Commonly Asked Questions from the Newly Diagnosed

Last week, I woke up Sunday morning with excruciating pain in my back. After a visit to a doctor on Wednesday, I was informed that I probably just slept on my back funny and re-injured it (I have been a few car accidents) and will  need physical therapy. I'm feeling better, but was so uncomfortable last week I could literally only lie on my side to get some relief. I was prescribed Vicodin, but after being off of narcotics for more than a year and a half, it made me loopy and nauseated. The pain may have been gone, but I felt so sick it was barely worth my two hours of nauseated bliss, especially when it started messing with my colon. I felt gross. I'm mostly back to my normal self, and hopefully I can find a way to get out of physical therapy.

So anyways, sorry I couldn't write last week. I am making it up for you today though, with common questions the newly diagnosed seem to ask, or questions I see a lot that I have some experience in. Hope this helps for those of you who are trying to educate yourselves, either because you have IBD, because someone you love has IBD, or because you're just interested. (Kudos to educating yourself and raising your own awareness, yay!)

1. Will this disease kill me?

This was the first question I asked my doctor when I was diagnosed. Actually, I was so terrified and my daddy knows me so well, that I looked at my father, squeezed his hand and telepathically asked my dad to ask this terrifying question for me. He did, and my doctor responded "well, I can't really say..."

Thanks for making a teenaged girl feel so at ease, doc. 

You probably aren't going to die. Yes, it happens. Sometimes, someone won't get an answer until after they die. Sometimes, people die of complications in surgery. Sometimes, you die of dehydration or malnourishment. You might be prone to c diff, and one day, it claims you. It happens. But you simply can't live your life wallowing in that fear, because you'll miss so much if you do. You're probably more likely to die in old age, in your sleep. Just grab a hold of life and live fearlessly.

Basically what my doc said when I went into ER pre-diagnosis.

2. Can I be cured?

There's no gentle way for me to break this to you. No, you cannot be cured of IBD. Sorry. No amount of vitamins, sunshine, water, medications, exercise,  special dieting, etc. will cure you. You can go into remission, but you are not cured. Any reputable, licensed doctor will tell you that there is no cure. If your doctor tells you to do yoga every morning, eat grapefruit for breakfast and then go climb Mt. Kilimanjaro on a full moon to be cured, run. You might think this is an extreme example, but I see people on CCFA's support pages claiming wacky things all the time, like that people in Florida can't get or rarely get IBD because sunshine cures the disease. Not true. There are people in Florida IBD.

3. I have both ulcerative colitis and Crohn's disease. My doctor said so.

Nope. You, my friend, are misinformed. I know doctors are a little difficult to understand. What your doctor probably meant was that you were originally diagnosed with ulcerative colitis, and then over time, it became apparent that you actually have Crohn's disease. Or, that you have Crohn's colitis. Crohn's and UC are similar diseases, but they are separate, individual diseases.

While both diseases are autoimmune, inflammatory, chronic, and are located in the gut, there are some key differences. Crohn's disease can affect any layer of tissue and any part of the digestive system. Most people who have Crohn's have Crohn's of the ileum. In fact, when Dr. Crohn first discovered the disease, it was called terminal ileitis, because in most cases, it occurred in the terminal ileum.  If you have Crohn's, you may flare in your mouth, esophagus,  stomach, small intestine, large intestine... wherever  as long as it is in your digestive system. People who have Crohn's colitis have Crohn's disease in their colon, and the disease can affect and damage any layer of tissue. This is different than UC, because while UC flares are restricted to the colon, and only the first two layers of tissue are damaged.

Here, have a visual.

I encourage you to read a book about IBD, talk with your doctor, or visit the CCFA page to more fully understand the diseases. I am an informed patient, not a trained specialist.

4.  Is Crohn's disease worse than UC or vice versa?

This is a tricky one, and my answer will probably upset and offend some people. There are two levels to this question: how tough is the disease emotionally, and how tough is it physically. 

On a physical level, I don't really think you can compare the two diseases like this. I have a friend with Crohn's disease who's disease is much nicer and more tame than my UC. She responds well to lighter forms of treatment, like prednisone, whereas I need to stay on Humira, because I begin to flare as soon as I am due for the medication. I have another friend with Crohn's who is decidedly worse off than me. She has had numerous surgeries, and even Humira and azathioprine, medications we both take, do nothing for her. She is struggling, and in pain every day. I am responding well to the same medications her body is not so accepting of.

On an emotional level, everyone deals with grief in different ways. Some people tackle life head on, and come out just fine. Others are crushed when they learn they have a disease like this, and even if their physical symptoms are relatively mild, can spend years hiding their shame and embarrassment. Some people are in between. I have begun to hate this question, because it's turned into "I have a rougher life than you, and therefore your pain is invailid" on support forums. While I think this is a perfectly natural question to ask, I think the follow-up question should be: how do we support each other and love each other? Let's lift each other up rather than compare notes and put down a patient who just got diagnosed with mild UC in the rectum and is in tears, while you have had multiple surgeries and barely made it out alive more than once. It's a horrible thing to have no compassion for your fellow suffering human being. Yes, you have had it rough. But no, that does not give you permission to put down the person who is going through the shock and disbelief of being newly diagnosed with a mild case. Plus, if you want to play Who's Sicker and has it Rougher, I know a girl from El Salvador. She has no colon. Her only form of medication is vitamins. Her mother washes clothes so she can go to school and become a nurse.

I dare you to beat that girl's brave story. 

I plan on doing a part two later this week, to make up for the post I didn't do last week. Keep your eyes peeled!