Tag Archives: Endoscopic Exam

Gut Instinct: In Search of an Answer

My gut has been roiling for the past two months and not because of national politics. I got worried about the persistent pain and the degree to which my abdomen appeared to be swollen, so I made an appointment with a new gastroenterologist.

If you have gut issues, you probably understand how stressful it can be to go to the doctor. An MD is no guarantee the person you trust with your health is kind or even competent. As my mother used to say, there’s a top 1/3 and a bottom 1/3 in every medical school’s graduating class, as well as the top 1/3 and bottom 1/3 of medical schools themselves.

The gastroenterologist who diagnosed me with celiac disease in 2009 did so by mail. A week after the endoscopy I received a form in the mail with the following words scribbled on it: Evidence of celiac disease. Restart gluten free diet.

That’s it?

Continue reading Gut Instinct: In Search of an Answer

Post Test Post: About the Endoscopic Exam

Gluten SamI survived the upper GI endoscopy. Not that I doubted I would: it’s not that risky a procedure, aside from the potential of having one’s esophagus or stomach or duodenum punctured by the endoscope, which is not common because that thing is much more flexible, and, therefore, much less rigid than most of my elementary school teachers.

The whole thing went down in a lovely suite in the labyrinthine Doctors Center at St. Joe’s. It’s easy to tell Emory now has its hands on the place, signage notwithstanding: tunnels, corridors, and bridges connect the disparate buildings one to another, rendering the outdoors and crosswalks moot. Classic Emory. Snaking our way from the parking deck through what used to be the hospital to the right building I felt like an intruder traversing some of the more, shall we say, intimate corridors. No matter. We made it to the assigned suite at the end of yet another corridor on yet another floor.

I shouldn’t have worried about “strangers” providing my medical care. The nurses were the kindest and most gregarious I’ve ever met, and I’ve met quite a few nurses in my years of having multiple chronic and acute illnesses. The nurse who inserted the IV needle did such a good job I have no bruising, indeed, no sign of having had an IV except for a tiny pinprick on the back of my hand. That’s a first. And when tears filled my eyes not because of pain but because of nervousness and gratitude for this opportunity, the nurse rushed and got my stalwart ace driver and cheering-section-of-one, David, to keep me company until the anesthesiologist came in and shooed him out. David was a champ, making me laugh so much I was afraid I’d pull a stomach muscle. He’s extraordinarily gifted in the wit department.

Before that, I had the, ahem, pleasure of being part of the listening crew as an older gentleman was wheeled into the curtain-enclosed “apartment” next to mine to regain consciousness after some lower GI procedure requiring that 24-hour cleanse the day prior. Maybe three minutes after arriving, he began mumbling about a “honey-do” list waiting at home for him.

Then he wanted to know who the woman was at the end of his bed. When the nurse told him it was his wife, he mumbled, “What’s she doing here?”

The nurse and his wife assured him that she was there to drive him home and take care of him. He replied, “She’s got a list of things for me to do at home. She’s come to get me to do them!” I thought I heard him swear then, but I can’t be sure. The nurse assured him and his wife that he wasn’t doing anything except resting for the rest of the day. He said, “I never rest,” at the same time his wife said, “He does that all the time!”

The nurse then encouraged him to expel the air that had been pumped into his lower GI tract during his procedure. He kept mumbling about being overworked and having no time to rest. The nurse again encouraged him to try to push out the air from his gut because his belly was quite distended and would become very painful if he didn’t. The gentleman then quite loudly said he was 72 years old and knew when and how to fart and he didn’t need some woman telling him to fart. When his wife tried to soothe him and encourage him to listen to the nurse, he growled.

“And you! You want me to fart now when all you do is complain about it when we’re home?”

Thankfully, they moved me before he succeeded in passing anything more than his irritation.

The anesthesiologist came into my “apartment” and stopped when she saw my purse and David’s backpack on the floor. She looked at them as if they were sewn together woodchucks and asked, “What’s that?”

David hastily grabbed the bags (I asked him to hold mine during the procedure with the warning not to play with my phone or steal my gum) and said, “Oh, that’s my backpack and Sam’s purse.”

The anesthesiologist then coolly told David to go away.Poor David just slunk away, the bag man unable to de-Fendi himself.

When he was gone, she asked me the usual battery of questions to determine if I was in danger of coding once they put me under. I happily answered “no” to most of the questions: no diabetes, no stroke, no false teeth, no heart disease, no high blood pressure, no one stole my luggage before boarding. Then she, like the nurse, argued with me for allowing a doctor to perform the Nissen fundoplication to treat severe acid reflux back in 2007.

It’s a little late to be telling me I shouldn’t have done it, I thought to myself, as I had to explain yet again how my lower esophageal sphincter had quit working and stomach acid kept refluxing into my lungs and sinuses, causing chronic infections and scarring and how post procedure infections were much less common. When the anesthesiologist said, “Well, the Nissen causes all kinds of other problems,” I not too sweetly replied, “Like not being able to throw up at a moment like this.”

They quickly wheeled me into the procedure room.

The room, of course, was freezing. I asked for another blanket just as the room started to swim. I remember asking the anesthesiologist if the room was supposed to be blurry and she said something to the effect of, “Poppies make you swim,” or at least that’s what I thought she said as they placed the block in my mouth and told me to relax.

I don’t remember having that moment of panic as the icy sedative crawled up my arm. Instead, I felt a weird floaty feeling as the room started to disintegrate. They told me to close my eyes so I wouldn’t hurt them and I remember thinking it was a funny thing to say because I hadn’t planned on opening them at all.

I do remember meeting the doctor who was to perform the procedure. He wasn’t wearing scrubs, but, rather, a tie and some expensive suit trousers. I think he wore glasses, too, but I saw him for all of one minute so I’ll never be able to pick him out of a lineup. He seemed nice, even though he asked me why I was doing this when I seemed so healthy. “For schience,” I think I said.

Next thing I remember I was running for the door. I had to find the passage back to the place I was before.

No, wait, that’s Hotel California.

I regained consciousness some time later. The clock said a half hour had elapsed. No one tried to school me in the finer points of air expulsion, thank God. They did tell me to drink water, which I managed to spill on myself. I remember feeling like I was in Hotel California when the doctor came in to tell me my gut looked really good. He said my small intestine looked normal but I did have too much bile in my stomach. He took biopsies for microscopic examination, which is where they would find the evidence they need either to advance me in the clinical trial or cut me loose.

Normal. Normal! I have a normal upper small intestine! When was the last time someone said that? Had someone ever said that? Not that I could recall. As I sit here now, typing this, I marvel again at that word: normal.

ScallopingWhen I was diagnosed with celiac disease in October 2009, the endoscopy showed “severe scalloping and nodularity” in the small intestine. That was evident in the pictures they gave me as souvenirs from the trip through my alimentary canal. You can see the damage in the pix from diagnosis showing “scalloping and nodularity.”

And here are the pix from this round. Endoscopic Pic 2014It’s a miracle. The gluten free diet works! It really works! And my body works! (Full disclosure: I also became alcohol-free and this being poison free really has paid off).

So now I wait to hear the results from the biopsies, but either way I win. If there is enough damage to the villi, I get assigned to one of the treatment groups. If not, I still win because I now know how powerful the gluten free diet and gluten free living are.

This makes me think of the people I’ve known who had diagnosed celiac disease but who said being gluten free 100% of the time was too hard. They said they cheat sometimes because they feel like they deserve a break. A break from what? A break from healing? A break from not being poisoned, which means a break so they could be poisoned? When the gluten free diet can produce these kinds of results, why on Earth would someone deliberately ingest gluten?

Maybe they don’t really understand how important it is to be 100% gluten free 100% of the time. Maybe they don’t realize how much better they can be, how much healthier they can be and how much better life can be. If you don’t believe my words, look at the pictures, and if you don’t believe those, go get your own set of interior shots pre- and post- gluten free. The results are well worth it.

Procedural Depersonalization of A Lab Rat

cropped-pen-and-heart.jpgI love anticipating but don’t like waiting. That’s why as a kid I ate around the edges of a Nutter Butter. I’d slowly nibble away the cookie until all that remained was the peanut butter cream, which I then just as slowly licked off the tiny island of cookie left underneath. The cookie was okay but the cream filling was the real treasure, the payoff worth delaying and then savoring.

When it comes to travel and medical procedures, that’s not the way the cookie crumbles. Anticipation evaporates and anxiety solidifies in its place. That’s where I am now: getting solid with anxiety.

This Thursday I go in for the upper endoscopy as the final pre-test phase in the clinical research trial of a pharmaceutical treatment for celiac disease. The doctor’s office called last week to confirm the date and time of the procedure. The scheduler who called said, “You’re a research subject not a patient so a lot of what we would tell you before the procedure doesn’t apply.”

Ouch. She might as well have said, “You’re a lab rat, not a real person, so don’t worry about the risks or the dangers or follow up care. Just show up and leave the rest to us.”

As I’ve frequently mentioned, this will be my fifth endoscopy. I know the drill, know the routine. I know from experience that it’s not really painful: the greatest discomfort post-procedure is a sore throat from having a flexible tube jammed down the esophagus, through the stomach and into the upper part of the small intestine. Piece of plastic cake. I won’t feel them tear out tiny pieces of the intestinal lining so they can measure the damage to the villi.

If they put the IV needle in correctly, that won’t hurt much, either, although I’ve had an IV insert go wrong during surgery. When I had surgery to treat endometriosis way back in ’91, they didn’t properly tape the IV needle in the vein in the crook of my elbow. I remember thinking it hurt and I should say something about it just as the nurse told me to count backward from one hundred. I don’t even think I said “Ninety-nine.” When I regained consciousness post-surgery, my arm hurt fiercely. I looked down to see it was badly bruised and swollen. Sometime during the procedure, the needle came out of the vein and filled my arm with blood, saline and anesthesia. Oops. I guess they noticed and fixed it during surgery because I thankfully never woke up in the OR.

I don’t anticipate that happening, nor do I imagine anything else going awry, but I’m still anxious. Why? I’ve never met the doctor performing the procedure. I’ve never been to his office, never met his nurse or anyone else on his team. In three days I’ll report to a perfect stranger, replace my clothes with a swath of one-size-does-not-fit-all hospital gown with the circus tent ties in the back, and then let myself be put to sleep so said stranger can stick a tube down my throat and perform whatever he needs to perform to document damage from disease, all in the name of science.

It’s a bit daunting. I don’t much like strangers bumping into me in the mall. I really don’t like casual acquaintances hugging me or otherwise invading what my niece calls my “bubble” (personal space). And yet here I am voluntarily surrendering my consciousness and my body so science can advance its knowledge, understanding, and treatment of an incurable chronic disease.

It’s made me a little squirrelly. I don’t want to leave my house today. I want to stay here with my furry office assistants and take care of my work without having to negotiate traffic and people. I actually canceled a lunch meeting scheduled for today because I felt the strong need to be in control of at least something before I turn over my physical being (and my consciousness for at least fifteen minutes) to complete strangers who will take a lot of information from me but only share a small portion of it with me. Most of the information will be for their benefit–and the benefit of the growing celiac population at large–not for mine.

Don’t worry. I’m still committed to doing my part to help improve the quality of life and health of people like me with celiac disease. I’m just realizing that there are hidden costs.

I hadn’t thought until now how different this would be from having a procedure to inform or advance my own medical care. I hadn’t thought how depersonalizing this would be or how much that would bother me. It hits me harder, I think, because of the time of the year: this month is the anniversary of a terrible crime twenty-one years ago which stole my identity, my body, my sense of safety and security, and nearly my life.That, I think, makes the required surrender for this procedure just a bit more emotional.

It suddenly bothers me that no one wants to know my insurance information. It feels wrong that the doctor won’t come in to reassure me before or after the procedure. I won’t get a nice letter or a follow up visit explaining the results and what I should do next to improve my health.

What I will get is a gift card to compensate me for my time and my intestinal tissue. You’d think that would be like yummy peanut butter cream after two sides of a sandwich cookie, but in all surprising honesty, the gift card seems like one of those flat, wrapped Biscoff cookies they serve on planes. Impersonal. Bland. And not at all satisfying.

What I have to remember is that I am helping thousands of people, not myself. Potentially improving their health is the peanut butter cream and that’s worth all the bland cookies, i.e., impersonal medical procedures, I need to chew my way through.

This definitely calls for a mango sorbet splurge.  And if you have any other suggestions, let me know!