My Story: Diagnosis

This is the story of how I found out that I had Ulcerative Colitis. An estimated 1.4 million people in the United States alone share a similar story. So why haven’t more people heard of Inflammatory Bowel Disease? Well, it’s not always easy to talk about problems that are so closely tied to the toilet. It can be an awkward topic to broach. However, I believe it’s important to share your experiences with others. People don’t always realize how much we UC-ers deal with, and spreading awareness about it is the first step towards finding a cure!

Ulcerative Colitis can be tricky to diagnose, especially at its onset when symptoms can be pretty mild. Like others who suffer from IBD, it was only after a multitude doctors’ appointments and misdiagnoses that I finally figured out that I had UC. Unfortunately, things went extremely downhill and I missed nearly half of my freshman year of college before I finally got the right diagnosis! I can only imagine the pain that I could have saved myself from experiencing had I known what I know now about Ulcerative Colitis. I hope that my story is helpful to people with UC or others who may be experiencing similar symptoms.

How it all began…

It all started the summer before my freshman year of college. I had just returned to the U.S. from a 6-week study abroad program in Mexico. One week later, symptoms emerged. Blood mixed with mucus was suddenly appearing in what were otherwise completely normal, solid stools. The mucus looked like whitish clumps that were kind of mixed/tinged with pinkish red. This definitely freaked me out a bit, but I brushed it off as just my system “re-regulating” after returning from Mexico. I ignored the symptoms at first, hoping everything would resolve on its own. Not to mention, these kinds of symptoms can be uncomfortable to talk about. Well, I want to tell you that this is NOT something anyone should feel embarrassed to talk about. It is a legitimate medical concern. Whatever the cause of the blood in your stool, the presence of blood is NEVER normal. It should not be there. Go to a doctor as soon as you see blood, whatever the reason.

Of course, the symptoms persisted. When I realized that it was not going to just go away on its own, I went to the infirmary on campus. They took a blood sample, which only revealed slight anemia. They suspected an anal fissure or hemorrhoids, but found none. I was referred to a Gastroenterologist.

I explained my symptoms—just the mucus and the blood in the stool, which was otherwise entirely ordinary. I also felt perfectly fine. I had no trouble going to classes or doing anything. I wasn’t experiencing any pain; the blood was just there. The GI thought that I looked “too healthy” for it to be IBD, and he suggested I get a sigmoidoscopy (a partial colonoscopy). My parents and I thought that this was pretty drastic and decided against it. Furthermore, I had become convinced that I had picked up a parasite while in Mexico. My symptoms presented themselves exactly as they would with an Entamoeba histolytica infection—otherwise known as amoebiasis.

Parasite?

Over winter break, I saw an infectious disease specialist who also thought that amoebiasis was the most likely culprit. He ordered stool samples to test for a multitude of parasites, including amoebiasis. All the tests came back negative. However, amoebiasis is often difficult to detect, and false negatives are not uncommon. In fact, I was told that it is often treated on clinical presentation alone in other countries. He prescribed me the medications for it (Tindamax and Paromomycin), and I began taking them shortly after returning to school.

After beginning the anti-parasitic medication, things began to get worse. I began experiencing diarrhea and increased urgency and frequency. These types of medications wipe out not just the parasites, but a lot of good bacteria as well. This bacterial imbalance likely aggravated the UC. I began to have discomfort and cramping every time I had the urge to use the bathroom. Within a few days, I was not able to leave my dorm room, and I found myself rushing to the bathroom frequently. I came down with a persistent fever, which I took Tylenol for. I felt awful, and I had my mom pick me up and drive me home. We went to the infectious disease specialist, who could see that I was noticeably more sickly looking. He had me send in another stool sample, which came back positive for the presence of the H. Pylori bacterium, which have been implicated in the cause of stomach ulcers. The specialist thought that perhaps the H. Pylori was complicating things, or that perhaps that was the cause of the symptoms all along. I was prescribed three different antibiotics in order to eliminate the H. Pylori.

More Antibiotics Troubles…

Whether or not the presence of this bacterium was causing me any problems, the antibiotic regimen certainly did. My health declined rapidly. I spent two weeks lying on the couch, only getting up to run to the bathroom or to go to my bed for the night. I had no energy to do anything and was in a huge amount of discomfort. I had no appetite, either. Everything I tried to eat would go right through me and I was losing weight. Bowel movements had become increasingly bloody and painful. I had intestinal cramps that were so severe and agonizing that it made me nauseated. My temperature would also spike to a fever right before a bowel movement. It would usually go down afterward, but the pain itself was exhausting. I was using the bathroom at least twenty times a day, at that point. It was miserable, and the whole two weeks blur together in my memory. I should have gone to the ER much sooner, as they were easily the worst two weeks of my entire life.

When I finally went to the hospital, I was severely dehydrated and malnourished. They inserted an IV and a PICC Line. I was put on Total Parenteral Nutrition (TPN) and ended up having two blood transfusions. A colonoscopy was performed, and I was finally diagnosed with Ulcerative Colitis. The inflammation was throughout my entire colon (pancolitis), and it was very severe. Atypically for UC, the rectum was not the most severely affected, although it was still inflamed. I was put on IV steroids, which worked to bring down the inflammation and allow the colon to heal. I began to slowly feel better, and symptoms gradually improved over my nine days spent in the hospital.

There were some complications, however, due to the malnutrition. The lack of protein my body caused a phenomenon called edema, or fluid retention, after I was put on the IV. So on top of the UC and my physical weakness, my arms and legs swelled up like balloons. This made them heavier and made it more awkward and uncomfortable to get out of bed. It was an odd sight, but at least I was finally getting better. I transitioned from TPN to clear liquids, and finally to solid foods again (hallelujah!).

Recovery

When I was discharged from the hospital, I was kept on Prednisone and my symptoms improved fairly quickly. I hit a bit of a speed-bump when I contracted a C. Difficile infection that landed me back in the hospital for four more days. After it was treated and cleared up, I was on the road to remission. It was a slow, but steady recovery. I had to gain back all the weight that I had lost (nearly 20 lbs), as well as get back in shape and rebuild my muscles. I started on Lialda as a long-term medication and tapered off of the Prednisone. I was in full remission for a year. I did not have any problems and was able to work back to eating pretty much anything I wanted. I still avoid spicy foods and excessively greasy foods, but I think my health is all the better for it.

I sometimes wonder if they would have been able to diagnose me with UC back then if I had agreed to do the sigmoidoscopy early on. If I had to make that choice again, I would choose to go through with the procedure. My advice to anyone debating having a colonoscopy or sigmoidoscopy is that they should go ahead and do it. It might have saved me a whole lot of pain.

Another thing I’ve learned from my experience is to go to the hospital EARLY. Don’t let things get worse! The dehydration and malnutrition not only made me feel worse, but it interferes with the body’s ability to recover from the UC! You should go to the ER sooner rather than later. I regret not going sooner and I can’t emphasize this enough.

For any other UC-ers out there—did you have a similar experience in getting diagnosed? How long did it take you to get the right diagnosis? I’d love to hear from people about their experiences. Did anyone else’s symptoms begin after traveling to another country? I know a couple of other people for whom that is the case, so I’m curious if there’s anyone else out there with a similar story!

Please feel free to comment or contact me via email at thecomplicatedcolon@gmail.com!

Until next time,

Hannah