Hello!


My name is Sarah! I live with my single mom and two sisters. I suffer from multiple conditions including Behcet’s disease, severe Raynaud’s disease, and Ehlers-Danlos Syndrome (EDS). One of the most crippling illnesses I struggle with is a severe motility disorder that my doctors think likely stems from EDS.

EDS is a disease in which the connective tissues of the body are weak and fragile. Because connective tissue is in every body part, the whole body can see a variety of symptoms ranging in severity depending on the type and person affected. I have hyper-mobility type EDS; in this type, it can be as mild as having extra stretchy skin and flexibility to as extreme as suffering with prolapsed organs, frequent full and partial dislocated joints, and clotting issues – among other symptoms. My experience of EDS has included frequent and easy full and partial dislocations of the joints, prolapse of my heart, small and large intestines, uterus, and bladder, easy bruising and difficulty clotting, fragile skin, constant joint and muscle pain, POTS, constant fatigue and weakness, difficulty sleeping, and the severe motility disorder, among other symptoms.

It wasn’t until I was 18 that I got diagnosed with everything and I had major reconstructive surgery to repair my abdominal organ prolapses. Before the surgery, I was completely debilitated and every night I wasn’t sure if I would live through it to see another day. The surgery was successful – it saved my life and relieved an enormous amount of pain!! For the first time ever I was able to leave my room whenever I wanted and hang out with friends and family without pain or being scared of the debilitation my condition caused. I swiftly learned to drive and got my license, and I was able to catch up to my peers and graduate from high school in just a few months! I started college, and was a high honors student! It was the first time in my life I was able to live, and I started to believe I would have a future.

However, while the surgery repaired my prolapses, it did not repair my difficulty passing stool and it soon emerged I have a debilitating motility disorder. My doctors thought I may have a motility disorder before its severity became clear and put me on a regiment of oral laxatives right after my surgery to try to treat it and prevent another prolapse as spending an extended length of time on the toilet is dangerous for me because my tissues are so weak. At first they worked well enough and while I had to spend more than the safe 10 minutes my doctors told me to never exceed on the toilet, I was able to pass stool relatively quickly with little pain and start living life. As time went on, the laxatives slowly started becoming less and less effective and I kept having to up the dosage. This was a risk I was warned about after the surgery, but as there was no other alternative at the time, I had to take it. I suppose some naive part of me hoped it wouldn’t become a problem. It soon got to the point where I was taking the maximum safe dosage of the oral laxative and was heavily reliant on a strong laxative suppository yet my body was largely unresponsive, which is where I am now.

This motility disorder causes me to have severe discomfort and nausea every time I try to eat or drink anything, bad bloating due to slow and inefficient transit through my intestines, and pain bad enough I cry almost daily because digestion and passing stool is so difficult. I am unable to eat very much and am on an almost complete liquid diet, eating once or twice a day, because keeping anything down, or passing it if I do manage to keep it down, is so hard. I am weak and exhausted and my hair has started falling out again because of malnutrition.

Using the toilet is difficult because only some parts of my guts move like they should, and nothing is in sync. Often, one part of my gut will move while another will remain completely stagnant. Thus I often have to meet it where it stops moving and create the movement myself where it is needed by pushing hard on my stomach. This is relatively effective but it hurts badly and isn’t a safe method because my body is so fragile, but it’s the only way I can pass stool. Each bathroom trip takes a very long time because of the extremely slow and inefficient movement of my intestines. I spend hours every day in the bathroom in pain and boredom, isolated from my family and friends and unable to do anything but listen to informational YouTube videos and music. What’s worse, my bowel movements are very unpredictable and interrupt my time outside of the bathroom. I need to be near a toilet at all times because should my guts start moving, I need to go while I still can – and I never fully empty, so I have to keep going back. My sleep is constantly interrupted by pain or toilet trips.

Because of the debilitating pain of my condition and the time it steals from me, as well as how unpredictable bowel movements are, I am unable to schedule anything or keep appointments reliably. I keep missing out on family events – I spent the second half of my sister’s birthday outing crying while in the public bathroom and missed out entirely on my mother’s birthday event. I barely leave our place anymore because of the pain and unpredictability of my condition, and when I do leave I am distracted and stressed over my guts. I don’t have much time after taking care of my most basic living needs to do anything else, from social to career advancement. Every day is running on a pain treadmill, only to wake up and do it all again the next day. I don’t feel like I have a future anymore, and I feel cheated on top of my fear because I actually had a taste of what it could be for a brief time after my surgery.

I have tried multiple different diets and different kinds of stimulant laxatives to try to treat this condition but nothing works anymore. I need to go back to my specialists at the Mayo Clinic as soon as possible for a solution, which my doctors believe they have. My doctors have told me that because my body is so fragile, even just sitting on the toilet for long periods of time is unsafe and could undo the prolapse repair surgery, threatening my life and causing unbearable pain. I think the prolapse has already started to reoccur, and I am terrified. Right now I’m in a lot of pain and I want to spend the time I am stuck in the bathroom doing things I love like writing, making art and music, tending my plants, learning graphic design and working towards my career goals, working with horses, and spending time with my family. I desperately want to be able to have the freedom and dignity this disability has stolen from me. I want to live. I want a future. I need your help to achieve this.

Here is what I hope the upcoming medical trip will accomplish as well as a breakdown of expenses:

I am expecting to get an ostomy surgery to bypass the malfunctioning section of my digestive tract. This will eliminate my need to rely on laxatives and vastly reduce the time spent in the bathroom to a normal amount as I will no longer need to make frequent lengthy trips back. This will also help avoid future prolapse as I will 1. no longer have the gut there to prolapse and 2. the reduced toilet time and prevention of straining will greatly reduce the risk for uterine and bladder prolapse. Because my body will no longer think I have a blockage due to the inactive section of my gut, a condition called pseudo obstruction, I will also be able to eat again and gain back a healthy weight and grow out my hair again. I have wonderful hopes for this surgery, as I believe it will literally save my life and give me a chance at a more normal life. My case is not hopeless - there absolutely is a solution!!

I need your help to afford the rental car and housing for it - it will likely be a lengthy stay, as it was for my last surgery. Right now, I must pay the bills left over from the last Mayo Clinic trip before I can even make the appointments I need (the billing department overrides the medical side if there are outstanding bills). These are bills which are left over after my health insurance paid out. Then I need funds for the trip I have to make to cover costs such as housing, transportation, and whatever else comes my way while I am in the hospital. We need a rental car for this trip because the vehicle we own gets terrible gas mileage, is very old, and keeps breaking down. The medical bills are $14,000. The rental vehicle will cost $800 a month, and housing will cost $3,500 per month. I am planning for worst case scenario for this upcoming surgery which is how long I stayed for my last one: 6 months. This is $39,800. I have also had to factor in the fees Gofundme takes out of each donation. I hope this is clear!

I’m scared, but I need to do this if I am to have a chance at a life that’s as pain-free as possible. I really want to live – I want to get well, and I want to have a hope and a future! I absolutely know I can if I can raise the money to go back to the Mayo Clinic!!

I am confident that my doctors can help me! Please help me – spreading the word and sharing this fundraiser helps a huge amount even if you cannot donate yourself!! Prayers are much needed as well!! I will keep everyone updated as we go along.

Thank you for taking the time to read this!! I appreciate any and all help you guys will give!!

Sarah