Wednesday, January 16, 2013

Gluten free colonoscopy *updated

*Update added to the end
Good food is really important to me. I love getting to talk about it, share recipes, products, and ideas. I am going to pause briefly to highlight the importance of keeping our bodies healthy for more food conversations to come.

If you have passed the 40 marker in life, you have had a colonoscopy. (No you say, well you need to, soon.) They do not hurt and they are the best, and often only way, of detecting colon cancer. If you are no stranger to GI problems, you might have had one, or perhaps you have found this page because you are about to undergo a procedure. WELCOME!

I decided to write this post after googling "colonoscopy prep" and reading that the first page in the search results recommended "keep a good book in your bathroom, you are going to be in there a while." This type of advice infuriates me. It is not fair to lie to people who are frightened of an unknown test that because we culturally have a taboo about talking about poo, people are giving misinformation.

In 2007 I had my first colonoscopy. Later this week I will have my 2nd.

I can only speak to my experiences, but I am going to do so like you are an adult and can handle the truth. If you can't, click away now.

Still here... ok good.

Being told you need a colonoscopy
1. You live in the U.S. and you are 40 and you are told "it is time"
2. You are experiencing some health issue that has prompted at least 2 doctors to say "let's get a colonoscopy to rule out _____"
3. You have family history of colon polups and/or cancer and you get told "it is your time"

This part is scary. No matter what category you are in, it is scary. There is a worry and fear that something might be wrong INSIDE your body. If you have access to the internet, you are going to start searching for any and everything about intestinal health and the procedure details.

At this point - you need a buddy. You need a friend or loved one to help reign you in from watching too many videos and to help put things in perspective. A colonoscopy is a test not a diagnosis of something wrong.

The doctor (or more likely a nurse or receptionist) hands you the Colonoscopy Prep Packet of instructions.
1. There are two main options: Magnesium Citrate or the NuLYTELY aka GoLYTELY 
2. The packet of instructions are important because the process starts 4 days before your scheduled test

Before you leave the office it is important to:
-tell the staff if you are diabetic (you will get special instructions on medications and prep)
-tell the staff if you have anal fissures and/or hemorrhoids*

The Magnesium Citrate prep involves buying a few bottles of magnesium citrate (available at pharmacies, usually comes in a glass bottle that is less than $2 a bottle) and consuming it over a certain time period followed by clear fluids - often Sprite or 7-Up is recommended

The GoLytely involves propolyn glycol (ingredient in Myralax), baking soda, and saccharine flavor packets. You add water to the powder in a gallon jug and consume a glass of the solution every 10 minutes till its gone. 

The GoLytely (I sure hope Audrey Hepburn rolls over every time some utters this word) is less preferred because it costs more, requires a prescription, and requires participants to consume a large volume of liquid, pretty quickly. And doctors find that it is hard for people to finish the jug of product. The problem with that is - if you don't completely empty your bowels, the GI doc will not be able to do the procedure and you will have to start over.

So the goal is to get a clear view of the colon, as easily and as painlessly as possible. Because the Magnesium Citrate Prep is "tolerated" better, it is often the go-to. Here is the one catch: if you have openings in your rectum or anus* this prep can be painful, very painful. I completed this in 2007 and the pain was so bad I briefly passed out. So don't be embarrassed. You are literally going to a poop doctor, and you ALWAYS need to tell physicians if you experience bleeding. 

Preparing for the prep
If you follow a gluten free diet, you will laugh at the the instructions are you given. The whole idea is to go on a "low residue diet" 4 days before the test. The day before you are on an all clear liquids diet, and then you consume the "prep juice". The day of the procedure you don't get to eat or drink anything. So the laughing part is at the recommended list of "low residue foods". It reads like a list of everything you are not suppose to do as a grown-up who understands that eating junk food is not a good idea. (Big pardon to those with Chron's who have to follow this all the time.) The shortest explanation is - don't eat fiber, eat super processed crap and you will be ready!

Saltine crackers, white bread, anything with refined flours, pasta, no raw fruits or vegetables, potatoes without the skins. Meat, sure! No seeds, no nuts, no beans, no whole grains, and nothing with red dye. 

Ok. So what, realistically, are you going to eat?

I am not much of a menu planner, but here is where I break that unofficial rule. I know it is going to be really hard for someone like me, who has to take two fiber supplements in addition to eating several servings of fruits and veggies, and one serving of nuts a day, to make this work without making a mistake. I allow myself a few treats (gluten free junk food I have been eyeing  that is totally processed and has no fiber, why yes Udi's I will get your bagels!)

Some canned or very well cooked fruits (no seeds, no peels) are ok
White rice
Processed gluten free junk food (white breads, muffins, crackers, etc.)
Yogurt without fruit (honey is ok or clear jelly, steer clear from jams)
Ripe bananas
Clear juices (no pulp, no fiber)

This list can seem rather depressing, but with a little creativity, it is workable. 

Risotto with mushrooms (maybe with some tarragon or thyme)
Chicken soup (well cooked carrots, and onions are ok, fish out the celery and don't eat that)
Rice pudding
Cheese and gf crackers
Applesauce (you can jazz up the canned stuff with a sprinkle of cinnamon)

So if you are looking at this list, you realize that it is likely to make you constipated. Plan for this and have your favorite non-fiber laxative available. 

Day before test
Ok. So you have made it through the low-res diet phase and now it is all clear liquids. I have worked on the day-before-a-colonoscopy and it is possible to do if you have a job that does not require you to do much in the way of movement (aka you have a desk job). But know that you are going to be a bit sluggish and tired. Your whole goal for the day is to stay hydrated. I found that alternating sweet and savory beverages works well. You are also allowed jell-o, just not any with red dye. So black coffee is ok, broth or bouillon, clear juices, popsicle, you get the picture. 

Your paperwork will tell you when you need to start consuming your prep (Magnesium Citrate or GoLytle) and then the fun begins. 

Anyone and everyone who has had a colonoscopy says "the test is fine, its just the prep that is horrible". Let's break down "horrible" shall we?

You are hungry. Your body would very much like solid food, but instead you are going to flood it with laxatives. These laxatives don't taste great. The goal is to pee out your butt. Mmm hmm. That is the desired effect is to so thoroughly clean out your intestines (~20' long) that you no longer pass feces, only clear liquid.

So "horrible" has two main parts:
-drinking stuff that tastes bad
-pooping, and then butt-peeing like you have food poisoning*

*If you have actually had food poisoning, it is not nearly as bad. There is much less stomach cramping, but that sense of urgency, of I NEED A TOILET RIGHT NOW, that is the sensation I am talking about.

Personally, I think the worst part of the prep is the sensation that not matter how close I am to a toilet I feel like I won't be able to make it. The sensation to move your bowels is that strong. So, if it is possible, claim a toilet as your own. If you have a shared living space, you need to let your roommates know. You may not want to, but they at least need to understand that you have claim to the thrown for several hours, no questions asked. 

All of that said, most people do not poop their pants. If you are worried you can buy a small pack of adult diapers or place a menstrual pad in your underwear. Again, it is likely to feel like you will, but you most likely won't. 

Ok, so what got me all hot and bothered about the recommendation to "keep a book in the bathroom" is the fact that it is unlikely you will be up for reading. Perhaps you will, but this is the time for trashy magazines full of pictures. Do not queue up your favorite movie to watch off-and-on during this. You want something easy, light, and meaningless. You will want something to distract you, but you don't want to forever link wonderful cinematography with discomfort. (read - America's Next Top Model, not RuPaul's Drag Race.) 

Before you start drinking your "prep juice" put on some comfy clothing. Your pants should have the smallest amount of limitations between you and freedom: velcrow, snaps, or elastic waistbands are your friends. I am serious. 

If you read your prep packet of info, it likely recommended you purchasing baby wipes. The idea is to be as gentle to your bottom as possible. While the wipes are nice, and flushable making things easier, don't go overboard with them. Once you start emptying your bowels, you will be doing it a lot. So what is more important than damp wipes designed for a delicate butt, is technique. 

You do not want to wipe your ass, you want to blot it. 
Try to think about it like cleaning a cut. Very gentle patting motions. This is also the time to buy the nicest toilet paper you can find. If there is such thing as 7-ply, you want it. Use what you need but be mindful of what your toilet can handle. This is not the time to realize you need a plunger - have one on hand.

A great recommendation came from the interwebs - zinc oxide ointment. You know, the stuff for diaper rash. It really helps with irritated tushes. You can apply it after ever sitting session on the royal throne to help prevent and quell the discomfort. 

In between doses of the "prep" you can suck on a lemon to help with some of the nausea. Others recommend swishing your mouth out with ginger ale. Try whatever works. I have never puked, but there is a bit of a sea sick feeling that can sometimes happen. (You can also press on the insides of your wrists to alleviate some of the discomfort)

You are nearing the home stretch. You will not want to drink more liquids, but drink you must. You won't get to have any in the morning and the more liquids you can keep in your system the less dehydrated you will feel. I put a post-it on my fridge (where I normally get a morning glass of water) to remind myself to not do it.

Day of the colonoscopy
1. You are a rock star! You made it! Your job is done and now it is up to the nurses and doctors to do their job
2. Bring a list of your medications and allergies to have with you. Your doctor probably has them, but it is good to have a second copy, and note your last does of each medicine.
3. You have to have a buddy to give you a ride home, or ride home with you in a cab - this is MANDATORY 

So off to the hospital you go. If it is possible do not drive yourself. You are going to be really tired, thirsty, hungry, and if you normally have a morning cup of coffee... you are probably going to have a nasty head ache and be craving your first (or second) cup. 

Once you arrive, you will get checked in. You will have to recite your name and date of birth a few times, and it will get you a hospital bracelet. Here is a great time to make sure they have your medication and allergies up-to-date. They will also ask you for the name and phone number of your ride home.

You will then be asked to remove all of your clothing and don a "johnny". If you are lucky you will get 2! The first one you can put on backwards (ties in the back) the second one you can wear like a robe and keep untied, with the strings in the front. You will get to put your personal belongings in a cubby or locker. Some places offer locks, not all do. It is great if you can give your ride your phone, wallet, keys, etc. to remember for you. 

You then get to lie on a gurney and wait. After a bit, a nurse will put an IV in your arm or hand. This can be a welcome source of fluids, cause by now your are pretty thirsty. 

The medication given for the procedure is referred to as conscious sedation. You are technically awake and can move and respond to people, but the brain does not make a memory of the time. This is really great because general anesthesia takes a lot longer to wake up from and has more side effects. 

Some people remember parts of the procedure or conversations bits they had, others don't remember anything at all. (The first time I remember trying to "help" the doctors and nurses rushing over to stop me from removing the scope... whoops!)

The procedure itself
The scope being inserted into the anus does not hurt. It is not very large, (half or 1/3 the diameter of a normal poop), the scope is flexible, and lubricant is used. As the scope goes up and around the colon, air is sometimes pushed into the large intestine to make it easier to see. (This can result in some painful, loud, gas later on) If a biopsy is taken, people sometimes pass a little blood or dried blood - your doctor will let you know and how much to expect.

If you are having an endoscopy, which is often scheduled at the same time, the process is pretty similar. A numbing spray will be spritzed into the back of your throat, and a long, thin, flexible tube is run down your esophagus, into your stomach, and then into the beginning portion of the small intestine. Again, biopsies can be taken here too.

"Waking up"
I can remember waking up after the procedure and being offered cookies. No matter how diligent you are, no matter how many times you tell people "I can't eat gluten" not everyone reads charts. I was "awake" enough to say no, but accept the offer of apple juice. I was surprised at how my voice sounded - I was a lot more horse than I expected. Once you keep down some food/liquids, they usually let you go home. (They have already called your ride if s/he is not sitting in the waiting room)

Getting dress is a tricky sort of thing. If you are comfortable doing so, wear clothing with elastics rather than buttons and zippers. I was a little dizzy and for some reason got really confused about how to put on pants. I am assured this is not everyone's experience, but I will shamelessly be wearing sweatpants next time.

When I got home I just wanted to sleep and eat ice cream - at exactly the same time. If you have an endoscopy, its nice to have some cold treats for your throat. I slept a lot, through most of the day. The only restriction is not going to work, not drinking alcohol, and not driving.

The following day I felt mostly back to normal and my voice was nearly there too.

If you had biopsies taken, the results take a few days to a few weeks to get back.

Colonoscopies are not fun, but they are not painful and can save your life! If you have a friend or loved one who needs a push towards getting the guts up to sport a johnny and have pictures taken of their guts - be their buddy. If you are nervous, I hope you are less so now.

If you have made it through a colonoscopy, what other things do you recommend?

*Thank you to everyone who has emailed, posted, and commented about this post. I was a bit hesitant about "going there" but I think it is helpful to be transparent about these things and your words have been very encouraging. 

I also wanted to add that this prep was SIGNIFICANTLY easier for me and I will be using it again next time. Also the zinc oxide butt cream was fantastic and prevented a lot of discomfort. I recommend it most highly.

One part I omitted sharing, was that a polyp was found during this recent test. My pathology results just came back and my abnormal cells were not cancerous. This is very very very good news. But it means I am keeping on the colonoscopy-every-five-year plan to stay atop polyps. Even with maintaining the gluten-free diet, people with celiac disease have a higher chance of getting intestinal cancers. So in addition to eating lots of fruits, veggies, fiber, getting exercise and all the other wonderful things you can do to keep your body healthy - colonoscopies are key!