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ANONYMOUS’S PERSONAL STORY

I am a 27-year-old female. My problems began ten years ago. When I was 17, I had a bowel obstruction. This seemed to happen out of nowhere, and I don’t remember having symptoms prior to this. I had no idea what was happening to me, and assumed that my appendix had burst. It was the worst pain I have ever felt. My mother took me to the ER, and I was admitted to the hospital, where I had to undergo emergency surgery. I was very ill, and placed on a lot of pain medication, so a lot of that hospital stay is a blur. I was in the hospital for about one week- I remember the NG tube being one of the worst parts of the whole ordeal! I kept hearing, “We don’t usually see total obstructions in patients your age…” and it was never determined what caused the blockage. I was given all the usual tests for Crohn’s but they were inconclusive. Shortly after healing, I began to have problems with constipation. It was difficult for me to eat regular meals without feeling sick. I had a lot of abdominal pain, sometimes to the point where I had to stay home or miss social events. I would throw up my food. Sometimes it seemed like one meal could immobilize me for three days. I continued to get tests done for almost a year and a half. During this time I took a stool softener which didn’t provide nearly enough relief. Eventually, it was discovered that I had another blockage, probably a stricture due to scar tissue from my previous surgery. I scheduled another resection, to take place just after I graduated high school. The ilocecal resection removed part of my terminal ileum and cecum. After a week in the hospital, I was discharged even though I had a fever. It turned out I had an infection, and was readmitted for another week. It was very painful and scary. At the hospital, they inserted a PICC line and I went home with an antibiotic bag, which I kept for 3 additional weeks. This surgery seemed to help me a lot and I felt much more normal after I was all healed up, though now I would have diarrhea instead of constipation. I would have “Flare ups” where I’d eat and then immediately have to go to the bathroom, and it would seem like my food was not properly digested. I mentioned this to GI specialists but they did not seem concerned about it. This would happen for a week or two at a time, and then I would feel somewhat normal again. But, I never really knew when these flare-ups would occur. I tried a lot of different diets, including gluten-free, but I could never tell if it made a difference. At age 22 I had a massive episode of GI bleeding, also out of nowhere. I was having a normal day, and suddenly lost so much blood that I felt dizzy. I went to the ER and was admitted to the ICU. Again, I kept hearing, “We don’t usually see GI bleeding in a woman your age…” I was given many tests, including a colonoscopy, upper endoscopy, and capsule endoscopy. I was worried I would need to undergo surgery for a third time. Luckily, this did not happen. However, the doctors were confused as to what caused this bleeding episode, and couldn’t find anything in my test results. The closest thing to an “answer” I received was that I may have had ulcers in my small intestine that became irritated. When the bleeding resolved, I was sent home after 6 days, and put on Iron supplements and a proton pump inhibitor. I went a solid five years without any more bleeding, but just over the summer, I had another GI bleed. For a few weeks before this, I was experiencing symptoms of peptic ulcers (burning, gnawing feeling in the stomach). I was admitted to this hospital, this time for only 2 days. Once again, doctors offered no explanation to why the bleeding may have happened. As usual, the GI specialist talked to me for about 2 minutes, asked the same questions as everyone else, and then I never saw him again. Once again, I was placed on Iron and a proton pump inhibitor. So, there’s my story thus far. I have never been diagnosed with anything other than “IBS,” but I feel it must be something more than this because of the obstructions and GI bleeding. I have had every test under the sun, and my results often come back “normal.” This is good, but it’s also frustrating to have no answers. I live in fear that another unexplained medical emergency could happen to me at any time, or that there’s something I should be getting treated that I’m not even aware of… In terms of my daily life, I am prone to diarrhea, particularly right after meals (it really depends on the day). I avoid spicy food, fried food and alcohol, and try to eat small portions. I am lucky in the sense that I can maintain a pretty normal life. After ten years, though, I would really like some answers, and I wonder if I will ever get them. Thank you for reading my story.

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