Posted by Lexa Fenster on March 13, 2019
After suffering for months (including losing 20 pounds, requiring blood transfusions, missing junior prom because I was in the hospital…) I was told I have ulcerative colitis, a disease with no cure, and that I would need medication for life. Hearing this traumatizing news, I knew my life would be changed forever. I thought I would never recover, and the sickness would continue. I did not know anyone else that had IBD, and I felt alone.
Looking back on my sickest times, I can see very clearly that the one thing I wished I had was someone else with IBD who I could talk to...someone I could relate to and who could understand what it’s like.
After what felt like a lifetime of being sick, I eventually began to get better. The feeling of not having symptoms was like a miracle. Finally, at one doctor’s appointment, I was told I was in clinical remission. The news seemed surreal. Even though I was well, my GI doctor still suggested that I talk to a GI psychologist. Now that I was in remission, I felt like it was pointless to talk to someone, but I decided to try it any way.
Immediately after starting to talk with her, I began to feel emotional. Hearing her ask questions such as “What was it like when you found out you had Inflammatory Bowel Disease?”, and “How does it make you feel knowing that you are going to be on medicine for life?” brought back memories of being in the Emergency Room and hearing the words “ulcerative colitis” for the first time. I felt like I was going backward, not forward! Then she recommended a few websites that I could look into that helped raise awareness for IBD. That is how I found ImproveCareNow.
ImproveCareNow was exactly what I wished for when I was newly diagnosed...it was a place where I could connect with patients who understand what IBD is like. I immediately signed up to join the PAC (Patient Advisory Council). For me, it has been so beneficial to communicate with other patients with IBD because it showed me that I was not alone. I was able to see that life does get better and know that even if I do go into another flare, I will get through it. I will always have the PAC and other members of ImproveCareNow there for me, along with my family. It is amazing to see how everyone in this organization helps each other.
Overall, if I could go back in time and talk to my newly-diagnosed self, I would say:
💚 I know it seems impossible, but you will get better!
💙 When you have symptoms or go into a flare again, you will be strong and fight through it, no matter how challenging it can be at times.
💚 Being in a flare may make it seem impossible to get to remission, but it really can happen.
💙 There are other patients out there with IBD. Find them, reach out to them, connect with them and they will help and be there for you.
💚 The Patient Advisory Council is a great group of patients to connect with so you know you are not alone in this.
💙 Get support when you need it and when you’re ready you can support others who also have this disease.
💚 Unfortunately, IBD is an “invisible disease”, so it‘s hard to tell if someone has it. The people closest to you might not know that you are suffering every day. Tell them. Being open about IBD is truly helpful.
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