Eosinophilic Esophagitis

I first came to Mayo Clinic GI department in June of 2022. I came in with a diagnosis of eosinophilic esophagitis and reflux. Immediately I was labeled as 'looking healthy' and was put off as 'rumination.' Rumination is excessive dwelling or thinking of a condition, often times making it worse. As the months. went by, my symptoms would get more and more broad. I went from from only severe vommiting to nausea, joint pain, migraines, food sensitivities, UTI symptoms, worsening constipation, extreme tiredness, and hives. All these symptoms were pushed to the side and the only solution they could offer were multiple, heavy medications. The following year with their care I would undergo countless procedures and surgeries, resulting in a diagnosis of chronic idiopathic constipation and severe gerd w/lots of damage to the esophagus. Once again, I was prescribed on more heavy medications. My symptoms would continue to get worse. As time went on, I started to question the very doctors taking care of me. My symptoms were disregarded, my case was pushed to the side since I 'appeared healthy', and their only solution were prescribing 6 strong medications that would slowly wear away at my body. As I started to research, I came to understand how harmful all these medications were on my 18 year old body. When brought up to doctors, I was told there was nothing else they could do. No herbal remedies or any sort of diet were ever mentioned, which is the root solution to Gerd and eosinophilic esophagitis. My most recent appointment was the worst interaction I've had with a doctor. I once again mentioned the worsening of my health and conditions the past year during this appointment, and the only solution I was offered was more medication. Not only more medication, but the medication I was on for 6 months in the previous year that helped with literally nothing. The biggest issue that is worsening is constipation. I don't have any bowel movements anymore. I have tried fiber supplements, magnesium supplements, over the counter medications, and harsh prescribed medications. I have undergone procedures and surgeries and nothing was found. Nothing works anymore and when mentioned to my doctor yet again, they had no solution. I was offered a, "well what do you want us to do." Guess I just won't have any bowel movements lol. This wasn't even the most frustrating part of the appointment. The most frustrating part was over an accommodations letter for school. I am currently a college student with a major in nursing. It is very hard for me to keep up with all my required coursework when I feel so sick all the time, not to mention all the side effects my medications uphold. I asked for an accommodations letter from that doctor 3 months ago and was finally given one just earlier this week. The only thing addressed in the letter was only 1 of my conditions and they only suggested 'bathroom use.' Keep in mind, I had kindly requested excused abscense if having a flare up and extended time of tests & assignments if needed. When mentioned in our appointment, it was once again pushed to the side. I was told that they felt, "the accomodations were just." Overall, my experience with Mayo Clinic GI has been anything but "the best care in the world." I have now weaned off my meds, and continue to feel sick on a day to day basis. Under mayo clinics care I was put on several harmful medications, most often offered no solutions, and my case was ultimately pushed to the side. I am actively researching my conditions and trying to figure out on my own how to get better. Doctors like Mayo Clinic make me doubt majoring in nursing in hopes of being a DNP in the future. While they make me doubt my major and future occupation, they also confirm my decision. They confirm my decision because I am so excited to one day test, treat, and diagnose patients. Not only that, but I have seen the brokenness of the industry and how doctors only prescribe medication onto of medication, as opposed to just finding the root cause.

Hello, everyone! Thought I’d post and say hey. I live with a few autoimmune disorders. Eosinophilic esophagitis (EOE), Hashimotos, and Postural Orthostatic Tachycardia Syndrome (POTS). I still have a LOT to learn but hopefully I will be able to share some wisdom as well. Looking forward to chatting with some of you and also supporting each other in all the ways. #EoE #HashimotosThyroiditis #POTS

Hello, everyone! Thought I’d post and say hey. I live with a few autoimmune disorders. Eosinophilic esophagitis (EOE), Hashimotos, and Postural Orthostatic Tachycardia Syndrome (POTS). I still have a LOT to learn but hopefully I will be able to share some wisdom as well. Looking forward to chatting with some of you and also supporting each other in all the ways. #EoE #HashimotosThyroiditis #POTS

June 6, 2022. 18yo patient lost a total of 26 lb. Vommiting progressed to 6-7 times per day. She eventually underwent an endoscopy and was told she had reflux and eosinophilic esophagitis. She continues to have vomiting on a fairly regular basis. She also has heartburn. She is constipated. I get a hint of rumination.

August 16,2022. She had several other complaints today. She does feel bloating at times. She has also developed constipation. She has a good bit of difficulty having a bowel movement unless she takes a laxative. She does eosinophilic esophagitis although I am not sure it is producing a lot of symptoms. I still wonder if there might be a degree of rumination here. Constipation predominant IBS: I think she has this. I think she would do well with Linzess so will give that a try.

August 2022 Endoscopy showed (pay attention to this one). Upper endoscopy showed normal esophageal motility. Barium swallow showed some reflux but no stenosis.

June 15,2023. 19 y.o. female who presents to the GI Clinic today for a follow-up appointment regarding dysphagia and constipation. She also had concerns for constipation today. She still has reflux, that seems to be worsening. she would like to identify what the cause of her problem(s). She also noted that she had a bout of constipation alternating w/diarrhea. She also has other symptoms to include the migraines, joint/knee discomfort, and body aches. She is a consideration for rumination.

June 18,2023 Endoscopy results (look at 2022, compared to 2023).

LES/EGJ: low resting pressure

ESOPHAGEAL BODY: very weak. Only a few transmitted contractions

UES: normal pressure and normal relaxation

RESPONSE TO 5 RAPID SWALLOWS: very weak

SUMMARY: Ineffective esophageal motility

Esophageal body: Ineffective swallows, Not all swallows have failed peristalsis

90% of her swallows are ineffective

This study is positive for pathologic acid reflux with positive symptom correlation for cough, heartburn, and regurgitation.

June 3,2023. She presents reporting heartburn and bowel concerns. She continues to have heartburn even while on a regimen pantoprazole, and lots of tums. She also complains of bowel issues as she is not have a bowel movements on a daily basis if she does not take the Linzess.

August 24,2023. Her constipation continues, even when on Linzess and MiraLax. We discussed trying a different treatment since Linzess is not effective, I put her on amitizia.

September 14,2023. Patient advises of not having a BM in 3 weeks, so she tried amitizia and had a severe reaction. She saw an urgent care provider, who recommended she stop the medication, which I agree w/. She was on Linzess for the weeks prior and still didn't have adequate response.

I thought each bite I took would be my last. My whole life I thought I was going to die. Food would get stuck in my throat, choking me, killing me. I'd go to sleep and wake up the next day, still choking from the night before.

The doctors said nothing was wrong; bad posture, bad attitude, stubborn little girl. Discipline was the answer.

It broke me. They broke me. I got diagnosed almost 7 years ago now, and even then by a total fluke. I struggle with the disease and with food every single day. But I don't think every bite and every meal will be my last now.

It's hard to think you've made progress when things are so dark. But hey, at least I'm not scared that each bite of food will be the thing that kills me. I haven't thought that in years. That perspective helps a little. At least I'd like to think it does.

Thought I still can't eat... well let's say that's a long list 😅

#RareDisease #EosinophilicEsophagitis

Hi, my name is M_Jmom. I'm here because my daughter just received a preliminary diagnosis of dysautonomia and my son was diagnosed with eosinophilic esophagitis a year ago.

#MightyTogether