CHALLENGE: I wish I would have known. There’s a reason why we have the saying, “Hindsight is 20/20.” What do you wish you had known at the beginning of your patient journey that would have made it easier and less scary? #HAWMC
There are things in my life that hurt when I look back on them. Things I have done in the past that I’m not proud of. Things I have said to others to cut them down. Stupid mistakes. Some of the toads that I’ve dated in the past… heck, I was a toad once or twice in my life if I really think about it. I cringe when I look back on so many things in life and I ask myself, “What were you thinking?!”
Then there are those times in my life where I shake my head at my naivety. I was young and stupid in my twenties. Young and VERY stupid. After I was diagnosed with Ulcerative Colitis, I was excited! No, no! Not excited about being sick, but excited that we were able to pinpoint why I was sick.
My mother has Crohn’s Disease. She had surgery when she was 18 to remove 15 inches of her colon. She has never been on any medications. Every now and then she’s had a few small flares, but nothing really life threatening. I’ve never seen her really sick. And she’s never had a bloody BM.
I remember waiting for the official diagnosis. Hoping against hope that it was Crohn’s and not UC. Why? Because, my Mom has done so well with Crohn’s. Well, then I was diagnosed with UC. I thought, “Awesome, I’ll just take these three big horse pills a day and I’ll be fine!”
Famous last words.
It was soon after that when I realized just how difficult the struggle would be. I had pancolitis – meaning my whole colon was diseased. Prednisone was taking it’s jolly time and I had an undiagnosed c. diff infection. Nothing was helping. My doctor was usually unavailable and I had questions. At this point, I was getting discouraged. This was becoming more difficult than I thought. I had people come up to me to let me know that their friend’s uncle’s daughter’s boyfriend’s step-dad has IBD and he’s doing just fine… so how come I was still so sick?
I struggled through the first three months. And then I found remission. Twice. The third time I wasn’t so lucky. I was sick for over a year. I was frustrated, angry and becoming more and more bitter as the days dragged by. Prednisone and an uncaring doctor didn’t help.
And then I found a treasure I wish I’d discovered ages ago. Twitter! I began talking with people my own age and with my exact problems. These people were brought together because of their diseases. There’s a great community of people out there who are constantly affirming each other and letting each other know that they weren’t alone. I found the support I needed.
If I could do it all over again, knowing what I know now, I would get on Twitter. If I could tell a newly diagnosed patient anything, it would be to seek after support. If you aren’t getting the support and care you need at home, find a support group. Support is the reason I’ve kept my sanity throughout all of this. Honestly, this is something that no one should have to face alone.
