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?

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.

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.