Eosinophilic esophagitis- allergic inflammatory Disease

UPDATE: 6-11-2025

We finally have a diagnosis to what Traci has and it is a very rare disease. It’s like one percent out of like 999 million. And she’s just lucky enough to get it on top of having the cork screw esophagus that will have to be fixed as well, so we have a little tough road ahead of us. We’re not sure whether the esophagus and the stomach will actually come back to life and be able to work. We have a few tests we have to do to see how she metabolizes the food and see if there is any movement from the esophagus in the stomach. As of now, there is not. They will be trying a couple medicines to try to see if the medicines can help the esophagus heal so it’s able to start up again. The esophagus is in very bad shape. The stomach might start up again too, but they both need to be functioning fully in order for me to move forward. If we’re successful, can get it functioning with medicine everything will go back to normal except I will have to have a revision done of bariatric surgery, which would be a gastric bariatric bypass. Basically that is rerouting to the intestines, and not using the stomach to digest the food. That would also be somewhat of a special diet that I would be on as well. Either way this goes the esophagus has to be fixed. It is not pliable. It is cork screwed, and it will continue to have debris and impaction happening where things are getting trapped within the esophagus and not passing through anywhere. This causes a lot of issues and it has to be resolved by having an endoscopy and have them suck everything out of the stomach and the esophagus. It’s a horrible feeling you feel like you’re drowning. It sucks being on a strict liquid diet, but it’s better than the alternative. The good thing is we did finally get pathology results today and there is no cancer. We are so very thankful and we thank God for listening to our prayers. We’re not out of the woods yet we still have a very long road ahead of us. There is a very, almost certain possibility that I will be taking fluids for the rest of my life. If we get to that point where the medicine does not work and they cannot get it to metabolize into function at that point I will have a picc line where I will get my nutrients through for the rest of my life. And I know this sounds scary, but this one really doesn’t even make me scared. I’ve been around and individual who I love have cared for and she has had a feeding tube as well as a belly tube for her fluids and her nutrients and I have handled taking care of her. I believe she was placed in my life for a reason because I needed to learn so that when I became in the same situation, I would know how to care for myself properly to avoid infection and to be able to obtain the nourishment and hydration that I need. Life will never be the same for sure. And you do go through a grieving stage. I don’t think people realize how much of a part food is in people’s lives. It brings people together, people socialize, people, gather and you just wrap yourself up in the wonderful flavors and comfort of food. So when you’re not able to have it, it is a little bit of a challenge mentally. Today I was craving pizza which is one of my favorite foods. So, there’s a lot of mental challenges that you deal with when it comes to food, especially when your partner can eat food and you’re literally living off four items that are liquid. Now I’m not saying I’m disgusted or choking them down, they’re not bad to eat they taste just fine, but you can only live off applesauce, juices, chicken, broth, beef, broth, Jell-O for so long before you’re tired of even opening your mouth to shovel it in. Again, it is a mental challenge more than anything else. But I just look and try to stay focused reminding myself, that I’m fueling my body. My goal is to make sure every single day I meet my 1250 cal. And these calories are just enough for me to obtain life and keep my organs functioning. It is almost impossible for me to get any more than that in and some days I fail, some days I get busy and I forget to eat. Unfortunately, I don’t have that little voice or that little feeling in my stomach that tells me I’m hungry. My stomach is dead. It’s not telling my brain to do anything so I never am hungry. So you have to continuously stop every 5 to 10 minutes and eat or drink something to get to those calories. It is a challenge I get up at like 4 o’clock in the morning every morning and it takes me until 10 o’clock at night to achieve these calories. But I have to make these goals. Otherwise it will affect my organs. OK, so moving ahead we’re trying to stay positive. We still have a lot of expenses that will be coming in and we do appreciate everybody’s generosity with blessing of gifts of money. Just coming to sit and visit with me brightening my spirits, The text messages and cards. The gifts. Dropping off meals for Mark and blessing me with Jello. My community and friends are Top Notch. You are all appreciated. I do have an Amazon wish list if you would like to purchase something to help our family out and of course we have our GoFundMe here to help with medical expenses, toiletry needs for Traci and gas money for back-and-forth to all these appointments. Not to mention we have accumulated a good amount of debt between hospital stays ambulance rides test scans bloodwork and we have much more to come. We appreciate and thank each and everyone of you and wanna express our love and gratitude. Thank you for helping our family out. We thank you from the bottom of our heart. Much love to you all.. We will keep you periodically updated as we know more. Please be patient as Traci is the most of the time because she uses Oliver fuel just existing. She suffers from brain fog and memory loss. This is due to dehydration that she will deal with throughout her life and the lack of nourishment when she doesn’t make her calorie intake. Today was a hard day for her, and she had a lot to do. But I’m very proud of her. She was able to continue to set up appointments to get her health under control. She will be getting everything done that she has been putting off. And I have been informed when she’s finished it’s my turn. I will be seeing a cardiologist and apparently this is nonnegotiable she says. It’s OK I love her so I’ll do what she tells me because I like to keep her happy. Anyways, thank you so much for all that you have done for our family. We cannot begin to thank you for your generosity.

traci‘s disease and the picture of her corkscrew esophagus that has to be repaired in order for her to have the nutrients going where they need to go. There will be rerouting to get to this point where the medicine does not work.

Eosinophilic esophagitis is an allergic inflammatory condition of the esophagus that involves eosinophils, a type of white blood cell. In healthy individuals, the esophagus is typically devoid of eosinophils. In EoE, eosinophils migrate to the esophagus in large numbers.

Hi, my name is Traci Conway. I am 51 years old.

unfortunately, I have been diagnosed with Eosinophilic esophagitis- allergic inflammatory Disease. Plus, I am also dealing with a tear from the buttock to the hip joint. I suffered an internal injury while in the hospital. Due to this injury, I will need to be using a walker for the next six months. I have to have PT come to the house once a day to help me with strength training. My medical state is not good. I will be on liquid diet for the rest of my life. And unfortunately, with that comes bathroom issues. To keep this discreet that would be going to the bathroom number two. Unfortunately I have no control over my bowels, so I am forced to use incontinent briefs. This has been a very humbling challenge for me.

I am asking for help for expenses for my on going medical need. I’m still not able to get around very well by myself and have to have spotters quite often. I hate asking for help. I literally would go without before I would ask for help. But I find myself in a financial situation where I can no longer obtain the things that I need. I have called agency after agency to get most of the medical equipment that was needed. There are so many medical supplies, equipment and peri care items that I will need. These items that have been mentioned will be necessary for me to have on for my daily needs. My life will never be normal again. Now we are dealing with the whole medical team. We have taken a serious financial hit due to my health. Lengthy time in the hospital. Transportation back-and-forth to the hospital daily. Gas money for all of the transporting back-and- forth upcoming appointments, copayment. Several needed procedures that will still need to be performed and are expensive as well my on going prescription's. I hate asking for help. But everybody is kind of pressuring me into setting this up for financial help while we maneuver through the health system and get me the medical help and supplies needed so I can be in as independent as humanly possible. I will be living with this chronic illness for the rest of my life. I will have to depend on people to take me to appointments, and procedures, labs, physical therapy, rehabilitation therapy, unfortunately, we only have one car, and that car is needed for Mark to get back-and-forth to work so we have income. I am fortunate enough to have at least three people in my community that I could ask for help driving me to and from appointments, take me to procedures, picking up medication, taking me to therapy and so on. This money would also be used to help pay for babysitters to sit with me while I’m alone. Gas money for people transporting me to and from. An occasional money as a thank you for picking up groceries and bringing them to my home. I have a lot to maneuver around and set up so that I can have the best and very safe care that I can get. I have a very long road ahead of me. And it won’t be a normal road. It’ll be a challenging road that will be never ending until the end stages of life. If you could find it in your heart to help our family out, I would appreciate it. As I said, we are a one income family and right now financially we are struggling. We haven’t even begun to start with the medical bills that will be coming in and they’ll be a substantial amount of them. Thank you to everyone that has reached out to me and helped me in some way shape or form. Please consider donating if you can. So, I can have a better quality of life. I’m very appreciative. My husband and I are going through some very serious mental issues that are accompanied with a lifetime health condition. So we will also have several copayments for a psychiatrist appointments for him and I as well as therapy appointments for him and I. So I ask if you could find it in your heart to donate anything you could afford. I’d appreciate it. Thank you from the bottom of our hearts. We will update when we know more as we are waiting on results and many test still needed ordered. Our family thanks you from the bottom of our heart ❤️

Traci Conway