I’ll start this post with a disclaimer that I do not cherish my role in discussing, writing about, or needing to recall the past when it comes to colonoscopies. I’ll assure you, I’m really not that unusual. However, you know as they say, “Crohn’s ain’t pretty” (I think I’m the only one who says that) and if you’re looking for sugar coating or partial truths you’ve come to the wrong place. There are plenty of other blogs out there. In all seriousness, I have several upcoming topics that I have not discussed with anyone, so imagine my joy that they are all seemingly Crohn’s related. Looking back, my initial posts were largely impersonal debriefs of events, but for this to be meaningful I need to get far more personal. That’s difficult. If you’re one of my amigos reading this you’ll know I don’t really care about what people think of me (it wasn’t always this way) and if I can do something to help someone out I’m going to do it. All the uncomfortably personal posts that I have zero desire to write about will be a testament to that. So here goes. You are not alone.
If you are under 50 and have been fortunate enough never to have to consider this topic, consider yourself lucky and I’m assuming you are here b/c you have a friend or child with IBD. You should read this so that you can appreciate why your friend disappears, why your friend doesn’t want to go out, why your friend misses school, why your friend is pissed off and what your friend’s life is like. Also if you think this will never happen to you, consider that the laws of biology, modern medicine and time guarantee that you will face some invasive/embarrassing examination during your life at the hands of a physician. This is life people, it happens…
Young patients face a unique challenge that their older counterparts do not suffer with as much I suspect, the embarrassment of feeling alone among all your friends. You see as you get older everyone starts taking medication and receiving diagnoses, but during what should be some of your healthiest years, this isn’t the case. That is the embarrassment or resentment of having this diagnosis which requires this procedure, all the while none of your friends have never had to do anything like this. You can see how this could quickly turn into a larger issue. With regard to colonoscopies, I am far more interested in talking about how to wear down this debilitating embarrassment and loneliness a teen feels rather than giving advice on how to do the bowel prep the day before the procedure. Anyone can tell you that. Instead, I’m going to share how I felt and see if it resonates with you.
Let me set the picture of what I was like when I had to get my first doctor. I had a great pediatric gastroenterologist, we will call Dr. X. I was 17, very angry and basically ready to lash out at anyone when I rolled up on Dr. X’s door. To give you an idea, I was later thrown out of the practice for cursing him out. I regret this more than you know, and studying medicine has only increased my regret of what I said. Okay so clearly I was a jackass back then (most 17 year olds are, my brother who teaches high school tells me) and I felt incredibly alone with my disease and above all, my pain. There is absolutely no excuse for my actions back then, but living with pain every day will change you, trust me. When Dr. X told me I had to get a colonoscopy I was pretty devastated. I didn’t tell anyone I was, but I was in a bad place. Those kinds of emotions are compelling me to write this now and knowing what I know now, I wouldn’t be nearly as upset with having with to get a colonoscopy. There are millions of people in this kind of situation.
First, I am going to tell you this notion of being the ‘only one’ who has to get this done is incorrect. I would bet you know another person if not a few who have had GI issues or procedures. They just keep it to themselves. IBD is not the only GI condition and people get upper and lower scopes done all the time. It took me a long time to understand that carrying this “I’m the only one” attitude is simply adolescent stubbornness. When I was diagnosed I was certainly infected with this and anger. This only leads to bitterness, more anger and ultimately true loneliness not what you currently perceive as being the only one. What shook me from this was going to the pediatric outpatient infusion center over and over and over for Remicade. Seeing kids getting infusions laughing and joking around, with diseases that made my condition look like the common cold, got me out of the “im the only one” nonsense. Personally, I’m surprised I spent so much time thinking I am the only one. I think among young people with Crohn’s, this kind of thinking may be common and I definitely thought I was the only one but I wasn’t, I’m one of 1.4 million Americans, only Americans, with IBD.
To me its obvious colonoscopies are difficult psychologically for young people for a few reasons. As I’ve described it was tough for me personally, your doctor probably won’t talk about any psychological implications (a realm most physicians are uncomfortable discussing) and because of an interesting interaction I had during my time doing research. I had the fortune of following patients and I was able to establish rapport with several of them. One young patient, who knew I had Crohn’s, confided in me that they had just been diagnosed with ulcerative colitis and was concerned about needing to have a colonoscopy. I consoled them and tried to encourage, explaining it would be okay. They ended up actually asking if I could be with them throughout the procedure. I talked with my boss and before I knew it I was in the colonoscopy suite consoling a young patient. I literally saw myself in this patient, young and scared and just wanting companionship. There are a lot of us out there people, and a hell of a lot of bravery I saw in that kid.
Thinking about it now this patient taught me the importance of sharing experiences with others. If you’re a parent or a friend who has had a colonoscopy or similarly intrusive (or embarrassing as the kids call it) procedure DO NOT HIDE THIS FROM THE PATIENT! If you haven’t then find a grandparent or a support group. This sense of comradery can really help teenagers not feel out of place and just be normal, I have witnessed this first-hand.
As for the embarrassment of the health care team seeing you like this etc well to be honest no one is really looking at you that much during the procedure and you’re almost completely covered with blankets to keep you warm. Everyone is focused on monitors or the screen where live images from the scope are being projected, so don’t worry no one is really staring at you. No one’s ass is that good, not even all you people taking “belfies” (a term I just learned from a younger sibling-‘a butt selfie’). After your procedure is done you won’t feel anything so that’s not something to worry about and you are basically put to sleep during the whole procedure so you won’t remember a thing.
My grandmom adamantly claims that a colonoscopy is easier than going to the dentist, I will avoid her dentistry practice here on out. I wouldn’t go quite that far but I will tell you it’s really not bad at all. You’re put to sleep, feel no pain and aren’t even really looked at or exposed at all so don’t worry you will be ok. More difficult was the emotions related to going through the procedure.
When you’re done with the procedure and back to school etc and people ask you where you have been tell them whatever you want. Maybe you saw a dinosaur on your drive into school and had to go film it for National Geographic, or you went off to go ride sharks for 72 hours, do what I did, or be a bigger person and risk telling them the truth. I told everyone I was sick and looking back I wish I had the courage to tell them what I truly was up to…being knocked unconscious, getting a colonoscopy and waking up to flirting with basically every nurse in the hospital during my stupor. If you have that kind of confidence and honesty early on I would be thoroughly impressed, and I think your friends would too. Do you flirt with nurses, or anything else that’s goofy waking up? Send me an email and we’ll make a good list.
There are few things that so needlessly strike fear into man’s heart (yes as in all of mankind) like a colonoscopy. I’ve read about it all the time, and actually seen in personally with men/women over their 50’s who delay, delay and delay out of fear. These folks may be comfortable playing with their lives but I’m not, so I’m glad I got used to having a colonoscopy at a young age. As I stated earlier, most of the reasons people fear visiting the colonoscopy suit comes back to misguided personal reasons..
I will admit that the prep for the procedure is not fun so here’s what I got.
How to Prep:
Let’s say you have procedure on a Wednesday. I have started doing my own personal pre-prep day that starts on Monday. You should be scheduling your colonoscopies for the earliest time possible to begin with so I am going to assume you are doing that. That Monday I will go out buy my Gatorade (which needs to go in the refrigerator right away) and gum for Tuesday. Also on Monday, I start changing my diet to set up a smoother Tuesday. I only eat bland and soft foods, obviously nothing red and no huge meals. I will get the beef broths and things like that going on Monday. This “pre-prep” day will make Tuesday much easier. If you go out and have a ton of huge meals on Monday you are going to have a rough Tuesday. I would also sleep as much as possible on Monday night going to bed as early as possible and sleeping in Tuesday morning, because you SHOULD NOT GO TO SCHOOL ON TUESDAY (I DON’T CARE IF YOUR PREP STARTS AFTER SCHOOL HOURS). You are doing this for a reason just wait.
So on Tuesday your Gatorade should be very cold, which is how you want to mix the prep and drink everything. Warm Gatorade with the prep is horrible and not something you want to experience. There is no trick for drinking this stuff, I just did it as fast as possible and just chug it down. Your stomach will start feeling reallllly quesy which is obviously the point. The faster you finish all the prep the better was my philosophy so I just kept drinking. When you finish the prep steele yourself my friend and get some magazines or something for the bathroom, that’s just the facts of the matter. Personally, the night before a colonoscopy I do not sleep. You’ve taken a lot of medication and its really easy to have an accident while you sleep and to me it just wasn’t worth it so I would stay awake (hence all the sleep the Monday/Tuesday morning. Again I’ve been told im unusual so pick and choose anything that may help you from this.
The colonoscopy is important as it will likely be how your doctor establishes your diagnosis by taking biopsies (little pieces of your GI tissue) and looking for types of inflammation common to Crohn’s disease. It’s also really important though psychologically that you don’t feel alone or like no one has ever gotten this done before so I would encourage parents to be open with their experiences and help your kid out. Nothing is worse than a parent who says something to the effect of “oh that’s gross” or “I never want to get one of those.” So parents and friends, stand and support your friend, and patients…never forget that you are not alone in having to deal with difficult situations at a young age.