doctor putting on surgical gloves before a procedure

As a person with chronic gastrointestinal problems, I have undergone many probing and scoping procedures. Before undergoing my first esophageal manometry, a procedure in which a pressure-sensing probe is inserted through the nose and down the esophagus, I remember that I wished there had been more firsthand accounts I could read about what to expect from the procedure. This piece will be the first in a series of pieces which will delve into what it is like to undergo different medical procedures I have personally had to get done. Through this series, I aim to help demystify certain medical procedures for other patients who have to experience them.

 

I chose the esophageal manometry to be the first procedure that I detail because I remember it as being a particularly difficult procedure for me and because of the nervousness I felt before getting my first one done. It is important to note that every hospital is different, and my experience with the procedure may not match up exactly with the experiences of everyone who has had it done. Here’s what to expect when undergoing an esophageal manometry, based on my own personal experience:

1. The technician will choose which nostril to insert the probe into and may give you a numbing spray.

Before the probe is inserted, the technician will likely ask you if you have any conditions (such as a deviated septum) that may influence the ability of the probe to be inserted. The technician will choose which nostril the probe will be inserted into. A numbing spray may be injected up the nostril before the probe is inserted, depending on the hospital you get the procedure done at. During an esophageal manometry, it is also typical for a patient to wear their own clothes as opposed to being given a hospital gown. Before the probe is inserted, the technician may give you a towel to put over your clothes to prevent them from getting messy during the procedure.

2. The probe will be inserted into the nostril and guided to the top of the throat. The probe will then be guided down the throat and into the esophagus. During this step you will likely have to help by swallowing water.

This step was by far the most uncomfortable for me personally. Having the probe guided to the top of the throat was fairly easy for me to tolerate. The trouble comes when the probe is inserted down the throat and into the esophagus. Because the probe comes in contact with the back of the throat, it is common for the patient’s gag reflex to be triggered. This was the case for me personally, and I found it difficult not to throw up. It is also necessary to swallow the probe during this step to ensure that it goes down the esophagus and not the windpipe. When I had the procedure done, I was given a cup of water to drink to ensure that I swallowed. The good news, however, is that once the probe is fully inserted and stops moving, it is easier to tolerate. Once the probe is in place, it is in and does not need to be adjusted for the rest of the procedure.

3. After the probe is fully inserted, it will be taped into place on your cheek and/or nose and then calibrated. You will also likely be asked to lie down on your back.

Once the probe is in place, the technician will likely tape it to your face to prevent it from moving. Before actual data-collecting trials could be completed, I was asked not to swallow for a specified amount of time to allow the probe to be calibrated. This step can be harder to complete than it sounds because the feeling of the probe against the back of your throat can make you reflexively want to swallow or gag. I personally found that it helped to hold my breath during this step to prevent myself from swallowing. Do whatever works for you. After the probe is calibrated, you will likely be asked to lie down. This is also harder to do than it sounds because it can be uncomfortable to lie horizontally with the probe in place.

4. During the data-collection stage, you will be instructed to complete about 10 swallowing trials. You will usually be required to swallow liquid for these trials, though in some cases foods like applesauce may be used.

During the data-collection trials, the technician will measure out a portion of liquid (usually water) and feed it to you using a syringe. You will be told when to swallow. After swallowing the liquid sample, you will be instructed not to swallow for a specified amount of time so that the trial can run to completion. During the first time I had this procedure done, I was only given water during these swallowing trials. When I underwent the procedure again at a different hospital, I was also given applesauce and a sports drink during some of the trials. Each hospital that administers the procedure has its own methods, so some differences in experience can occur.

5. When all of the trials are completed, the technician will pull the probe out.

Once all of the trials are completed, the end is finally in sight, and the probe will need to be removed. During the two times I had this procedure completed, the technician pulled out the probe quickly using one continuous motion. This step was much easier for me to tolerate than the insertion step was.

While an esophageal manometry can be a difficult procedure to tolerate, it can be important to complete if your doctor has concerns about the muscular functioning of your esophagus. This procedure can be used to diagnose motility disorders like achalasia and esophageal hypomotility. It is also commonly performed before a patient is administered the 24-hour pH probing test used to diagnose acid reflux or GERD. If you are scheduled to get the 24-hour pH probing procedure done after the manometry, you can take comfort in knowing that I found probe used for the pH test to be much thinner and easier to tolerate. Best of luck if you need to get this procedure done soon.

This post originally appeared on Spoonie Musings.

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Thinkstock photo via Wavebreakmedia.

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Remember that time
That time you had the flu?
Couldn’t feel worse —
Ya, I’m sure that’s true.

You’re nauseous and you’re weak —
Haven’t eaten for days.
You want it to be over.
You pray it’s just a phase.

You’re sweaty and you’re hot.
You can’t get out of bed.
If you didn’t have a pulse,
You’d swear that you were dead.

Your stomach’s doing flips.
You can’t keep down your food.
When you can’t take anymore
Your friend says something rude.

“Come on, you don’t look sick.
You’ll feel better when you’re out.
Just take this vitamin and
You’ll be healed without a doubt.

“I’ve felt nauseous before.
It’s really no big deal.
Some exercise will do you good
And a nice big meal.

“You’re looking pretty thin.
You need to eat some meat.
Let me fill your plate.
You really need to eat.”

“I couldn’t eat a thing,”
You hiss through your teeth.

“That’s just in your head —
Just a silly belief.”

Then what’s even worse,
Your doctor also said,
“No, you’re really fine.
It’s all just in your head.”

How would you feel
If no one believed you —
When you felt so sick
But no one thought it true?

Could you go to work?
Could you do it every day?
When you could barely stand
For eight hours, would you stay?

What if it never ended?
For some it never did.
The stomach flu continues
Yet our illnesses are hid.

What this really means
Is people cannot see
How sick we really are.
We look like you or me.

But underneath it all
We’re fighting for our life.
And what we don’t need
Is all your added strife.

Maybe we don’t look sick —
Maybe not to you.
But remember back to
That time you had the flu.

Well imagine if
It never went away.
That is gastroparesis —
Stomach flu every day.

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Thinkstock photo via Mila_1989.


As 23-year-old dance teacher Raven Walton competes on CBS’ “Big Brother” this summer, she’ll be fighting for more than the $500,000 prize. She’s also raising awareness of her chronic illnessgastroparesis, and the gastric pacemaker she uses to treat her condition.

The Arkansas native was diagnosed with gastroparesis at 16. In a pre-show interview for CBS, Walton said it’s possible to actually see her pacemaker in her stomach. She’s asking “Big Brother” viewers to use the hashtag #PacerPower when discussing her on the show on social media.

“Pacer power, ya’ll!” Walton said. “It gave me a second chance at life. And it’s my second heart.”

Gastroparesis is a chronic digestive condition that literally means “paralyzed stomach.” The stomach does not contract normally, preventing digestion of food and leading to symptoms like nausea, vomiting and malnutrition. Though the condition currently has no cure, treatment options include diet changes, medication and in some cases a feeding tube.

The gastric pacemaker, or gastric neurostimulator, is a relatively new treatment in which a small battery-powered device is implanted under the skin and connected to electrodes placed on the stomach. Electrical impulses stimulate the stomach. Again, gastric pacemakers are not a cure and are not effective for everyone with gastroparesis, but some patients find one can help improve their symptoms. Walton’s battle to afford a gastric pacemaker was featured on CNN when she was 15.

Like most people with gastroparesis, Walton wants to raise awareness; in a feature about Walton that aired on KTHV 11 last year, she said she’s hoping gastroparesis can some day have an “ice bucket” moment (referring to the once popular Ice Bucket Challenge). How she’s feeling fluctuates every day, and she knows she may not always be able to do things like dance, so she’s trying to fit in as many experiences while she still can.

“I know one day eventually I won’t be able to do all these things. I know my disease is going to progress to where I can’t. So that’s why I’m doing it now,” Walton said.

Walton’s illness will also influence how she spends the money if she wins — she told The Hollywood Reporter  she isn’t able to have children because of the pacemaker and “different circumstances,” so the first thing she’d do is freeze her eggs.

“[The show] is bigger than me. It’s my future. I’ve been through a lot with my disease and it’s taken a lot away from me growing up,” Walton said. “This is my chance to take some of that back.”

“Big Brother” airs Sundays and Wednesdays at 8/7c and Thursdays at 9/8c on CBS.


Many people seem to struggle with some sort of insecurity when it comes to weight…but with gastroparesis it’s a unique type of insecurity. You worry about getting too skinny because if you do, people think you’re sick again. You worry about losing weight from your illness and people saying, “You look good.” You worry about gaining weight and people mentioning you should slow down on your eating.

Size always seems to matter with this condition and it can fluctuate. From gaining weight to losing weight and repeat, over and over again. Your clothes never fit you just right as they did before you got sick. Some people who’ve had it their entire lives never have clothes that fit properly. Weight seems so superficial, but having the “perfect clothes” and the “perfect body” has become an ideal.

 

Gastroparesis can hurt your self-image. You try your best to ignore it, but the insecurity always lingers. You wonder if you should eat more or eat less, even if it hurts your body, just please others. To everyone struggling with this, I know how it feels and it’s unfortunate.

Try your best to not listen to the comments about your weight. Block out the negativity even when it seems impossible. Tell people to stop talking about your weight. Try not to be someone else with a different body. Just be you and try to be as healthy as possible. And even when you don’t feel like “you,” you’re still beautiful. Don’t let anyone take that away from you.

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My one year anniversary of getting diagnosed with gastroparesis happened on May 12th. One year of knowing what was plaguing my body. Leading up to this day I was worried I would be a total wreck emotionally. Three days earlier on May 9th, I had a huge exam that had been causing stress for me and my classmates for a while. Having May 12th looming over my head didn’t help in the slightest. It really started to get to me. Thinking about how much worse off I was, how I may keep getting worse, and not knowing the future. The GP diagnosis blindsided me completely in 2016 and was a lot to think about. Especially as so many fears had poured into my head that night after the diagnosis. In the midst of all of this near the anniversary, I got this text from my friend:

“I think you have had a lot of wins, and it is best to focus on those instead of the troubling things that have come up.”

 

It is beyond simple to let the wins slip through the cracks when day in and day out you are stressed, nauseous, in pain and tired. I can get stuck in the monotony and negatives of dealing with this. When you are in the trenches of living with a chronic illness, you can live day to day waiting for things to ease up a little. It is easy to focus on how things might get worse or worry about what your condition will be like in a few years and how that could ruin your life. I know I get stuck in that occasionally, especially with flare-ups. But you have to look back and find your victories, notice your conquered mountains, look to all the moments of sunlight and joy and just simply celebrate the wins.

For me one of the big “wins” was having survived my first year of PT school when it seemed like body was working against me and trying to derail the plan. I have many amazing things set up for the next year. I graduated college a few weeks ago. And even beyond the big things, I had tiny wins that were worth celebrating too. Like enjoying a night out with friends even though I couldn’t eat.

Find the little things, find the big things, write them down and keep a list. On days where it gets hard or scary, look at that list and remind yourself of the amount of times you have won. Remind yourself that deep inside is a superhero fighting and winning on a daily basis. Chronic illness can’t stop you from finding those wins. They are much more joyful and a better focus than the negatives of dealing with a malfunctioning body.

Choose your favorite win and the next time you don’t think you can do it, remind yourself you can. You’ve done it before and will do it again. Plans change and life causes things to turn upside down, but that will never change how much you have already done and will continue to do. Remember, focus on your wins and celebrate them!

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Thinkstock photo via dmbaker.


Nausea, vomiting, dry heaves, pain, exhaustion and malnutrition are just some of the many symptoms I deal with having gastroparesis.

Gastroparesis is paralysis of the stomach muscles, so when I eat, the food just sits in my stomach way longer than it would for the average person. It will sit in my stomach and rot, make me nauseous and make me very bloated. A lot of the time it sits in there so long my body will eventually reject it and I throw up. Eating with gastroparesis is like Russian roulette – you never know if you’re going to go into a flare and get really sick or be OK.

 

My body is trying to starve me, eating becomes scary, I feel hungry but I am too nauseous to eat. My bed becomes my prison because I feel so awful that I can’t leave it. Imagine having a really bad stomach flu that just never went away – that’s my life. I start to miss food, but I associate food with being sick. It’s no way to live. It gets extremely lonely, being sick constantly and always in bed. I don’t get out much or interact with a lot of people, minus doctors and nurses. It’s emotionally and psychically exhausting.

There is no cure for gastroparesis and very few treatment options. I’ve tried many different medications, different surgeries and right now I’m using a jejunostomy tube for feeding. A jejunostomy tube is a feeding tube that is placed in your abdomen and goes into your small intestine, so it bypasses the stomach, which is the problem area. My surgery options right now are a pyloroplasty, which is where they cut out part of your stomach to widen the pylorus so your food can empty into your duodenum. The other is a gastric pacemaker which is an electrical device that goes under the skin and has wires that connect to your stomach and send electrical pulses to move your stomach muscles, in the hopes of reducing nausea and vomiting. Both surgeries are invasive and not guaranteed to be helpful.

The truth is awareness and research for gastroparesis is minimal. We should have more options. We are struggling, we are fighting, we shouldn’t be invisible but we tend to be. I even occasionally have to explain to the doctor what this disease is.

collage of photos of a woman in the hospital with gastroparesis

Gastroparesis is awful, and it’s a giant question mark in my life. Especially when it is diagnosed as idiopathic, which means doctors don’t know what caused it. I don’t know why I was fine for the majority of my life then out of nowhere my stomach muscles just stopped working. We need to raise awareness and hopefully more research will be funded to help lift the giant weight off gastroparesis warriors.

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