Comic Relief

I think it's pretty safe to say that anyone who battles with a chronic illness will agree that laughter is great medicine. That being said, there's not much about Crohn's or UC that is "funny" or "fun," but it certainly can provide us with some awkwardly hilarious situations.

It takes a brave person to not only share their story, but also to find the humor in it. Situations like this usually aren't funny at the time they happen - more embarrassing and humiliating. But if you can look back on an incident and laugh about it, you're doing something right!

It is here that I will share one of my own awkward, funny stories.

About a decade ago, I was shopping with my significant other at a local big-box store. I had felt fine the whole day, and we had just left a pizza parlor where we had dinner. This store had a counter with cash registers in the middle of the health and beauty section, which was where I was browsing. Suddenly, out of nowhere, I experienced a sharp pain in my stomach, right behind my belly-button. It came on so fast, I momentarily thought I was being stabbed! I crouched down in the aisle, cradling my stomach with my arms, hoping and waiting for this pain to pass.

Just as the sharp pain began to subside, I felt a strange tingling in my jaw, and my mouth began to water excessively. Something in my brain told me what was about to happen - I was going to vomit RIGHT NOW.

The restrooms were clear on the other side of the big-box store, and I knew there was no way I could make it to them without losing it along the way. I frantically searched around the aisles for a rogue trash can, to no avail. By this point, sweat was dripping down my face, and my significant other was keeping his distance - probably fearing I was turning in to a werewolf.  I rounded a corner and spied the counter with the cash register, with a very young man standing behind it. In the only voice I could muster up, I said, "I need a trash can!" The employee just stared at me for a moment, and said, "For what?" with a distrusting look on his face.

At this point, I could not wait any longer. I saw the trashcan behind the distrusting employee, and made a mad-dash OVER the counter. I hovered over that trashcan for a good 3 minutes while every last bit of my insides emptied themselves on top of purchase receipts and product packaging. When it was finally over, I slowly got to my feet and looked at the young employee. An utterly horrified look replaced his distrusting gaze, and he ran from behind the counter as fast as his skinny little legs would let him.

My significant other was standing across the counter with a concerned, but amused look on his face. He kindly said, "I'll go get someone to take care of that trash can."

When all was said and done, and I had apologized up and down to a very kind and understanding store manager, I really did feel physically better! I made sure to purchase a spare toothbrush and toothpaste before I left, and cleaned myself up in the store restroom. As embarrassed as I was during the entire debacle, I really felt sorry for that poor, young boy standing behind the cosmetics counter. I never saw him again, and I often wonder if he opted for a new career path.

It is also with a big chuckle that I can look back at this incident and see the chaotic humor. In that instance, as well as others, I learned that while much of the general public may not understand our disease, they WILL deal with it, whether they want to or not!

I hope sharing my story will help you take a look at your own embarrassing struggles with this disease, and find the humor. I hope it will help you to remember that despite these pitfalls, life does go on, and we survive the most awkward of moments.

I invite you to share your funny story! Remember, you can post anonymously in the comments if you don't wish to be known. How do you feel now that you look back on it?

'Roid Rage

Nearly every Crohn's or Ulcerative Colitis patient has, at some point, been prescribed steroid medication. And nearly every Crohn's or UC patient will tell you, it's the necessary evil.

This class of medications, known as anti-inflammatories, cortico-steroids, or just steroids, is commonly prescribed to help calm down inflamed intestines. Crohn's and UC's most common symptom is inflammation of the lining of the intestines, and it can cause severe pain, cramping, bleeding, and can also indicate infection. The steroid medications work very quickly to reduce this inflammation, thus reducing the pain, bleeding, and discomfort. The most common steroid medications used for Crohn's and Colitis are Prednisone, Methylprednisolone, and Prednisolone. They all come in various brand names and strengths, but typically produce the same results.

When I was first diagnosed with Crohn's in 2002, I was prescribed 80mg per day of Prednisone. 80mg is a LOT of steroid power. Within one day, I was feeling better, was able to eat regular foods, and had regained some of the long-lost confidence I had in myself.

After about a week of being on 80mg of Prednisone, I started to notice I was putting on weight, which, at the time was a good thing. I had lost over 20 pounds too suddenly before the diagnosis, and needed to gain some of it back. I also noticed my face getting fuller, which at first, I thought was because of the weight gain.

I was wrong.

Prednisone and other steroids come with a myriad of side-effects. "Chipmunk cheeks" is a very common side-effect, and over time, seriously makes you appear to have a mouth full of food. How or why this happens, I do not know (and I'm too lazy to Google it at the moment). But it happens to so many users of Prednisone, that it's almost become an inside joke - thus the silly picture above.

In addition to puffy cheeks, steroids come with a seemingly endless list of other side effects. The longer you take the steroids, the more side effects you'll likely experience. In fact, long-term use of steroid medication is highly discouraged by most doctors, because after awhile, the risks of the drug outweigh the benefits.

Since I seem to love making lists (see my previous posts), here is a list of the most common side effects of steroid medications:

• Aggression / irritability / anxiety
• Water retention
• Fast, slow, or irregular heartbeat/pulse
• Headaches
• Pounding in the ears
• Swollen fingers, hands, legs, and feet
• Breathing difficulty
• Blurry vision
• Dry mouth
• Heartburn / indigestion
• Increased hunger/appetite and thirst
• Insomnia
• Increased blood pressure
• Nervousness
• Inability to concentrate
• Loss of sexual ability
• Delayed healing of wounds
• Swollen cheeks or neck
• Worsening acne
• Thinning hair
• Dry scalp
• Irregular menstrual cycle (in females)
• Food intolerance (dairy, gluten, etc.)
• Yeast infections and/or thrush
• Uncontrollable shaking or tremors

Long-term steroid use can cause:

• Osteoporosis or loss in bone density
• Depression
• Chronic bronchial problems, shortness of breath
• Spinal pain and vertebral compression fractures
• Thinning of skin
• Hyperhydrosis (sweating too much)
• Muscle wasting (decreased muscle mass)
• Hyperglycemia and glucose intolerance (with symptoms similar to diabetes)
• Hallucinations
• Violent behavior
• Hypothyroidism
• Congestive heart failure
• Stomach ulcers 
• Pancreatitis

(Please note: THESE LISTS ARE NOT ALL-INCLUSIVE. Report your possible side-effects to your doctor, or directly to the FDA in the United States, or to your local drug regulation body.) 

Because the side-effects can be serious and life-threatening (and annoying), most doctors will eventually prescribe a different type of long-term medication to help control Crohn's Disease or Colitis. There are several different classes of medications for Crohns and Colitis, some of which I will cover in future posts.

As if this nightmare of steroid side-effects isn't horrifying enough, suddenly stopping your intake of steroid medications can also have serious effects. It's almost always prescribed that patients slowly "wean" off of steroids, to avoid having the same, or worse side effects listed above. This weaning process can last for weeks or months, depending on your dose and condition.

As I said before, steroids do work very well for most Crohnies and UC sufferers. They work quickly and effectively, and it's often a huge relief just to feel better. But I highly recommend getting off of them before you develop a seething love/hate relationship with them, like I have!

What was your steroid use like? Feel free to share in the comments! By the way, comments can now be left anonymously! Just choose "Anonymous" from the drop-down box next to 'Comment As.' As always, remember to share this blog with anyone you think might be interested!

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!

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.

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.