Eosinophilic Esophagitis

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I'm new here and looking for new friends my AGE (Male 24) please be 18-29

Looking for new friends IBS, Crohns and Ulcerrative Colitis! i have IBS and EOE and have wonderful friends with crohns and UC. Add my snap tyalbob60 if interested

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Hey y'all!

I'm new, my name is Labradored. I am here because of multiple medical and mental health issues. My oldest daughter was born with Rett Syndrome (a pervasive developmental disability with serious health issues) and died from a seizure in my arms at 12 years old in 1993. My youngest daughter died in a car accident at 17 in 2000. They were my only children. I was so very blessed to be their momma.
My medical issues include long term insulin dependent diabetes II, exocrine pancreatic insufficiency, Celiac disease, asthma, osteoarthritis, severe food, drug and environmental allergies, dysphasia, Barrett's esophagus, eosinophilic esophagitis, GERD, chronic stomach issues, and IBS.
My mental health concerns include Major depressive disorder, generalized anxiety, OCD and ADHD, and complicated grief related PTSD.
The memes on this site are helping me get through this current gastro flare, I've been nauseous all day today with vomiting and diarrhea for the last 12 hours . This happens about twice per month. My food menu is quite limited due to allergies to gluten, soy, most non citrus fruit, lactose intolerance and tree nut and peanuts. I feel like I develop a new food allergy every year.
My medical issues began shortly after my youngest girl died. Don't let anyone tell you that grief is just an emotional response, grief has wrecked serious havoc on my body.
I have a wonderful husband, supportive and loving friends, a great career as a behavioral health counselor and three fur babies who provide unconditional love and entertainment.
Most of the time I manage pretty well, but when my health conditions flare, it tanks my mental health as well.
Looking forward to sharing and receiving. 🩵🩷 Blessings upon you all.

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concussion migraines & pressure

Hello all, hope everyone is doing alright. Ontop of my already chronic health issues ( EOE, GERD, IBS, anemia ), I suffered a pretty bad blow to the back of my head around 2 weeks ago in my ncaa lacrosse game. Have had a lingering migraine with loads of pressure in my head that won't go away. Was told I have a concussion. Any suggestions for migraine and pressure relief ? I eat super healthy and was told to not do much excersise because it will make the pressure worse. I fear I may have post-concussion syndrome developing. I am very behind in school (nursing major) because of this, so any tips for studying with migraines would be helpfull to!

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eoe flare up

Tips on calming an eoe flare up? Been a week long flare up and have found no relief

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Hi!

Hi!! Not new to The Mighty but I am new to this group. My list of illnesses/disorders/whatever you want to call them is very long: bipolar, ADHD, PTSD, anxiety, OCD, Chronic Fatigue Syndrome, POTS, Hashimotos, chronic pain, Eosinophilic Esophagitis, hard-of-hearing, low-vision, migraines… I think there’s more. I can’t even remember all of them! Anyway - a day in my body is a ride to say the least. Just wanted to say hi. I feel and lot of support here that I don’t get in other areas of my life. Some people in my life even saying that either 1) one or more of my disorders don’t exist or 2) that I’m “too high functioning” to have them. This picture was taken on a good day - I had just gotten my eyebrow pierced as well as a matching tattoo with my best friend.

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Mayo Clinic GI, my experience thus far

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.

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Hi! New to the group.

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

4 reactions
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Hi! New to the group.

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

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The decline of my health from 2022-2023 thru my doctors notes. Doctors ruling me off as "rumination", losing hope with doctors listening.

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.