Advocates Write Letters to Their Newly Diagnosed Selves
In honor of World IBD Day on Sunday, May 19, 2019, our community advocates wrote a letter to their newly diagnosed selves that they are sharing with others. Here we share a part of each letter. Click on the links provided to read the full letter from each person.
IBD is serious and I was in denial at first
"Crohn’s Disease is not easy. It is a serious disease and yes you can die if it goes untreated because your digestive system is vital to your health. It is quite literally how your body is able to function. Period. Not only that but if things get severe and you need surgical intervention, complications can arise that can be life-threatening. I am choosing to tell you this first because when I was diagnosed, I was in denial. I found it impossible to come to terms with the fact that I had a disease. And in turn, I did the bare minimum, which was to follow whatever my Gastroenterologist told me, blindly." Read the full letter here.
Family and friends will not understand IBD at first
"At first your friends and family will not understand how difficult it is living with this disease. You are going to have to sit down with them and explain how it affects every aspect of your life. It starts with always having to be near a bathroom. Then you have to try to explain to them those certain foods such as roughage, seeds, popcorn, veggies, red meat, and dairy will affect your gut. If you plan on teaching, Paul, which I know you went to school for, I would recommend getting an accommodation plan which allows you to leave the classroom any time you need to, so you can use the bathroom." Read the full letter here.
Flares will come out of nowhere
"If there’s one piece of advice I’d give you, it’s to not keep trying to find a ‘solution’ or a logic to this disease. As it turns out, you’ll end up spending years feeling as if you could just get it within your grasp if only you tackled your stress/worked on your diet/slept the perfect number of hours a day. Yes, these things are important (for anyone’s health, IBD or not) and diet will play a big role in helping to manage your symptoms. However, you’ll also have those flares that come out of nowhere with NO explanation whatsoever. You’ll have times when drugs don’t work. You’ll have times when you feel fine but your medical results are not and times where your blood results are perfect but you can’t drag yourself out of bed." Read the full letter here.
There is so much that you will have to give up because of IBD
"The next few years will be a test, and I don’t mean the endless blood work, CT scans, MRIs, Small Bowel Follow-Through, or Colonoscopies. You will be tested on your strength, relationships with others, self-confidence, and willpower to overcome the disease and the negativity that comes with it. Vacations will be cut short or completely canceled, relationships will be strained, work will be a challenge, and you will have to give up some of your favorite foods all while trying to keep it together from the outside so that no one sees the emotional pain you are suffering on top of the physical pain." Read the full letter here.
Are you newly diagnosed or do you have any advice for someone newly diagnosed?