Posted by: joshpothen | May 22, 2012

When You Have Ulcerative Colitis

It is believed that President Kennedy had ulcerative colitis.

Note: I have not updated this blog in the past semester due to multiple bouts with ulcerative colitis. During the past few months, I wrote this post to help people understand what I go through. Some of my friends have already commented that this entry is both beautiful and disgusting. It must be if I’m to be honest.

When you’re diagnosed with ulcerative colitis, you will quickly become an expert on the disease. If you’re a medical student, you have an advantage because you already learned about it. You know it’s an autoimmune disease: your body’s immune system is attacking the inner two layers of your colon, starting at the rectum and then moving up through the rest of it. That’s why all the treatments are all designed to weaken your immune system just enough to control inflammation in your colon.

But why didn’t you get the disease before you were 24 years old? Why does it start at your rectum and spread upwards? Why doesn’t it affect all four layers? No one knows. But you keep up to date with the latest studies and findings. And maybe one day as a doctor you’ll figure it out.

You’ll need expensive amounts of medication. Your student insurance will only cover so much, leaving you to pay several hundreds of dollars each month. You’ll look at other health insurance options, but they’ll all be too expensive and offer little extra benefit. Thankfully, your parents graciously agree to cover half of the costs while you’re in school. You’re blessed. You wonder how other people do it.

When your friends and relatives learn you have ulcerative colitis, they will immediately give you advice about what you need to eat, do, etc. 99.9% of it will be bogus, like a plumber telling an astronaut how to operate a shuttle. Your religious friends who automatically favor homeopathic, holistic treatments over Western medicine without thinking will be the worst. They’ll insist you try all sorts of remedies, from probiotics to special diets to Eastern medications. They don’t understand their solutions are useless, as none of them deal with the underlying nature of your disease. Sometimes, they’re even harmful. You may try one or two of them and end up worse than before.

So when you get yet another piece of advice, you’ll nod politely, only correcting people when it’s appropriate or necessary (like when it’s your closest friends and immediate relatives.) You will still love them all, but you will encounter another type of friend. They’re humble enough to know they can’t fully understand your disease. They will ask lots of questions, but offer no solutions. They will simply support and pray for you. You will treasure them the most, for these are your real friends.

You and your doctor will inevitably disagree as to how to treat your disease. But you must remember the decision is ultimately yours. And if you have a GI relative who specializes in your disease and assures you that your case is controllable via different treatment options, you have all the more reason to hold your ground. Because while you can cure ulcerative colitis through a surgical colectomy, you don’t want to wear a colostomy bag for the rest of your life. You must make sure your treatment options won’t lead you there too quickly, or at all.

When you’re healthy, you can eat anything you want. Anything. But you’ll eat a healthy diet with lots of fiber. You’re blessed. Others with your disease can’t eat certain foods because they trigger flare-ups—periods where the immune system goes into overdrive in the colon.

As your doctor and you experiment with maintenance medications that will prevent these, it’s inevitable you’ll have some flare-ups along the way. When you do, it will be awful. Naturally you will have bloody, watery diarrhea, and you’ll go to the bathroom several times a day. (Each time, you’ll scrub the toilet bowl within an inch of its life out of self-consciousness.)

But you’ll also have many seemingly unrelated symptoms. Headaches. Fevers. Aches and pains anywhere from your lower spine to a small spot on your arm. Night sweats where you soak your sheets every night. (This is when you’re especially grateful you’re single and sleep alone.)

You’ll become dumber when you’re sick. You didn’t know that was possible, but you’ll catch yourself making numerous mental mistakes you know wouldn’t normally make. You’ll become extremely sensitive to temperature. Even standing out in the wind for a few minutes can be hazardous to your health. You’ll lose lots of energy. Sometimes you won’t be able to walk your normal route without having to rest several times along the way. Push yourself too much and you might collapse.

You spend the mornings resting in bed, gathering just enough strength to get to work. When you come home, you’ll sit on your bed recovering the energy you lost. Naturally you’ll have to drop contact with the outside world as much as possible during this time. You’re grateful to have family and friends who understand.

You’ll need to adopt a different diet when you have a flare-up. Low-fat, low-fiber. (Fiber makes you move your bowels more often, which is exactly what you don’t want right now.) This means you’ll have to avoid many healthy foods, particularly raw vegetables, and eat lean meats instead. This will seem odd to your health-conscious friends, some of whom may judge you. They don’t know you long for the day you can eat a salad again. You’ll also have to avoid foods that make you even a tad gassy, like broccoli. And for reasons you don’t understand but know from experience, you’ll have to avoid alcohol and caffeine.

As you get better, your symptoms will slowly vanish. You’ll treasure the days you are completely healthy. You’ll have learned more about yourself and the people around you. And you’ll never be more grateful to see solid feces in the toilet bowl.

***

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Responses

  1. [...] Here’s the link. Like this:LikeBe the first to like this post. Tags Meager Med Student, medicine, ulcerative colitis Categories Uncategorized [...]

  2. […] 2010 I was diagnosed with ulcerative colitis, an autoimmune disease where my immune system attacks my large intestine, leading to rectal […]


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