Eosinophilic Esophagitis

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.

The past 2 1/2 years I've been diagnosed with several conditions. EOE was my first diagnosis. EOE turned into a severe GERD diagnosis. And the GERD diagnosis, turned into a pretty bad case of IBS-C. Mentions of chronic migraine disorder, sleep apnea, anemia, and fibromyalgia have been my doctors most recent suggestions but not diagnosed yet. Obviously with 3 different diagnosis's, I have a wide range of symptoms. The most common symptoms of these diagnosis's are food sensitivity's, esophageal inflammation, dysphagia, acid reflux, nausea, and constipation. While I do have these symptoms, I do have a wide range on symptoms that my doctors can't explain and or they don't really relate to my diagnosed conditions. These new/unrelated symptoms have gotten worse and worse over time, and I feel as though that my health is deteriorating significantly and no doctor seems to really care. When I mention it, I normally get a , "well what do you want me to do?" As if I was the doctor. Some of my more prominent unrelated symptoms are flare ups of UTI like symptoms, severe pain if passing any bowel movement, sudden feeling of faint/about to pass out, blood in the stool, migraines/headahcs nearly everyday, flare ups of overall painful joint pain/aches, significant brain fog, and numbness/tingling in the limbs. These symptoms started about a year ago and continue to get worse with time. I have kinda given up on doctors helping me deal with these symptoms, so I try and just deal with them. I take over the counter UTI pain medicine for those everyday flare ups, cupping/gua-sha for the significant joint pain/aches, and use a migraine cap/tylenol when a migraine hits. While these things help it a little, it is begining to become unbearable and I feel as though that my health deteriorates day by day. I have a STRONG feeling that there Is an underlying condition going on. Crohn's disease, or Vagus nerve disorder are the most recent conditions I've been researching as potential conditions. If anyone has any suggestions, please let me know. On another note, I also believe there is something underlying with my IBS-C diagnosis. You see, the constipation started around 2-3 years ago. It has not gotten any better, in fact it's significantly worse. I have a complete inability to pass bowel movements on my own. I can feel that I need to, but literally physically can't. I havn't been able to the past several years. Laxtives don't work. Over the counter laxative like medications don't work. I was put on Linzess for around 6 months. This helped very lightly but eventually stopped working. I was then given a huge colon cleanse jug. I drank it all over the course of the day, and passed a small amount of stool but still wasn't cleared out. I was given a second huge colon cleanse jug, and still small amounts of stool passed, but still backed up. I was then put on linzess twice a day, with miralax 3 times daily. Linzess and Miralax combined, and no bowel moments. I was put on yet another IBS-C medication called lubiprostone, and after taking this I had a rather rare side affect and basically went into anaphylactic shock, sending me to the ER. Meaning, still no bowel movements. The thing that concerns me with the IBS-C is what is causing this ? I don't know if my intestines are like paralyzed for some reason in an area or what, but let me know if anyone has any suggestions for what this could be.

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

WARNING: This post is not short!!

So I finally had my intake appointment with a therapist that was recommended to me for help dealing with all the difficulties in my life. I have never went to a therapist before, but am very familiar with the way things are typically done since both my daughters have been seeing therapists for pretty much their whole lives. I wasn’t sure what to expect, but was hoping for the best because I really need someone that will provide me with support. However, by the time I left (two hours after arriving) I felt like I was in some type of shock. I drove to an area trail that I pass to get home and pulled into a parking space. Then I got out and started aimlessly walking down the trail trying to somehow process the things the therapist had said in an attempt to decide if it was logical and right or if it was not. After I was asked many questions about myself, my kids, my soon to be ex-husband and provided a bunch of life history and background info and part of mine and my kids health problems history (yet still only covering a portion of all that stuff that I am sure is relevant), she asked me how on earth with all that I have been impacted by and affected by have I managed to stay afloat and keep functioning. She then started telling me that it is very important at this time that I have a willingness to push my kids to the background and focus on myself. She said that if I don’t I won’t be alive for long to be here for my kids. She told me that she would recommend that I force my daughters to start becoming more independent and focus on myself and my youngest son who is only 13. She suggested me to see about a group home for my 19 year old (even though she is very high functioning and currently works at the same place I do and helps me to pay our apartments bills) or to have both of them move out and be roommates somewhere else. To give a bit of insight, my daughters are 18 & 19. My 19 year old has Aspergers, BPD, ADD, PTSD, OCD, depression, anxiety, and a host of physical health problems that include AMPS, Ehlers Danlos, EoE, food allergies, thyroid problems with a possible tumor on her pituitary, and vitamin deficiencies. She also can’t drive (from PTSD from a car wreck). My 18 year old has recently tried to commit suicide and spent a week in a mental health hospital because of severe recurrent major depressive disorder and anxiety caused from her being sexually assaulted twice in the past year and an array of chronic health issues that include CFS, Dysautonomia, EoE, malnutrition and disordered eating. She also can’t drive yet because due to her frequently passing out from her Dysautonomia her doctors won’t allow her to learn even though she already passed the test to get her permit. I was also told that since my stepson is technically my husband’s responsibility since he has full custody, that I shouldn’t continue to worry about him and just let dad handle everything for him. My stepson has been in my life since he was eight months old (now 17) and his biological mom has never been able to play much of a role in his life because of her severe mental health issues, so I am the only mom he has and knows. The therapist did have some good information about resources that may actually be helpful to me and my daughters, but I’m feeling uneasy about moving forward with her. I know my girls are old enough to be stepping out on their own, but they do not seem to me to be ready yet to take that kind of plunge with all their health difficulties. They lack knowledge of how to survive on their own and they lack in maturity also. Due to all the health issues they have never gotten to act or experience things like other healthy kids and teenagers have. What should I think about all this? Is the therapist giving good advice and I just don’t want to hear it, or is it bad advice and I should not go back? Any thoughts on this would be appreciated.
Sorry the post was so long, but thanks for reading if you made it this far!! #Fibromyalgia #MyalgicEncephalomyelitis #Dysautonomia #EosinophilicEsophagitis #BorderlinePersonalityDisorder #HypothyroidismUnderactiveThyroidDisease #Migraine #Aspergers #amps #Abuse

What can I do about a verbally and emotionally abusive 19 year old daughter with autism, BPD, ADD, PTSD, depression and anxiety? I have two other children in my home besides her and they both have health issues too. One is disabled. I struggle with multiple chronic illnesses and I am going through a divorce from a narcissistic husband. I also do online college classes and work full time at a retail store. My daughter works there also. Most of the time when she goes through her “episodes” with her moods and emotions we will end up arguing, as the years have passed and she has gotten older her words and responses have become more illogical and mean during those fights and no amount of attempts at reasoning with her ever calms her. It has now reached a point where she started yelling and cussing me at work where both customers and coworkers could hear and see. The coworkers were shocked by it. They had never seen her be anything but bubbly and kind. I was stuck having to explain to one of them why she behaved that way after she stormed off. Not only was it really embarrassing and made me feel belittled by her hurtful words, it worried me that we would get in trouble or fired if one of the coworkers decided to report it to our supervisor. If anyone has any advice that could help me to cope with the ups and downs that come with these conditions, it would be really appreciated! #BorderlinePersonalityDisorder # #Autism #ADD #PTSD #Depression #Anxiety #EhlersDanlosSyndrome #Fibromyalgia #EosinophilicEsophagitis #Abuse #MentalHealth #howtocope #ChronicPain #Migraine

Do any of my fellow EoE people have a continual scratchy, dry throat? This is a daily thing for me, some days more than others.
#RareDisease