo sauce. Red meat sauces are iffy... I try to avoid any meat in them, unless it's meat I've added myself. Plus, the abundance of the tomato acids in the red sauces tends to produce severe acid reflux, so I can only have small amounts of red sauces. I recently started mixing red and white sauces, and it's delicious! 
• Filled pastas, such as ravioli, tortellini, or stuffed shells - If they're filled with mostly cheese, I'm good to go! The ones that are filled with sausage or other meats tend to cause some discomfort, but I still allow myself to enjoy it from time to time. That's the "bargaining" part of our diet... you know it might make you slightly ill, but the indulging might be worth it!
• Seafood - I really love all sorts of fish, shellfish, and even the occasional clam strips. There are a few things I have to remember with these delights: watch for bones!! These can cause harm to anyone, not just Crohnies! And if it's cooked with too much butter or grease, I'm going to be in some major discomfort. Again, I do bargain with myself on seafood, because I LOVE IT. 
• Cooked Veggies - Raw veggies typically send me to the floor in the fetal position within a few minutes after eating them. I now avoid them completely. But COOKED veggies are much easier on the digestive system, and I can enjoy quite a few of them. Some of my favorites are green beans, beets, mushrooms, artichokes, squash (such as acorn squash or spaghetti squash), zucchini, summer squash (the yellow kind that looks like zucchini), and cooked/steamed cauliflower.
• Potatoes - I didn't include this in the "veggies" above, because I think it deserves to be in it's own category. I LOVE potatoes. It doesn't matter how they're prepared. Mashed, baked, sliced, diced, chips, fries, tater tots, boiled... I'll eat them! I garnish my baked potatoes with cheese, butter, or sour cream (or all of the above, if I'm feeling adventurous). I like fries and tots dipped in ketchup, ranch dressing, or even mayonnaise. I loved oven-baked diced potatoes, as long as the spices used aren't too hot or whole. Heck, I will even peel a small potato and eat it like an apple, on occasion! They're so delicious, and they're filling, so for me, it serves as a meal in itself.
• Bread - I choose non-enriched white bread for my diet. Not considered "healthy" by most standards, but whole-grain bread and enriched breads make me very sick. The bakeries at most grocery stores sell Italian or French breads that are perfect for me. They freeze nicely too, so I can stock up. I enjoy making toast, with various items on top: butter/margarine, jam (NOT preserves!), peanut butter, and sometimes even mayonnaise. Don't judge.
• Condiments - I can enjoy small amounts of many types of accessory foods: real butter or margarine (vegetable spreads); smooth peanut butter, including almond and cashew butter - as long as there are no chunks of nuts; jams and jellies without whole pieces of fruit (no preserves or marmalade); salad dressings of all sorts; mayonnaise (I prefer the type made from olive oil rather than eggs); ketchup; A-1 steak sauce; barbecue/BBQ sauce; Alfredo sauce; marinara sauce without meat; sour cream and sour cream-based dips; wine sauces; Hollandaise sauce; maple syrup; yellow (non-spicy) mustard; cream cheese spread. I'm sure there are others that I can't think of off the top of my head at the moment, and I'll revise the post as I think of them.
• Fruits - Probably the most difficult part of my diet is trying to integrate fruits. They hate my guts! I can eat bananas, pears, and small oranges without any problems. That's about it. However, I haven't given up on trying all kinds of fruits! They are all so tasty and delicious, so sometimes I'll "test" them out to see how my body responds. Unfortunately, it's usually a very negative response, and I wind up in bed or on the toilet all day long. *sad face*
• Processed Foods - Fortunately for me, I live in America, where the processed food industry output is abundant and inexpensive. Also, highly controversial. Processed foods typically involve the use of many chemicals not meant for human consumption. BUT... my body seems to be OK with this. In fact, my guts seem to prefer a factory-made, preservative-loaded chocolate cupcake over a homemade one. I've given up on trying to understand it, and I just roll with it. I still eat these kinds of foods in moderation, but sometimes, it's all I can stomach. Especially instant oatmeal. YUM! Or Little Debbie Zebra Cakes. OMG. YUM. Oreo Cookies? TO DIE FOR. Doritos? A must-have. Kraft Macaroni & Cheese? My life support. Banquet oven-ready Pot Pies for 89 cents? I'll eat them daily! Ramen noodles = my go-to meal. It is not without guilt that I enjoy these foods, but they truly are my comfort foods - they do not cause my Crohn's to act up whatsoever... probably because my body can't figure out what to do with all those chemicals!
• Fast Foods - I strongly dislike fast-food, but let's be honest: sometimes, you just need to grab something quick and you don't have any other options. McDonalds is a place I have a love-hate relationship with. I love their breakfast foods, namely the breakfast burrito. It's cheap, simple, and easy on my stomach. It does have small amounts of sausage and peppers in it, but they're so overly cooked and processed that my body doesn't seem to notice. Their lunch and dinner offerings are a HUGE hurdle for me. Their burgers are made with overly-processed meat, so I CAN digest them, but they are so greasy, I wind up feeling terrible for hours afterward. Their whole-piece chicken products (like the grilled chicken sandwiches) are delicious, and I usually do OK with them, as long as there are no veggies on the burger. Big NO to the fried foods, except for their French fries - I can nosh a small handful of those without any problems. 
• Rather than go through each and every fast-food restaurant menu listing, I'll just say that I try to avoid fast food as much as possible. Subway's offerings have been my best bet thus far, but even their "fresh" ingredients tend to make me ill. I'm better off making a PB&J sandwich to go before I leave the house for the day, to eat when I'm hungry.
• Soups - Soups are usually pretty good to me, as long as I choose ones that don't have difficult ingredients. I stay away from soups with lots of peppers or celery, but I certainly enjoy the potatoes, carrots, and barley. Clam chowder is one of my favorites, along with cheesy potato soup, and good ol' classic chicken noodle soup. 
• Dairy - this has been an ongoing roller-coaster for me. Depending on my current medication regimen, I can either enjoy all the dairy I want, or I can't have a drop of it. When i'm on steroid medication for my Crohn's, I become so intolerant of dairy, that it literally comes right back up and out my mouth. But, when I'm not on that type of medication, I can indulge in all things dairy and it's wonderful! I do TRY to indulge in moderation, but lets face it - ice cream, cheese, milk, yogurt - it's all so delicious! I tend to go a little overboard at times, thus making myself sick. But I believe that could happen to anyone who over-indulges in any kind of food. 

I hope my list above will offer some insight into the diet of a Crohnie. Again, this list is NOT going to be the same for every Crohnie. Some patients find that dairy, gluten, or preservatives are their worst enemies. Some can only eat liquid forms of everything. And some even resort to eating ONE type of food every day for the rest of their lives, to avoid getting sick. 

I recommend Crohn's and UC sufferers warriors learn by process of elimination what foods work best for you. And then, in a year or two, try again. I have discovered that I can eat some foods now that I couldn't eat previously. I believe our bodies and our symptoms are ever-changing, and it is to our benefit to change with them. 

A great source for elimination diet tips and how-to's can be found at  http://www.precisionnutrition.com/elimination-diet.

What are some of your go-to foods? What about your big no-no foods? Comment below!

Happy, Healthy Holidays!

To my readers, I wish you a very happy, healthy holiday! Regardless what it is that you celebrate this time of year, I hope you find comfort, happiness, and some delicious treats that won't leave you camped out in the potty!

I will be posting another entry about foods very soon, as I've had many requests for more information on this topic. If there is something you'd like to read about on my blog, please send a message to me or comment with your suggestions!

Merry wintertime holidays! Peace, health, and happiness to all!

When it Rains, it Pours

Just want to post a quick update for my readers. But before I do, I want to scream THANK YOU at the top of my lungs to everyone for sharing my blog and getting it read around the world! My viewership has extended all across the globe, and it's all thanks to the great, supportive audience I have!

Please, feel free to share my blog ANYWHERE - Facebook, Twitter, Tumblr, anywhere you hang out online. I want to help as many people as I can! The blog can be translated in to any language, so let's send it around the world again!

Now on to my update...

When things keep going wrong, they say "when it rains, it pours." Things have seemingly gotten worse for me over the past several days, but it's not all related to Crohn's Disease. The outbreak of shingles seems to be slowly getting better, but I have some days where the pain extends all across my neck, shoulders, and scalp.

My doctor has prescribed oxycodone for the shingles pain, and while this stuff definitely helps mask the pain, it makes me as loopy as a rollercoaster! It feels like being drunk, but not in a good way (if there even IS a good way). So, I've resorted to only taking it at nighttime to help me sleep. That doesn't work so well either, it seems, as it has disrupted my already-faulty sleep pattern. I wake up nearly every hour of the night, feeling pain-free, yet cuckoo as a clock. Needless to say, my mornings are miserable.

In addition to my Crohn's flaring up and the shingles outbreak, I now seem to have acquired a sinus infection. I get these quite often throughout the year, mostly when the weather changes. Pretty sure I single-handedly keep the facial tissue and nasal spray industries in business.

All of that nose blowing has me looking like Rudolph the Red Nosed Reindeer, which, I must say, is perfect timing for the season! I'll be guiding no fat men in sleighs, though. The nasal spray helps with breathing, but makes my throat raw and scratchy, and suddenly I can do mean Gilbert Gottfried impression!

I can't seem to catch much of a break lately with all these various illnesses popping in and out of my life. But, I'm staying positive thanks to my wonderfully supportive friends and family, and even strangers on Internet support groups. Thank you again, readers! And, I promise to post another Crohn's related update very soon! Stay tuned!

The Camera Goes WHERE?

Colonoscopy, Sigmoidoscopy, Endoscopy... they're all different versions of sticking a long tube with a camera into places cameras shouldn't go. But, for Crohn's and Colitis patients, they're medically necessary.

As I discussed in this post, the preparation for these procedures is the worst part of the entire process. From the moment you arrive to your appointment, you can finally relax a bit and just let it all happen. Chances are, you didn't sleep much the night before, and the thought of being forced to nap with anesthesia is probably a welcome one.

When I arrive to my appointment, I am given a super-stylish hospital gown and robe, as well as a pair of non-slip socks to wear. Once I have changed into these designer duds, I'm led to an area of the clinic or hospital with comfy seats and curtains.

Here, the attending nurse or medical assistant starts an I.V. with a saline drip. That poke of the needle is the only pain you'll experience the whole day. From here on out, it's a breeze.

After the I.V. is placed and I've been pumped full of a bit of saline, the nurse leads me to a room with an exam table. They have me lie on my left side, and usually give me warm blankets to cozy up with.

At this point, the nurse puts anesthetic medicine into the I.V. line, and within seconds, I'm completely out. Even though the anesthesia used for these scopes is a light "twilight" kind, it still knocks me out to a point where I don't feel or remember anything about the procedure.

The next thing I know, I'm being woken up by a different nurse, and I'm surrounded by the sounds of people farting. Yes, that's right, farting. Intentionally.

When you have a colonoscopy, you are typically pumped full of air in order to get a better look at your intestines. Before you can leave the clinic or hospital, you must pass this gas. Needless to say, this happens in the recovery room, which is usually an open area with curtains separating the patients. You get to hear it all!

Farting is always funny. And anesthesia makes everything seem about 10X funnier. If you don't have a sense of humor, get one. You're going to need it.

After I'm able to pass gas (giggling not required, but highly recommended), the nurse usually allows me to have something to drink of my choice. I opt for soda most of the time, and it's always served in a short little can with a plastic cup. I don't know why, but this is funny to me. Like I said, everything is funny when you're still coming out of anesthesia.

Once I have proven to the nurse that I can keep liquids down, he or she takes my I.V. out of my arm, and I am free to go. They ask you to change back in to your own clothing, because I'm sure everyone is pining to steal their fabulous gowns. I am then released to the care of which ever adult came with me to my appointment. This adult is usually my mom, because moms are the best!

When we've left the hospital or clinic, I whine and beg my mom to take me out to eat. Granted, I'm in no physical shape or appearance to be going out in public, but damnit, I'm hungry! And everything sounds delicious! She usually obliges, and we do just that.

The rest of my day I usually spend in bed or on the couch, dozing in and out of sleep. The effects of the anesthesia can last up to 24 hours, so I typically just stay at my mom's house during this time. I have never experienced any pain in my guts following a scope, but I have experienced some blood in the toilet from where they took biopsy samples. Luckily, this is fairly normal, and since there are very few nerve-endings in the bowels, this doesn't hurt.

By the next morning, I'm feeling fine as frog hair (what does that even mean?!), and I'm able to return to normal activities. Sometimes the doctor calls with my scope results the next day, but it's usually a few days later.

Prepping for Humility

It's a little strange to think that I was supposed to spend today on a clear-liquid diet, followed by colon cleansing preparation for surgery. Now that surgery has been postponed, this gave me an idea of something helpful I can post about - preparing for colonoscopy / sigmoidoscopy / intestinal surgery.

If you've ever had a colonoscopy, you will probably nod in agreement that the worst part of the whole process is the preparation. The procedure itself happens while you are under anesthesia, so you wont feel or remember anything. But the day before the procedure, I'm not going to lie...

IT. IS. HELL.

I'll give you my personal experiences (I've had 3 colonoscopies, 1 sigmoidoscopy, and a few upper endoscopies just for fun), and the preparations for each all produce the same results, just with different preparation mixtures.

Step 1: I spend the week before the procedure eating and drinking only simple foods that are easy to digest and won't upset my guts. This supposedly ensures the prep will be easier. I say "supposedly," because I don't really think any type of "diet" will make the prep more bearable.

Step 2: The day before the procedure (or starting 24 hours before), I am restricted to a clear-liquids only diet. That means if you can't see through it, you can't drink it. And absolutely NO FOOD. Some of the recommended drinkables are:
Water (duh)
Clear soda
Broth - chicken, beef, or vegetable
Apple juice
Fruit-flavored beverages (Kool-Aid, Crystal Light, etc.)
Jell-O
Popsicles
Hard candy
Coffee (YAY!) or tea, WITHOUT cream (sugar is OK)

This diet has been known to cause mental insanity in those who love food**. I recommend keeping to yourself for the entire day, because things are only going to get worse. That's not intended to scare you, I'm just being honest!

(**I made that up.)

Step 3: At a particular time of the afternoon or evening that the doctor has already determined, chemical prep begins. I have used three different types of colon prep, all of which provided the same results.
 

Golytely: This is a 1-gallon bottle you get by prescription only. This is probably the oldest, most-common colon prep solution available. I even recall my grandmother using this when I was but a wee girl. When you get the bottle, it's mostly empty with some powdered junk inside. You fill the gallon jug with lukewarm water (yes, lukewarm - not cold, not even room temp. LUKEWARM). Once the mixture is completely dissolved, you drink it. Sounds easy enough, right? Let me see if I can explain what it's like, using my education and wordsmithing ability:

It's really yucky.

You have to drink this entire gallon of piss-warm, synthetic-salt-water tasting liquid. And yes, one size fits all, apparently. Whether you're a 400lb person or a 90lb person, you have to drink ALL of it. And, to make things worse, you have to drink all of it WITHIN 2 HOURS.

After the first glass or two, I started hearing the sounds of beached whales in heat coming from deep within my guts. After the third glass, I felt my bowels literally moving.

A little piece of advice while doing colon prep: don't trust that fart. In fact, don't trust that cough, sneeze, or giggle either. Just get to a toilet ASAP.

As you can imagine, the remainder of the 2-hour chug-fest was spent mostly on the toilet, with occasional breaks to drink more Golytely. I tried sucking on hard candies before taking a swig to mask the horrific taste, but chemicals are stronger than sugar, and there is no hiding that flavor.

I had almost finished the jug within the 2-hour window, and my body had completely turned against me. I was now gagging at every sip, I was extremely bloated and feeling feverish - all while continuing to visit the royal bathroom throne endlessly. I couldn't bring myself to finish the last 8 ounces or so, and I convinced myself this was okay. I believed there was no possible way for my body to handle any additional internal cleansing.

Turns out, it was okay. In fact, my doctor told me the next day that they don't actually expect everyone to drink the whole jug. They prescribe it that way, though, so you will drink as much as you can force. Those bastards!

Fleet Phosph-Soda: Don't be confused by the word "soda" or by the "ginger-lemon flavor" description. There is nothing resembling gingerale in this package. NOTHING. This stuff is just a concentrated version of the Golytely jug, and ultimately, you're going to drink the same amount of liquid.

This 3 ounce bottle packs a punch. And they give you TWO of them. 6 ounces seemed like such a relief from that giant gallon jug, until I read the instructions. I had to mix these bottles with approximately ONE GALLON of water.

The only bright side here is that the water could be as cold as you desire. Since this stuff is already in liquid form, it mixes nicely at any temperature.

It tasted the same as the Golytely, except it had a slight pharmaceutical sweetness to it. That made it taste even worse, in my opinion. It was a little easier to chug ice-cold liquid, however, and that did make the prep about 0.0001% easier than the Golytely prep.

The process was about the same - over a 2 hour period, you had to finish both bottles with the respective amounts of mixed-in water. Only, this time I actually prepared myself to spend the entire evening in the bathroom, by having reading material, a blanket, and even a pillow to place behind my back. I highly recommend these items, as well as your phone, tablet, or a laptop, so that you can communicate to the world the exact torture you're experiencing.

Suprep Kit: Finally, someone in the pharmaceutical industry must have had a colonoscopy and realized how appalling and disgusting the prep is. Because this product, Suprep, was a saving grace!

This kit comes with everything you see above, including the cup. The bottles of liquid are just 6-ounces each. This type of prep is a two-step process: you do half of the prep the night before, and the other half the morning of your colonoscopy.

My experience with this product was mostly better than the previous preps. In this kit, you drink one of the bottles of liquid STRAIGHT. It's not necessary to mix it with anything. It doesn't taste great, but it doesn't taste as horrible as the Golytely or Fleet preps. After you drink the bottle, you drink several cups full of plain water. Using the provided cup, you don't have to guess at how much you're drinking, because the instructions tell you how many of their cups of water to drink.

The whole thing took about an hour, although I don't recall there being a specific time limit to this one. It took a little longer for it to work its "magic," but soon enough, I was a fixture in the loo, as expected. I still experienced the stomach bloating and feverishness, but I knew to expect that.

The next morning, I had to take the second dose. For some reason, my body decided "nope, we're done here," and I puked up the bottle of liquid almost immediately. I was still able to drink the necessary cups of water, and I was pretty darn sure there was nothing left in my bowels to be cleaned out after the night before. I was right, the colonoscopy happened without any problems.


Step 4: I suppose I already touched on step 4, which is the whole bathroom experience. But for the sake of laughter, let's recap:
 - Never trust a fart, giggle, cough, sneeze, or any sudden movements, unless you are already on the toilet.
 - Have your cell phone, tablet, laptop, or Kindle fully charged up and with you in the bathroom. You can only read that shampoo bottle so many times before you start repeating it in your sleep.
 - Your ass WILL hurt, when all is said and done. Pure liquid will be escaping you at a rate you never thought possible for the next 4-8 hours following colon prep. Have some baby wipes or disposable wipes available to help stay clean and comfortable.
 - Wear comfortable clothes. And don't wear expensive ones... it goes without saying you might "mess" in your britches.
 - Try to convince yourself that this will be worth the humiliation, pain, and disgust. And go ahead and plan out a midday meal following your procedure! You'll be loopy and fuzz-brained, but it will be the best meal you've ever had!

I have not covered all of the available colon preparation types in this post, I have only talked about the ones I've personally used before. In fact, the preparation for my surgery is not any one of the three I discussed - it's a simple mixture of over-the-counter laxatives and Miralax solution with some Gatorade. Hopefully this will be more pleasant than the last time!

What was your prep experience like? Did you have a different type of prep solution? Have you ever been turned away from your 'scope appointment because you weren't cleaned out enough? Let me know in the comments or privately by using the contact box to the right.

Get Well Never

Any Crohn's patient can tell you, there are good days and there are bad days. We all strive to have more good days, but those bad days always sneak their way in.

Today, I'm having a good day! The shingles outbreak seems to be less painful and guts are *gasp* behaving. That, or I'm just getting accustomed to pain.

My pain tolerance has grown over the years, thanks to Crohn's Disease. While most people would find this to be a positive trait, I'm scared of it. I find myself putting up with pains that would place most people into the fetal position on the nearest bathroom floor. Ignoring these pains and aches could be detrimental to my health.

That's most likely how I ended up with two fistulas in my intestines. These things are extremely painful, and the beginning ulcers would have been extremely painful. But I wrote off the pain as if it were just Crohn's being Crohn's, contracting my guts and making me uncomfortable. Early intervention may have prevented those ulcers from becoming fistulas.

Feeling too much pain, vomiting too much, or having an overabundance of ANY symptoms should never be taken lightly. But when you go for weeks, months, or even years with persistent pain, it becomes second nature. I'm sure there have been many times when I should have gone to the hospital to address my symptoms, but I chalked it up to "just another flare."

So, please, fellow Crohnies and UC Buddies, consider every symptom you experience, and really think it through before ignoring it or writing it off as "nothing." Symptoms are the warning signs of problems, and we need to take care of them before they take over our bodies!

Be seen by a health professional as soon as humanly possible if you experience:

• Unusual or new pain
• Fever - even low-grade fever can indicate infection
• Sudden weight loss (more than 10 lbs in one week)
• Bloody vomit or stools

These symptoms are not uncommon for Crohnies, but they can indicate something serious brewing in your body.

Obligatory disclaimer: The contents of this blog are of my own education, experience, and opinions. In no way should any information in my blog be used in lieu of proper medical or nutritional care. Use common sense.

LIFE, POSTPONED and An RN's Point of View on Abdominal Surgery

Thanks to this sudden outbreak of shingles, the surgeon has postponed my surgery until I am cleared by my regular physician. It's too risky to perform surgery on someone with a viral outbreak, or any kind of infection for that matter.

In the meantime, I will continue to update my blog! I am keeping all of the details of my medical "adventures" as transparent as possible, because that's what will benefit others the most.

I would like to share a message I received from a very good friend of mine, who is a nurse. She has spelled out, step-by-step, what to expect from abdominal surgery, or any major surgery. This message has given me the most clarification, understanding, and reassurance, and I hope it will do the same for you.

• "I'm sure you heard a lot of 'it really depends on what we find when we get in there', and that seems to be true. My textbooks are aimed at the pre and post op ends rather than the surgical end as nurses don't need to know all of that, but it offers a bit more of what you are looking for. I figure I will give you best and worst case scenarios, and how to deal with worst case (I am going to leave out the obvious worst cases of death and whatnot and just mention the ones that do not get covered with every surgery)
  Starting with general abdominal surgery, best case (and most common), you will wake up with fuzzy memory and no pain, the pain will slowly return as meds wear off. You want to let your nurse know the pain is returning BEFORE it gets out of control as it is much easier to control pain at a steady rate than to try and play catch-up after it has reached a certain limit. Worst case, you wake up in post op recovery and have a significant amount of pain (this generally only happens if you wake up before they expected and is fairly rare), in this case I will not need to tell you what to do, you will do it, but just in case you are the very rare quiet type with this level of pain, don't be. The more vocal you are about being awake and in pain the faster someone will realize the issue and fix it. In the best case you should have something called an 'incentive spirometer' next to your bed, you breathe IN through this (everyone wants to blow on it) to encourage yourself to take deep breaths you can mark off how well you did on it as a level to beat next time. This has been shown to be surprisingly effective in preventing post op pneumonia and pulmonary embolism, which are higher risk in abdominal surgeries due to the 'discomfort' involved in taking deep breaths and coughing. You will likely be encouraged to cough, this clears out all the junk that settles in your lungs due to anesthesia, this WILL hurt. The best advice I have is to ask for an extra pillow or bring a small square pillow from home to kind of hug while you cough, it helps brace the abdominal muscles so it feels less terrible, again, stay on top of pain so this wont be so bad. You will obviously have weight restrictions but they will likely want you up and walking far sooner than you are interested in doing so, this helps your guts wake up, but it also helps prevent every blood clot related complication you can think of. Try to do it if you can, if not, let them put the SCD (leg squeezing air things) on you, you will hardly notice them after an hour or so.
  Specific to your surgery. You may be kept on TPN (IV fluid that has all the nutrition you could need) for a couple days to rest your bowels, you may have an NG (naso-gastral) tube to suck out any gas or mucous so the bowels can rest, you may have an NG that is feeding you and fuck resting your bowels, and you may be on a liquid diet. This all depends on how mobile your guts are, how much poking at them needed to be done, and how inflamed they were. The worst case here is actually slightly more common with bowel to bladder fistula because there is more inflammation involved, this is a temporary stoma (two actually) both sides of your guts may be ending on the outside just until they calm the hell down, then they go back in and put them back together (a quick and dirty procedure) These can be sore, but more often they are disturbing to people for a body image reason. You may or may not have drains coming out of your belly, these types of drains are generally more annoying to people than painful (so says my patients) and are usually removed within a couple days which is quick and described as a weird feeling, sometimes a burning feeling, but rarely painful, it happens so fast it would be similar to having an ear pierced where you notice the quick tinge of pain but it is already done (I've removed them, patients often don't even know I did it). Due to the bladder involvement, and the possible nutritional options, you may have a catheter for a couple days, good news, you don't have to get up to pee in the middle of the night . Worst case it may be on irrigation, this is a fairly rare situation with this surgery, but if you develop bleeding from the wall of your bladder they often put irrigation on to allow you to pass clots, it's cold, and it can make your bladder spasm so you think you have to pee all the time. If you have an NG tube either for decompression or feeding you want to keep the area of your nose where the tube touches clean and dry, seriously, not even a little bit kidding. This tissue can breakdown in hours, and you don't want a lopsided nose, let them monkey with it even if it feels clean to you. You will likely be asleep when it is placed, but if not, make an attempt not to punch the nurse, the eye-watering part is quick if you can force yourself through it. Removing the tube is less bothersome, but keep in mind a tube gets dragged across your gag reflex and puking and heaving are not uncommon. As gross as that sounds every single person I have had with a tube has said 'the puking and gagging on removal was well worth it to have the thing out and get to have a drink of anything, everything, just give me a thing to drink'. As far as the pain goes, it can be significant BUT the doctors know this and they want you to be active and getting better, they will do what they need to to provide pain control (get use to being asked to rate your pain on a 1-10 scale every time you open your eyes), be honest about your level of pain, and ask for relief before it gets to be too much. Abdominal surgeries effecting the bowel are tough because the bowels are slowed by the medications for pain, but remember that the complications from not participating in activity are WAY worse. 90% of your nurses will understand that this is a particularly tough incision to deal with since every movement involves these muscles and they will offer you plenty of pain meds, there is always one nurse who thinks everyone is 1: an addict, 2: going to become an addict, or 3: going to overdose on the same dose they have has for days... ignore her bitchy attitude (everyone else on the floor does) advocate for yourself. Last but not least, be prepared (and let [family] know to be prepared) for an emotional reaction no one warned you about (umm, well almost no one). You are well aware you will have a scar, but open abdominal surgeries leave an incision in a spot nearly impossible to NOT see during bandage changes and they can look really bad at first. Knowing this, knowing it will get better, knowing you are loved, none of that may matter. It is a kick in the teeth to see on your own body and can really have an impact at first, add to that you will likely be barred from eating that emotional wave away and there are people all around all the damn time, your sleep is interrupted, you're uncomfortable... just be ready for some teenager in PMS level emotions."

I have slightly edited a few items of the above message for clarity, but as you can see, she was extremely clear on what to expect. I am so grateful for this outline from the point of view of someone who directly cares for surgery patients. Let me know if you find this helpful!

Shingle Bells!

In yesterday's blog post, I talked about some of the seemingly unrelated symptoms of Crohn's Disease. Today, I am a walking demonstration of a strange manifestation due, in part, to Crohn's: SHINGLES!

I noticed this painful spot behind my ear (pictured) this morning, and had pain radiating across my scalp and down my arm. I went to the urgent care clinic as soon as I could, because I knew any kind of infection might prevent next week's surgery.

Shingles is not caused directly by Crohn's Disease. Crohn's has weakened my immune system, allowing the virus which causes shingles to present itself in a most painful, ugly way.

I have yet to find out if my surgeon will cancel the plans for surgery next week. In the meantime, I'm hiding from babies, pregnant women, and anyone who's never had chicken pox, so they don't get shingles from me.

Symptoms of Being Awesome

When people think of Crohn's Disease or ulcerative colitis, the first thing that comes to mind is constantly running to the bathroom, and being doubled over in pain. These seem to be the "standard" symptoms for sufferers of these diseases, and sadly, that's as much as some people know about the disease.

But there are so many more symptoms of CD & UC, some of which are so bizarre, it seems to be a different disease altogether. I'll organize this list similarly to how I organized the foods list; here are the most common symptoms of Crohn's:

• Abdominal pain - it can affect just one area of the abdomen, or the entire abdomen. 
• Diarrhea
• Fever and night sweats
• Nausea
• Vomiting
• Extreme bloating - makes you look pregnant
• Bleeding (internally, or in the intestines, visible only when you use the bathroom)
• Severe heartburn or acid reflux
• Extreme lethargy
• Open sores near the mouth or anus
• Sudden weight loss
• Joint pain and swelling
• Muscle deterioration

There are also some "side" symptoms that come with the disease:

• Anemia - iron, B12, and other nutrients that the body can not absorb naturally
• Depression
• Anxiety and fear
• Energy loss
• Low libido
• Trouble swallowing
• Stunted growth in children with the disease

When Crohn's really wants to be an asshole, these symptoms can take place:

• Fissures - sores or cracks in the intestine, usually near the anus
• Fistulas - one or more organs ulcerate and attach to another organ; most common fistulas are colon-to-skin (literally a gaping wound on the abdomen), colon-to-intestine, colon-to-bladder, and colon-to-uterus in women
• Intestinal blockage - the intestine becomes so swollen, it causes a complete blockage. Nothing can move through, and this usually requires surgery
• Perforated bowels - can spread infection throughout the entire body

All of the symptoms listed above tend to come and go with Crohn's sufferers. During a "flare," the Crohnie may have one or more, or even ALL of the symptoms listed. Typically, flares can be treated with medication, and eventually put in to remission so that the person can return to a somewhat normal life. Flares can last anywhere from a few days to several years. I, for instance, have had one of my fistulas for over 2 years. Medication isn't helping, so it's time for surgery.

Now, I want to talk about the not so common symptoms of Crohn's Disease. Some of these are so strange and seem like they can't possibly be related to Crohn's. But remember, Crohn's Disease is an autoimmune disorder. That means our immune systems are obnoxious little bastards who think it's fun to throw curve balls, just to confuse us (source: I made that part up). 

Here are some of the weird, bizarre, contradictory symptoms of Crohn's Disease: 

• Itchy hands and feet - it's the kind of itch that seems to be so deep inside, scratching is futile
• Erythema nodosum - painful, itchy red bumps on the calves and shins, usually along with swollen ankles
• Eye sores
• Psoriasis and/or eczema
• Nail clubbing - fingernails become too large and too curved; typically have pits and waves in them as well
• Sudden blisters on the hands and feet
• Excessive salivating
• Vertigo
• Neuropathy (numbing & pain) of the hands and feet
• Random, uncontrollable cursing and swearing

Ok, so that last one was just for fun, but it happens! The last list includes things I have personally experienced, and discovered to be secondary symptoms to my Crohn's Disease. As you can see, Crohn's can manifest itself in a myriad of ways. In no way are my lists complete, and I would love to hear from others what their symptoms are. Please feel free to comment below or use the contact box to let me know!

Must Be Something I Ate

In this post, I want to talk about foods that Crohn's and ulcerative colitis patient can and can't eat. As you will learn, that is a very general statement. But first, I want to make a few things clear...

One of the most common misconceptions about Crohn's Disease and ulcerative colitis is that it's caused by foods we eat. As if eating some sinister combination of foods will cause anyone who eats it to become gravely ill. I would like to clear that myth up right now, in a way that should be easy for anyone to comprehend.

Crohn's Disease is a disorder of the immune system. In people with the disease, the immune system thinks the digestive system (anywhere from mouth to butt) is a foreign object, and tries to attack it. This leads to severe swelling, bleeding, and pain as our bodies try to "fight off" something it shouldn't be. Basically, it's a civil war between body functions. What a person eats will not determine whether or not they get the disease. 

That begs repeating:

WHAT A PERSON EATS WILL NOT DETERMINE WHETHER OR NOT THEY GET THE DISEASE.

It's extremely difficult to determine what causes the disease to become active in someone who carries the disorder. In fact, years of medical studies have still not pinpointed exactly what factors cause the disease to "activate." Some theorize it could be certain types of pollution, various medications, or pure luck. A popular theory is that genetics determine the exact moment the disease will become active, and studies are ongoing.

With all of that said, let's talk about FOOD!

If you came here hoping to find a list of foods you can offer to your Crohnie friends, I'm terribly sorry that I can't provide that to you. No one can. There is no one-size-fits-all diet for Crohn's sufferers. But, I can give some perspective from at least one point of view - mine.

I'll start with the most common trigger foods, which seem to cause symptoms for many people with the disease. These are NO-NO foods for me:

• Nuts - any kind
• Seeds - any kind
• High-fiber foods, such as whole grains
• Most fresh fruits, especially apples (including applesauce), strawberries, grapes, and raspberries
• Fresh greens, like lettuce, spinach, or cabbage
• Vegetables with seeds or "skin," like corn, peas, and small tomatoes
• Vegetables with stringy insides, like celery or bean sprouts
• Beans - any kind (although, I can get away with eating green beans sometimes)
• Spicy foods

As you can already see, eating "healthy" is really difficult for me because all of the healthy foods make me sick. Here are a few other seemingly random items I have discovered I shouldn't eat, that aren't as common as the above items:

• Bacon (yes, it's OK to cry)
• Red meat
• Some fried foods - still trying to determine if it's a certain type of oil
• Popcorn
• Peppers - all kinds, even the sweet variety
• Onions
• Highly-carbonated beverages

I won't lie and say that I NEVER eat the foods in the lists above. Sometimes, I bargain with myself: If I eat this, will it be worth the pain/fever/trips to the bathroom or possibly even a trip to the hospital? It's a gamble. Sometimes I win, sometimes I lose. But I also do this to keep trying foods that once triggered my Crohn's, to see if my Crohn's will now allow me to have them. 

At one point, I could not digest any cholesterol. ZERO. All meat, eggs, and dairy made me violently ill with vomiting. (It was a trip trying to narrow down the diet to figure it out, too, trust me.) After about two years of a strictly-vegetarian diet, I started to reintroduce animal products, one by one. I can now consume dairy products, eggs, and even some poultry and fish/seafood! Sorry, animals, but this girl is hungry, and you're edible. 

The cows and pigs remain lucky at this point. 

The things I CAN eat will be in another post, for another time. It's a sad list, because it's short, and it's full of all of the things that make other countries hate America. Until then, please feel free to comment with your trigger foods, or questions about certain foods. 

What's It Like?

One area of research I have had a hard time finding information on is the surgical experience. 75% of people diagnosed with Crohn's Disease will require surgery at some point (source: CCFA). However, when I would search for articles, blogs, or any kind of "user reviews" on Crohn's surgeries, I mostly just found medical journals - no actual user experiences. That's another reason I'm creating this blog.

My healthcare team and I recently decided that surgery is the best option for me right now. I have two fistulas: one enterocolic fistula (connecting my small intestine to my bowel), and the other an enterovesical fistula (connecting my bowel to my bladder). The surgery, called fistulectomy, will be done under general anesthesia, and will be open-abdominal, rather than laporoscopic. This means the healing time will be quite long, and I will spend a minimum of 7 days in the hospital.

That's all I really know at this point, as far as what to expect. But I want to know more - specifically, what will I feel the moment I wake up from surgery? How much pain should I expect and for how long? What kind of tips/tricks will help me heal quickly and safely? What will life at home be like for the first few weeks? These, and many other questions that I have cannot be answered with anything other than "general" answers by my healthcare team. So, I turned to the trusty Internet, where I have always found answers.

I came up empty-handed.

I finally posted my questions to Crohn's support groups on Facebook, and received a few very general answers. "Surgery was the best thing I ever did!" "It was painful, but it was worth it." These weren't the answers I was seeking. I wanted to know about the whole experience. What's it like to go in to surgery? What's it like to wake up after the surgery? What's it like at home?

That's the ultimate reason for this blog - to give future Crohn's patients a place to find out what it's like. From surgery, to medications, to flare stories, to foods we can/can't eat, I want to share it all. And I'd eventually like to have more than just my personal experience; I'd like to have other Crohnies contribute their experiences.

Every Crohn's Disease patient has a story, and every story is a little different. This is my story.

It Takes Guts

Since my official diagnosis of Crohn's Disease in 2002, I have found the Internet to be my most useful tool in learning about the disease itself and, most importantly, other people's experiences with the disease. The Internet helped bring me from feeling awkward and alone to feeling like I was part of a community - a part of something bigger. I no longer had to suffer alone, and I quickly discovered that many of my own experiences were completely normal among a large population of fellow Crohnies. I have come to depend on the net-izens of the Crohn's community to gauge my own expectations, and for support when I need it most.

I want to give back.

Sounds simple enough... anyone can donate to Crohn's organizations, like the CCFA, or participate in fundraising activities like the GYGIG Ride. But these weren't the things, people, or activities that helped me the most. I wanted to be able to help people directly, one-on-one. I wanted to give the same reassurance and support I had received over the years from fellow Crohnies.

That's where this blog comes in.

I decided to create this blog to chronicle my Crohn's Disease experiences, in hopes that someone will benefit from the information, or just not feel so alone. I invite you to read my experiences, share info, ask questions, and be curious!

It takes guts to put up with this disease, its symptoms, the endless sea of medication, and life as a Crohnie in general. We are a force to be reckoned with!