It all started back in January of 2017. I changed my diet a bit, and decided to start eating more salads. On this particular day, within 30 of consuming the food, I was sprinting to the restroom with horrible diarrhea and burning abdominal pain. Thinking it was unrelated to the salad, the same situation played out the next day, and the next. I decided to completely change what I was eating, but the trend continued despite my changes. It escalated to the point where I had intermittent issues with fecal incontinence and alternating constipation. I was mortified. As a 35 year old woman, this was very difficult for me to deal with, and it began to affect my relationships. My primary care provider thought it was mixed type IBS, and started me on Linzess for the constipation, which helped with that, but would exacerbate the diarrhea. I only took it for a short time. I finally had a period of a couple of weeks where it relented for a bit, and I thought maybe I was better. I was wrong. It came back with a vengeance. It came to the point where I was getting on a flight one day to Rome, and I was stuck in the bathroom for an hour at one point with the worst diarrhea ever. It was embarrassing because there is no way I could conceal the sound or smell. It would intermittently relent for short periods of time (days/weeks), but would come right back. By this point, it was August of 2018. I was getting on a flight home one day from another trip abroad, and I had to sprint to the airplane bathroom before takeoff to relieve myself, because my guts were on fire. As we were taxiing down the runway for takeoff, the staff banged on the restroom door demanding I come out. I could not until I was finished, or I would soil myself. I was mortified. I couldn’t be anywhere without a restroom nearby. This was very problematic at work, where sometimes they would all be occupied and I would have to go so badly I would be sweating and shaking. In December of that year, I became unable to tolerate oral intake. It felt like my GI tract was frozen. I vomited relentlessly, and could not tolerate food because it would come back up completely undigested even if I had eaten it 24 hours prior. After a week or so, this improved and I went back to my prior symptoms. I had started having a lot of random fractures over those few years from minimal activity- a single jumping jack fractured my right 5th metatarsal. Walking on cobblestones in hard soled shoes fractured my left 3rd metatarsal. I gave in and went to the gastroenterologist in January 2019, who wanted to do a colonoscopy, but since I was working full time and in grad school as a widowed single parent, I couldn’t find the time. I just pushed through as best I could to finish school. Later that year, I was in an accident that would leave me with 13 fractures and was wheelchair bound for months. When I went home from the hospital, the diarrhea was so bad I decided to wear Depends so I wouldn’t soil myself before I could make it to the toilet. This felt like rock bottom. Little did I know, things would get worse. March of 2020, I was on a road trip with my mother and kids. We were staying on the boardwalk of a nearby beach town, and stopped into a local store for provisions. Unfortunately, Covid had just hit and had sent the locals into a buying frenzy. The store was picked over and bare, with no toilet paper anywhere- a nightmare situation for someone with intractable diarrhea. We only had two rolls to last 4 people 4 days- I would use that much myself, so part of our first day there was scouring the city to find some. We were lucky enough to come across one pack of 4. However, the shortages continued which was nightmarish for months to come. The constant stooling was burning my skin so badly that I would cry and it became difficult to sit for prolonged periods of time, which was impossible for me to avoid given my injuries. As I got back on my feet, the symptoms continued and I was constantly running to the restroom. I would leave work and have to drive right back to a nearby building and race upstairs, praying I could hold it that long. I became fearful of driving for any prolonged periods of time. Eventually, this led to the dissolution of my relationship. I just couldn’t make anyone understand what I was dealing with. I was becoming increasingly depressed and miserable. In late 2021, I was driving to work one day, and while driving had the sudden urge to vomit. I couldn’t make it stop. This continued on almost daily after that. I kept pushing through, because I didn’t have a choice. I decreased my food intake because I couldn’t deal with the vomiting and diarrhea. I began having episodes of chills and sweating after the vomiting, and I was shaking so badly that I could hardly write, or when I did, I couldn’t even read it because it was illegible. I had to alter my work schedule to very part time to finish up school. I managed to graduate. However, my symptoms of vomiting and diarrhea got a million times worse after I developed Covid. I was bedridden for about a month because my fevers would not abate. In March of 2022, I lost my job because I had a skip and fall with a head injury at home, and I had lost my sick days with converting to part time, and they would not convert me back to full time since they knew I was going to be leaving. After this, I continued to deteriorate. I became debilitated and was unable to resume working due to my symptoms. I started having neurological effects in about September of 2022 (dizziness, uncontrollable body movements, insomnia, fatigue, paresthesias). I would go without eating sometimes for about a week, because I could not keep the food down. I had lost about 40 pounds by this point. In early October, this progressed to extreme pain, burning, numbness and tingling along with weakness and shaking that made it incredibly difficult to do anything around the house. I finally gave in and went to the hospital. I was there for 5 days and they ran a battery of tests, which showed I had severe malnutrition and a severe vitamin D deficiency, along with ketosis. I had an upper and lower scope which showed mucosal damage to my esophagus and stomach from all of the vomiting and some scattered ulcers and erosions throughout my intestines and colon, and severe acute colitis of undetermined cause. The vitamin D supplementation helped with the pain, and I was able to take in some fluids, calories and eat a little after my ketosis and dehydration were improved. I went home and continued the medications I was given in the hospital, pantoprazole, vitamin D, gabapentin, and some others. Not long after I was discharged, my neuro symptoms (minus the excruciating shooting and burning pain, although I still had my baseline pain which was already terrible) became even worse and I developed an uncontrollable full body tremor. I reverted back into the intractable vomiting and could not eat for days on end, and had recurring episodes of dehydration. It seriously affected my ability to drive or function because I get so lightheaded. To this day, I don’t have a definitive diagnosis for all of these crazy symptoms. Christmas has just come and gone, and all I can do is pray that as we go into 2023, things will get better. Sorry, I know this was very long, but I hope I can find some answers as soon as possible. This has been my journey with my mystery illness.
About Incontinence
