GI Motility Focus - Cyclic Vomiting Syndrome - Dr. Richard McCallum

The late Dr. Richard McCallum discusses Cyclic Vomiting Syndrome.

Transcript

SPEAKER_00 0:40

I'm so glad you were able to come today to our program to hear Dr. Richard McCallum talk about cyclic vomiting syndrome. My name is Mary Angela de Grazia de Cucci. I'm a longtime motility patient, and I'm also humbled to volunteer for the Association of Gastrointestinal Motility Disorders or AGMD. Our organization serves as a resource for GI motility disorders. It also is a clearinghouse for those in the medical, scientific, and nutritional communities. And of course, it is a form of support for patients and their families. We are so honored to have Dr. Richard McCallum here today. Dr. McCallum, the eminent GI motility doctor, he has been with our organization since 1991, which is the inception of AGMD, and he has been dedicated to our organization from the very, very beginning in so many incredible ways. So, Dr. McCallum, thank you so much for being here, taking the time, and for your dedication to AGMD and all your patience. Dr. McCallum, can you just talk to the audience and inform them a little bit more about your background?

SPEAKER_01 2:07

Well, Marion, it's great to be with you again and uh continue to be part of your organization. Yes, I've been doing GI motority research for probably 40 years. And uh I I could see I have to call you back. Okay. Um, and I particularly want to uh let me just finish up this telephone call here. Hang on. All right. Um just said I've been involved with GIMO TOERTY research for about 40 years, and particularly um recently with the NIH, we focused on the entity of gastroparesis. Um, but I see patients with nausea and vomiting from all causes. Actually, I just left my clinic and a patient came to me from Lubbock, Texas, with this classic story that fits the condition I'm going to talk about today, called cycling vomiting syndrome. Another cause of vomiting, which is often missed, uh misdiagnosed, and not treated properly. So let's review this again. Cyclic vomiting syndrome has been around for quite a while. Go back into the 1800s, um, particularly with Dr. G, who was a pediatrician, and uh in England. It was initially thought to be a pediatric disorder, increasingly been seen in adults, to the point that now it's diagnosed more in adults than in pediatrics. But we do have some rules of the road, and so we try to adhere to some kind of predictable story that can be identified by many physicians. We want some of the following points. They're predictable stereotypical episodes of vomiting. Onset is acute, and duration is usually up to but less than a week. Usually the stream episodes in a year before we diagnose it, but typically it's up to once a month or more because the episodes begin to coalesce or get closer. Between attacks, patients look good. Eating normally, they may maintain their weight because they catch up between attacks. But dramatically, there's an onset of nausea and vomiting and abdominal pain accompanies this situation. Diffuse pain in the abdomen, and it occurs with the nausea and vomiting. Another important history can be migraine headaches in a subset of patients. Migraine is a major precursor of the cyclic vomiting attacks. We look at four distinct phases, patients feeling well. Then there's a very brief period, maybe hours, where there's sweating power, and you feel like you're going to vomit, intense nausea. And then vomiting begins. This can be up to 20 or 30 times a day, even going into dry retching and going on for three or four days, often ending up in the emergency room. And then there's a recovery phase where the patient's vomiting decreases, liquids are tolerated, and nausea improves after five or six days or a week. That tends to happen. So people feel well for periods of time, sudden onset of nausea for an hour or more, a few hours before vomiting begins, abdominal pain, and continuous vomiting for three or four days or longer, and then a recovery phase. CT scans, and whatever else to try to find out about the pain. The duration we talked about between attacks, as I said, you're relatively asymptomatic. Some patients may have intermittent indigestion, irritable bowel syndrome, maybe some dominal cramps or loose stools, constipation. There's a history of multiple ER visits and hospitalizations could date back months to years because they're not diagnosed. The patients come to the emergency room and they're told they have the flu, or they have food poisoning, or they have unexplained stress or something, and they get sent home and they keep coming back and back, and no one makes the diagnosis. Menstrual cycles can sometimes be blamed as well, migraine and stress. So this delays the diagnosis for years, often. Over time, the attacks do begin to get closer, maybe from once a every couple of months to once a month or every four to six weeks. And this can become confusing because as the episodes coalesce, then patients may be diagnosed with gastrophoresis. If anything, slightly rapid, actually. Patients have a unique relief pattern. They find relief from hot showers, hot baths, particularly, and sleep if they can get to sleep. So one of the treatments is sedate the patient with certain medications. And now probably 10% of my practice would be would be cyclic vomiting, if not more. Um, it's now being obviously identified by other doctors as well. And hopefully, patients are not waiting as long to be diagnosed. Unexplained nausea, vomiting, abdominal pain. Diabetes does not have to be present, so we don't have diabetic gastroparesis as a confusion factor, but diabetes can be present. So many things mimic CVS. Does the patient have an ulcer? Does the patient have gastroparesis? Is the pain caused by the gallbladder? Called cystitis. Is there intermittent small valve obstruction causing the vomiting in the pain? So patients end up having endoscopies, gastric emptying tests, CT scans, hydro scans, ultrasounds, and x-rays, small valve follow-through. Could it be something else? Central nervous system, could this be a mass or tumor in the brain? Hydrocephalus explains the vomiting and the headaches. Kidney failure could explain vomiting. Having adrenal insufficiency. Anderson syndrome. Look at the plasma cortisol level and look at the urine porphyry level. Let's look at the clinical profile. These are some studies I did back in Cancer Cancer University of Cancer with Dr. Neiman, my collaborator at that time. We had 31 patients we were following. Overall, the brief dominance of or slight dominance of males, but they have a diffuse other problems. Irrital bowel can be present, diabetes is present, they've had gallbladders taken out because someone thought the pain was due to gallbladder disease. They can have heartburn, gastrosophageal reflux, and migraines. Marijuana use, we're going to get into that's a major component. Anxiety, depression, stress is a major component as well. It's now about to say about over 10% of my patients who come to me have cyclic vomiting. Most of all these patients are in the emergency room. Every emergency room is seeing patients with unexplained vomiting. And they're dismissed, as I said, as food poisoning, stress, migraine, menstrual cycles, and they keep coming back to the emergency room. Sometimes different emergency rooms, different doctors. So no one takes the time to put the pieces together and see that this is a predictable, frequent event. Diabetes does occur, but we don't blame it on diabetic, diabetic gastrophoresis, but patients can have keto acidosis from vomiting. Migraines often beginning in childhood. Family history of migraines. About 30% of patients with migraines have a CDS. We talk about mitochondrial dysfunction, whether it's a genetic predisposition in families. Panic, stress, anxiety, depression, some significant psychological event that is continuing, maybe a combination of events. We feel there's some dysregulation of the neuro pathways that afferent stimulation and efferent stimulation to the brain become exaggerated, and there's an over exact stimulation of these neuroendocrine mediators, and vomiting develops. Some patients can have an autonomic neuropathy, which may be a tip-off. And other patients, if you talked about a smoking marijuana. So there's a syndrome called cannabinoid hyperemesis that's been separated from cycling vomiting. They're closely related, but there's subtle differences. The obvious one is that these patients are smoking a lot of marijuana daily, frequently. But it's also more common in cannabinoid hypermesis, whether it's the relaxation achieved by the hot water, but that's a very predictable story that patients will tell you. Abdurmal pain is diffuse, and as I said, even daily marijuana use is present. Males are more dominant, tend to be younger patients, they have negative tests as far as endoscopy, CT scans, and weight loss is not a prominent feature. So it's a condition called cannabinoid hypermesis, which is different from cycling vomit, and it's an important part of the history. Usually it's going on for years. More recently, I'm seeing it in small amounts of time, one to two years or less. There's some data now that with the legalization of marijuana and the excess of planting and harvesting of marijuana and growing marijuana, that there's contamination with pesticides and contamination with fertilizers that are contaminating the plant and provoking more toxic reactions. It's not just the marijuana, it's this sort of trying to grow it quickly and fertilize it, has changed the toxicity. Another group of patients use marijuana to relieve attacks. That may be okay. And it's important to initiate the standard cyclic vomiting therapy before stopping or tapering marijuana. You need both things to take place to make sure you get resolution, not enough to just stop marijuana. So cannabis and a troll, we believe this of a saturation of a receptor takes weeks or months to get there in a patient, patients who may be genetically predisposed anyway. We think there's now toxicity with fertilizers and pesticides will play a role. So it gets stored for many months in fat, particularly in the brain. This develops sort of pack years of accumulating marijuana metabolites. Can that avoid marijuana decreases gastric empty? So patients that smoke marijuana they may have a better appetite, but they actually have slower gastric empty. So smoking often daily gets cycles or weeks apart. And that's it that's a confusing factor. There's weeks between cycles, and yet patients may claim they smoke marijuana almost daily. So why don't they have more tax? Is there some magic concentration that has to be reached? Or do we see that patients who have attacks of marijuana with marijuana also have stress? And the combination of stress and marijuana is the final trigger for the attack. Or does it take some time once they reach the saturation point in the brain? Does it take some time for the marijuana saturation to get back to that level? Acute many acute treatments in the emergency room. We try to put people to sleep. And in the hospital, we give them IV the razor panel. Inducing sleep and sedation decreases vomiting and pain. At the same time, we have antiometics, fennigan, sofran, regulan. Or if we have to briefly narcotics, we don't try to overuse narcotics emergently. So we need a patient, NPO, IV fluids, the laser pan, one to two milligrams every six hours, soframe, sometimes ballorant for pain, and penetrator, IV. So we give them a full court press for two or three days in the hospital. Then we move into the long-term treatment and prevention. This was first studied by Ray Klaus back in 2006, where he found that tricyclic antidepressants were very successful at helping his patients. He also there's been some literature on propanolol, cipraheptidine, and sumatryptane to clean migraines, and there's some antiepileptic drugs such as capra, uh, which is thought to be helpful. But we've relied mainly on tricyclics. And I've got a study here from uh 2010, way back, where we studied patients uh using tricyclics, usually one to two milligrams per kilogram. So we average Which probably 10 to 25 milligrams is starting dose. And we may go up as high as 250 milligrams at night before bed. But the average dose is probably 50 to 100 every night. And other medicines, the razor PAM for anxiety and panic attacks, giclamine for cramping, tummy pain, irritable bowel type pain, anti-emetics, anti-migraine for those patients, and proton pop inhibitors in some patients. Significant reduction in frequency, ED visits, emergency room visits, hospitalizations, overall well-being is provided, and you have to reach a maintenance dose during that time. So maintenance may be 10 to 25 milligrams at night. There are some people who don't respond. About 13%. And we think in those patients there's a coexisting risk factor we didn't address. Migrary headaches, severe depression, narcotic use, marijuana use. These factors need to be addressed to overcome the group that don't respond to high dose tricyclics. Sometimes hemitryptaline can cause a bit of sleepiness, and I use its cousin, a cousin called nortryptaline. So the highlights that I've tried to present to you is that patients have severe pain, abdominal pain, with accompanying cycles of nausea and vomiting, interspersed with weeks, periods of time when they're in remission. There's a high prevalence of severe anxiety and depression. If you take a history, these patients freely admit there's been a significant psychological event in their lives and continue. Also, there may be subsets of migraine headaches, autonomic neuropathy, and diabetes. But diabetes, this is not diabetic gastrophesis, but perhaps for diabetic control, hyperglycemia may trigger a cycling vomiting event. Gastro empty is normal, maybe slightly rapid. It's important it's separated from gastroparesis. There's impressive and sustained response to high dose amitriptyline. About 10 to 15 percent are non-responders, and they have red flags. They're using narcotics, they're having marijuana use that they've not disclosed to you. More migrant headaches than you were able to identify, and maybe uh having more stress and requiring higher doses of amitryptaline. So you sometimes have to use anti-anxiety medicines, boost bar, dicycline, anti spasmodics, continue with backup antiometics, and use maybe some tremidol from time to time for pain, but we try to avoid narcotics. There's increasing prevalence, greater than 10% of patients now coming to me for unexplained noise involving abdominal pain. Menstrual cycles, I should mention in women, menstrual cycles can be a trigger and can be a situation where you have to give a medicine to block menstrual cycles called luprolide or lupron that blocks menstrual cycles for months. Take a shot every month, and we can find out our menstrual cycles, the major cause of your cycles of cycling vomiting. There's a major need to educate, particularly ER physicians. ER staff are seeing these patients every day, and they're missing the diagnosis, and they're missing the chance to identify therapy and start to prevent recurrence. So I think that's that's my highlights for now. Mary Angela, I hope her audience uh feels like they've uh understood what I've been trying to transmit, and we look forward to some some questions.

SPEAKER_00 27:21

Dr. McCallum, you just answered 30 of the questions that were submitted in your program. But someone did ask about um, they were inquiring if food allergies or diet can serve as a trigger. Is there any connection connection between the food and um CBS?

SPEAKER_01 27:43

No, I really haven't seen that, Mary Angela. No, I think regardless of how careful you are, every month or four to six weeks, out of a blue comes an attack. And uh there's very little warning except the migraines and the menstrual cycles, may be a warning that uh you're going to have an attack, but the nausea starts, and even though you take zofren, finicin, whatever else, it's pretty much unstoppable. You're going to go from nausea into vomiting, and the vomiting will last three or four days. The only hope we have is stopping the attacks, inhibiting the attacks by taking the uh amitryptaline, taking the tricycle.

SPEAKER_00 28:44

Another person asked if the children have um outgrown it, but does that mean that they won't get it later on in life? If children don't have it, if they outgrow it, like they had it as a child, but now they're merging into adulthood. If they outgrew it, is there a propensity to get it as an adult, even though they had outgrown it as a child?

SPEAKER_01 29:12

No, mainly with migraines. If migraines were present as a child, and there's a family history of migraines, that may come back, that may be a risk factor. But otherwise, no, it should not be uh at a higher risk factor to come back in the adult world.

SPEAKER_00 29:34

And you covered this, but just to emphasize, can a person have a GI motility problem along with CVS, for example, gastroparesis?

SPEAKER_01 29:48

I think most of the time, 95% of the time, it's misdiagnosed. So it's diabetics. I saw a patient this morning who's a diabetic, and um they did a gastric emptying, uh, which was normal, but they think it's still her diabetic gastroparesis. Um, I think the only way we could blame diabetes is if the blood sugar gets out of control and you start going into keto acidosis, you begin to vomit. But that's not true cyclic vomiting. So, in general, no, gastropresis alone does not make you more likely to have cyclic vomiting syndrome. No.

SPEAKER_00 30:42

I see. And someone also wanted to know does the treatment last all their lives? So they'll always have to go through this, and when the symptoms start coming, they take the medication. Um just verbalizing.

SPEAKER_01 30:59

I know I start the grammy tripty and go up to start at 10 milligrams at night before bed, go up 10 milligrams every week until I get to 50 milligrams. Then I'll see how they do. I may have to go up to 75 or 100. When the attacks stop, I want I want them to continue to take the amitryptaline, the dose they're on, for a year and have no attacks. If they have no attacks for a year, I begin to taper the amitriptylene 10 milligrams every three months. And the only exception to that would be pregnancy. Amitryptaline is contraindicated in pregnancy. So if pregnancy were to develop, we would have to make a strategic change um in our treatment. We couldn't continue the amitryptaline, but I I want a year of no no e opposites, no episodes, and then I start to taper the dose. The same time with the marijuana, the same time you try to stop marijuana, you can't stop marijuana cold turkey. They're gonna stop it slowly over a period of a few weeks. During that time, I will start amitriptyline, and when you stop it, I continue amitryptaline because I I want to have a background to help you relax. Amitryptaline is an antidepressant and helps relax the brain and the gut. So I want to have amitriptyline when you stop the marijuana to help you continue to stop marijuana. And then sometimes I have to give the razor pan or atavan, because patients have a lot of anxiety when they stop marijuana, or even without marijuana. Patients have a lot of anxiety, and I often have to give them Atavan orally at home as a co-therapy along with the tricyclic antidepressant, along with the um amiclyptoline. So sometimes we do give Ataban or razopan to prevent anxiety attacks.

SPEAKER_00 33:44

I see. Um gastroparesis. I think there must be a dental impact on this, where you're vomiting 30 times a day.

SPEAKER_05 33:59

Right.

SPEAKER_00 34:00

It must be, there must be a propensity towards cavities or gum disease with this until probably it's under control.

SPEAKER_01 34:10

Well, you you sometimes vomit blood, um, and that's because when you vomit forcefully, you may cause a tear at the junction of the esophagus and the stomach, called a Mallory-weiss tear. And these patients may end up having endoscopy when they get admitted. But that's that's not an also, that's a tear from forceful, forceful vomiting. But um, it's it's dramatic. Try heaving, non-stop vomiting. Um it's impressive. Dehydration obviously is the major concern, and um low potassium levels occur. So you have to give IV fluids plus IV potassium is often required.

SPEAKER_00 35:05

I'm gonna open it up to see if the audience has any questions. Would anyone like to jump in? You can put a little hand signal. There's a little raised hand icon, and also um just say your first name. Hi, Letitia. Unmute yourself.

SPEAKER_03 35:29

Can you can you hear me? We can hear you. Okay, so I've never been diagnosed with this. I'm diagnosed with gastroparesis, um, iridus bowel syndrome, but it seemed like I have this. So my question is when I have a flare-up and when I'm constantly, and I don't vomit, I dry heave for because they wrap my esophagus. To coming out out of that, like it's just like they the doctors are at a loss. It's like, what do I do? Coming after the after the dry heating.

SPEAKER_01 36:02

You have gastropresis, you say.

SPEAKER_03 36:04

Yes, sir.

SPEAKER_01 36:05

And what's the cause of the gastropresis?

SPEAKER_03 36:08

Um, they went in, um, it's uh they did a least sun fundivication at first. So he said the opening between my stomach and my esophagus was too big, and no matter what, the acid was going to continue free flowing up. So he went in to repair the hyena hernia, wrapped my esophagus, and I still was having problems. So then he said my gallbladder wasn't working right. And then another doctor said the wrapping of my esophagus was too tight. So I had two surgeons in one. One surgeon took loose the esophagus, rewrapped it, and the other doctor took out the gallbladder. When he took out the gallbladder, he damaged my nerve, which caused the gastropheresis.

SPEAKER_01 36:47

Yeah, so the vagus nerve was damaged when they repaired the honey.

SPEAKER_03 36:54

Yes, sir. Okay, now you have a vagal nerve damage that could that can lead to they don't say it, but I believe it is because like this last flare-up, I could just feel like like spasms on the inside. And I used to feel it before, I mean, I used to feel it when I used to have a flare up of going to the murder room. They would, you know, they wouldn't say it was spasms, they would say it was something else. Or they just didn't know. And they would constantly just treat me with regular um promethazine and zofrine.

SPEAKER_01 37:25

Yeah, you can't have both. So between attacks when you're feeling well, you need to make sure the gastric emptying is slow.

SPEAKER_03 37:35

Make sure it's slow, yeah.

SPEAKER_01 37:37

But that would okay. That would make a diagnosis of gastroparesis.

SPEAKER_03 37:41

Okay.

SPEAKER_01 37:42

And then if you vomit on top of that, then that's that's due to the accumulation of of food in your stomach. So yeah.

SPEAKER_03 37:54

Okay, I did vomit on top of that.

SPEAKER_01 37:56

Are you taking metaclopromide every day?

SPEAKER_03 38:00

I'm taking zoophrin every day. They tried me on the different antibiotics, but I had a reaction to all of them.

SPEAKER_01 38:10

No, uh.

SPEAKER_03 38:12

So I'm not currently taking anything besides the nausea medicine.

SPEAKER_01 38:17

Yeah, the nausea medicine does not empty your stomach.

SPEAKER_03 38:20

Right, it does not.

SPEAKER_01 38:21

So you need to take uh metaclopromide.

SPEAKER_03 38:25

Can you spell it for me?

SPEAKER_01 38:27

As a tablet. M-E-T-O C L O T-R-I-M. Okay, metochlopromide.

SPEAKER_03 38:41

Okay.

SPEAKER_01 38:43

It comes as a spray called gemoti g-i-m O-T-I. A nasal spray. You spray it in your nose, and it's absorbed within five minutes.

SPEAKER_03 38:59

Okay.

SPEAKER_01 39:01

Metaclepromide is called Regland, R-E-G-L-A-N.

SPEAKER_03 39:06

Yeah, they put now, they just put me um on. I just got out of the hospital not long ago. So usually when I'm in the hospital, they'll give me regulin. So I had a reaction to regular where my fingertips went numb and my lip was like trembling. So they didn't put me on it long term. They put me on for a little while and tell me to take Benadryl with it.

SPEAKER_04 39:25

That's okay.

SPEAKER_03 39:28

But I do have some uh regulin now.

SPEAKER_04 39:31

What what what symptoms did you have?

SPEAKER_01 39:35

I couldn't hear you when you took the regular and what symptoms did you have?

SPEAKER_03 39:41

I still couldn't hear you, so I'm sorry.

SPEAKER_01 39:43

Did you have tingling or burning or like tingling and tremors?

SPEAKER_04 39:52

What dose was that?

SPEAKER_03 39:54

Um, just the tingling the tremors and my fingertips um getting numb.

SPEAKER_04 39:59

You like more tea?

SPEAKER_01 40:03

Was that at 10 milligram dose or what dose?

SPEAKER_03 40:09

I can't remember how many milligrams.

SPEAKER_01 40:12

Well, if you have a problem with dragland, you need to take erythromycin. Okay.

SPEAKER_03 40:19

That made me sick as well. Then the only other drug left is called So the antibiotics make me just like continue like dry heaving, and they make me extremely nauseous.

SPEAKER_01 40:33

The only other drug left is called mottigrity. Um stimulates the stomach and the core.

SPEAKER_03 40:45

Okay.

SPEAKER_01 40:45

It's called mottigrity.

SPEAKER_03 40:52

Okay.

SPEAKER_01 40:54

That would be the only drug you could take if you're allergic to these other drugs. Okay. How much how much zopran do you take?

SPEAKER_03 41:05

Um, I just recently cut it down, but I was taking zophren probably every four hours.

SPEAKER_01 41:11

And do your tongue, or is it and I stay constipated, so well, you you can take some muralax. Okay. It's a power. But okay, zophren you can take maybe every six to eight hours.

SPEAKER_03 41:28

Every six to eight hours?

SPEAKER_01 41:30

Yes, not take it as regularly.

SPEAKER_03 41:34

Okay. Thank you so much for this information. Like, I hadn't heard about this cichle vomiting, and I know that's I was experiencing that. Well, do you do you have migraine headaches? I do have migraine headaches, and I had them as a child.

SPEAKER_01 41:53

Well, migraines can cause vomiting. It's not due to so-called psych vomiting. Migraines alone can cause vomiting. So if patients have migraine headaches, we advise them to receive treatment for the migraine.

SPEAKER_04 42:12

Okay.

SPEAKER_01 42:12

Headaches in general, migraine particularly.

SPEAKER_04 42:16

Okay. Can cause nausea and vomit.

SPEAKER_03 42:20

Okay.

SPEAKER_04 42:24

All right.

SPEAKER_03 42:25

Thank you so much. Thank you. Thank you.

SPEAKER_00 42:28

We have another question from um Eva.

SPEAKER_02 42:34

Hi, thank you for taking my question. Um, I just needed a little bit of direction because um I've been having major GI issues for two years. So two years ago, I um had cyclic vomiting for 14 days and was in and out of the hospital. And it was determined that um I also had dysphagia symptoms, and they determined that I had a slip nissin and a hyatal hernia. So they fixed it. However, since they fixed it a year and a half ago, I still have nausea and vomiting whenever I eat and almost regularly. I still have dysphagia with an unknown cause. I have a stricture in my entire esophagus. And um they and I've lost 110 pounds. Now I'm malnourished and dehydrated. And I feel like my doctors keep going in circles, and I don't know what to be asked to test for, what medicines to ask for? I'm completely at a loss with no alleviation of symptoms. Symptoms just keep getting progressively worse.

SPEAKER_01 43:51

Well, did they do an endoscopy recently on your esophagus? If they try to dilate your esophagus or Stricture.

SPEAKER_02 44:01

I um I'm scheduled to see another surgeon next week, but I consulted with Johns Hopkins and Georgetown University in Maryland, and they said due to the um intensity, because I have a stricture from root to tip, that they could offer me a dilation every month for the rest of my life. And I thought that that was really extreme. And they keep telling me they don't know what caused the stricture in my entire esophagus. So I'm not comfortable having surgery every month for the rest of my life if they don't know the root cause.

SPEAKER_01 44:41

Well, they need, you know, I don't think you can have a stricture throughout your esophagus. That that doesn't um that doesn't happen. The stricture tends to be towards the end of your esophagus. It's either caused by when you had the surgery, they may have wrapped you. They put a wrap around the bottom of your esophagus called a undoplication. They may have wrapped you too tightly, or if you have acid reflux, acid can cause a striction. So the narrowing would be potentially at the lower end of your esophagus. Is that where they said the stricture was?

SPEAKER_02 45:33

Initially, but then when they did an endoscopy again a few months later, they saw that my entire esophagus became abnormally narrow and stitured. So that's where it initially, initially where they saw it, but now I'm at the point where my entire esophagus is narrowed.

SPEAKER_01 45:53

Well, there's a condition called eosinophilic esophagitis.

SPEAKER_02 45:59

And that they tested me for that, and I was negative.

SPEAKER_01 46:03

Well, in that case, you need to see a not a surgeon, you need to see a gastroenterologist to look at your studies. We don't see the whole esophagus narrowed. We don't see that. Doesn't happen. We see usually the distal third also is narrowed from acid or from the wrap. And eosinophilic esophagitis is the only condition that would explain narrowing throughout your esophagus. So you need to see a gastropologist to go over the study and make a determination. You definitely don't want to just have surgery. There may be a role for surgery eventually, if it's thought that this wrap is too tight, and that the wrap needs to be undone. You still have acid reflux, you still have burning?

SPEAKER_02 47:12

I do, and I take omezoprol. I've been taking it for two years, 20 milligrams every day, and I still have reflux symptoms.

SPEAKER_01 47:23

And they theoretically they wrapped the end of your esophagus. Is that right?

SPEAKER_02 47:31

Yes.

SPEAKER_01 47:32

Yeah. Well, you have to start with the diet, the dilations. We start with, we go to a very low size, maybe a 10 or 15 millimeter size, and then we build up to a much higher size, where maybe patients need to be dilated every six to twelve months. But um we don't we if the whole esophagus is narrow, the treatment is dilation initially, and B there's a new drug that's replacing a meprazol. Um see if I have the drug here. Yeah, it's called Boquesna. V OQ UE Z NA VOQESNA is a new acid blocking drug that's more powerful than a metrosol. You may want to inquire about getting a prescription for Voguezna V O Q U E Z N A.

SPEAKER_02 49:03

Okay, thank you.

SPEAKER_01 49:06

But you need to see a a gastrologist first and certainly do some basic stuff. Surgery would not be in the picture if your whole esophagus is narrowed.

SPEAKER_02 49:21

You need Yeah, and I've had a couple of doctors tell me you're so severe, you need a feeding tube. And I said, that doesn't help any of my symptoms. That helps me get out of malnutrition and dehydration, but I will still have all of the issues, and I'm not willing to consent to that because if they don't find the root cause, they're just trying to band-aid this.

SPEAKER_01 49:44

Have you been officially dilated yet with dilatis?

SPEAKER_02 49:50

No, I haven't because they can't tell me what's causing it. And um Hopkins and Georgetown tell me I need dilation every month, and that's a bit extreme. I don't want to put my body under anesthesia every month for an unknown period of time.

SPEAKER_01 50:24

Did they say that is particularly tight at that point?

SPEAKER_02 50:29

Initially, yes, but now it's the entire esophagus. That's what my latest endoscopy showed.

SPEAKER_01 50:40

Well, you're gonna have to, then there's gonna have to be a decision made. That doesn't happen. I see I see hundreds of patients. It doesn't happen. So if the wrap is too tight, it needs to be undone. A B, if you're still refluxing, you could try this more powerful acid-blocking drug. But if you don't have eosinophilic esophagitis, uh nothing else can narrow the whole esophagus unless you have a condition called Barrett's esophagus, where there are changes in the lining of your esophagus due to acid? Has anyone mentioned Barrett's esophagus to you?

SPEAKER_02 51:30

No, but I can ask them to check it during my next endoscopy. Thank you.

SPEAKER_04 51:36

Thank you.

SPEAKER_00 51:38

Thank you for sharing that. Um should doctors, should patients go to a motility specialist for CVS or can they go to any general gastroenterologist?

SPEAKER_01 51:54

Most gastrologists have heard of CVS and should be familiar with the treatment. Now it's not, it I wouldn't say you have to go to a motility specialist. It's a pretty well-known entity. It's been very highly publicized recently because of marijuana. Uh, the average GI person should be able to help you.

SPEAKER_00 52:25

And what about primary care doctors? Is it trickling down to the primary care doctor?

SPEAKER_01 52:32

I'd say very unpredictably, unpredictably. I wouldn't rely on the primary care doctor.

SPEAKER_00 52:42

I see. Well, I think that's with some of the motility disorders, too, that um sometimes the the primary care has no idea. But the good thing is if they can refer you to the experts in that field, that will be helpful to the patient.

SPEAKER_01 53:07

This is a sort of fine print. It's probably too much for them.

SPEAKER_00 53:13

The last question that we will have time for is um one patient has dysautonomia and wanted to know if CVS could go hand in hand with that.

SPEAKER_01 53:29

No, no, this dysautonomia. Um we see gastroporesis with dysautonomia. Um, sometimes with with Potts syndrome, which accompanies the dysautonomia, we see either gastroparesis or rapid empty, but we don't we don't necessarily even think about cycling poverty.

unknown 53:59

Okay.

SPEAKER_00 54:00

Anyone else have a quick question? I know. Are there any quick questions? Um, I thank all of you who spoke today for sharing a piece of our life, your lives with us and having Dr. McCallum be able to give you some guidance on that. Um, Dr. McCallum, we are forever grateful. You're always so generous with your time and graciousness with all you do. And there are no words that we can say that will describe really how much you've done. I want to add that this program would not be possible without evoke pharma. Evoke Pharma is a specialty pharmacy, and they're dedicated to helping patients, and they are the makers of GI Modi, which Dr. McCallum spoke a little bit about today. And um, that's the nasal spray of the Metacopamine. So um we are grateful to Evoke for their generosity in sponsoring these programs. And I always close these programs the same way, but I want to thank you and know that you are my heroes, including Dr. McCallum, but you're all my heroes. And Evoke Pharma is our hero because Dr. McCallum and Evo, they are working to help patients in so many ways. And that to me means so much as a patient myself that there are doctors who are trying to address symptoms, trying to research it, and trying to provide hope for patients. And for you patients, you are my heroes because every day of your life you are going through this. You have to make decisions that impact your life on do I do surgery, do I do this test, do I do this procedure, what do I have? And you live a lot of your life, and if only, what if I do this? What if I can't go? All that makes you the quiet hero. You hear about actors, actresses, sports stars, they're all heroes, but you are the ones who really are the stars. And for all of you, know that you may feel alone, but you're not alone. My heart remains with you every day. My thoughts are with you every single day. In my prayers, whether I've met you or not, I am praying that perhaps you'll have some relief. And perhaps this can be one of your better days. May God bless you all. Thank you so much again, Dr. McCallum.

SPEAKER_01 56:58

Yes, I'll be going to the uh annual GI meeting in May. So our next podcast will be in June, where I'll bring you an update on what's new with GI Maturity based on the presentations at the annual GI meeting.

SPEAKER_00 57:20

Very exciting. Thank you again. Thank you so much. Take care. God bless. Thank you. Thanks, Mangela.

SPEAKER_01 57:30

Bye bye.

unknown 57:31

Bye.