1...2...3...4....20...30..33+

It was June of 2024, my husband was a manager at Meijer. If you count the time before we moved, and the time he worked there after we moved back, he had been a manager there for 13+ years. I believe it was June 14th, I got admitted into the hospital. I weighed around 90lbs. The plan was to put in a J-tube because we knew from my previous surgeries that the G-tubes don't work for whatever unknown reason to them at this point other than that I cant tolerate feeds in them the same I cant tolerate eating food. I got out of surgery, and they put in a Peg-G. I cried and pled with the doctor that it was the wrong tube, but to no avail. They treated me like I was dumb, told me its the same tube I had a year and a half ago, basically gaslit me into thinking that somehow I didn't know all the horrible experience I had already went through or even what type of feeding tube I had inside of me for 6+ months just a year and a half before. To no surprise I could not tolerate to feed through a G-tube. The surgeon refused to replace the tube telling me that he did everything right and its a perfect tube and he was not taking it out. I fully understood he did the tube correctly or to his perfection, but the tube was the entirely wrong type, as I needed a tube that bypassed my stomach entirely, so now I had a feeding tube that I could not use, and they refused to remove and replace with the correct one. After a week or so in the hospital still receiving no nutrition, and my health and weight declining rapidly, it was finally agreed that they would change it to a Peg-GJ by a different surgical group entirely. I could not feed at a high rate like they wanted, but I was put on 24hr feeds and sent home. The recovery for the surgery is around 4 weeks, and with 3 little ones living with us, plus my husband trying to work, things were quite the challenge. My husband ended up having to get on FMLA because working was impossible, and he had ran out of PTO, as I could not even get from the bed to use the restroom hardly, let alone care for our children. Before I could even fully heal, my J "flipped" out of where its supposed to be in the small intestine, back into the stomach. This would cause me to be unable to feed and very sick. I had to go back to the hospital and have another surgery to correct it. Over that summer I had 15-20 feeding tube surgeries because my J portion of my GJ tube would "flip" back into my stomach. I figured out through research this most likely happened and continued to happen because of my EDS. My body rejects foreign objects, even things such as tattoos and piercings, which explains a lot of issues I had growing up with both of those. Eventually at a point in the summer of 2024, I was laying in the hospital bed at St. Vincent Hospital, and my kids, and my husband were all sitting in my room, and a doctor came in. At this point I was down to 78lbs I physically felt like I was dying. He told us that he didn't know anything else he could do, he had no explanation for any of my symptoms or problems, and that at this point he was simply trying to keep me alive and really had no plan at all. We talked him into releasing me for my husband to drive me to the Cleveland clinic in hopes maybe they would have some sort of answers.

The Cleveland clinic was around a 13 day admission filled with not a lot of answers. Every doctor and specialist wanted to do testing but none of it could be completed while inpatient. I finally got released, with a feeding tube that I could hardly even use, because it caused immense pain whenever I increased the rate. I did get a follow up with a GI doctor out of this admission, and that is when a lot of things started to get discovered. We had to travel back for the appointment, but it was well worth it, for answers that finally provided proof that I did NOT infact have an eating disorder, nor was IBS my GI issue. After some pretty extensive tests and a couple trips to Cleveland, I was diagnosed with SMA syndrome, MALS, and Nutcracker syndrome. These are vascular compression disorders that restrict my GI tract. They are very rare conditions, and finding treatment or care has been more than a challenge. There are procedures out there that are readily available and widely used, that are known to fail. They are not fixes, but short term bandaids that often times offer more problems than solutions long term requiring constant revisions. Next came trying to understand these diagnosis and what they meant for me long term....am I going to see my kids graduate? get married? so many questions and so few positive answers......