When IBD Makes You Question Your Sanity
If you’ve lived with inflammatory bowel disease (IBD) for any length of time, you know all too well how serious it can get. It’s rare, but people have actually died from Crohn’s and UC or the complications that come with the diseases. In the beginning when you’re not very familiar with the conditions (and even sometimes when you’re well acquainted with IBD) you may start to question your sanity. I know I did more than once.
Right after diagnosis, I had a meeting with the GI who diagnosed me. She told me that most people go on to live normal lives. “There are many athletes who do really well and continue their careers,” she assured me, “You’d never know they have IBD!” She also told me that many people flare only once and never have a problem again. While this gave me hope right after my diagnosis with ulcerative colitis and made me feel better, it was NOT helpful.
For me, things never really got “better.”
I was on steroids, nine HUGE orange pills and several other vitamins and supplements a day. The diarrhea and the blood continued. My mom has Crohn’s disease. She’s only had one really bad bout with Crohn’s and has gone on to live a normal life. Why weren’t things improving for me? I remember calling her one afternoon questioning her about the blood. “Oh, well, you’ve been diagnosed with IBD. Things will never be the same again!” Wait a minute… didn’t she just tell me a lot of people went on to live normal lives? And what about my mom’s case?
By the way, I was told by two different GI doctors (not specializing in IBD) that blood was normal because I have UC. Later on, I was told by an IBD expert that blood was NOT ok and I should never accept the fact that I was constantly having GI bleeds. Don’t you just love conflicting information??? Is it really any wonder why patients question the state of their mental health?
With so much clashing information out there, it’s easy to wonder just how sick you really are.
Not to mention the doubters. You know the ones… people in your inner circle who downplay your disease because their uncle’s wife’s cousin’s grandpa is on medications that control his IBD beautifully… you must not be doing something right otherwise you’d be better, too.
Another thing about my own battle with UC was the fact that I was able to work most days (granted, I had the opportunity to work from home when needed). During my worst flare, I was able to work. It wasn’t easy, but I did it. I had to! How else was I going to pay my medical bills? This, too, made me question how sick I really was… and maybe it was all in my head?
Add all this doubt to the steroids we often have to take, (which make you feel crazy anyway) and you really wonder just how sane you are.
The truth is, you’re NOT crazy. You are sick.
You really do have a disease and it really is as bad as it makes you feel. IBD is no picnic. If you didn’t keep up with your treatments, you would be much worse off. It is so important to do your research and look for good resources. Read up and really get to know your disease. Knowledge is power. And it will help you feel a little less crazy when your doctor tells you that bleeding is “normal” when you know for a fact, it isn’t.
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