Progress in the IBD World

I know how easy it is to get frustrated with this disease. After all...

• It is widely misunderstood by the public and a lot of medical professionals
• The treatments are very trial and error and often come with terrible side effects
• Many IBD patients need to undergo surgery which wrecks havoc physically and emotionally
• There is so much unpredictability
• It is hard to plan and maintain relationships/friendships
• It can be difficult to have (or maintain) a career
• Our disease impacts our loved ones which adds in a lot of guilt
• The financial stress of living with IBD is enormous
• The future is so uncertain
• We live in pain quite often
• We have an invisible illness so oftentimes, we are not believed
• We feel alone

I could go on and on.

However, with all those frustrations and the terribleness that can come with living with a form of inflammatory bowel disease (IBD), I want you to know that there is hope. If you are currently struggling in any form because of your Crohn’s disease or ulcerative colitis, I want you to know...

I get it and it IS awful, but please don’t give up.

I have had the privilege of being involved with top gastroenterologists and researchers who specialize in inflammatory bowel disease, along with other companies who are working tirelessly to help improve the lives of those of us who suffer with inflammatory bowel disease and our loved ones/caregivers, and I can tell you that there is progress being made.

Is this progress being done fast enough? ABSOLUTELY NOT. Will we see drastic changes over the next month or even year? Doubtful.

But, it does make me feel really good to know that there is a ton of money, people, and things being done in order to improve our lives. There are lots of things being done to better understand what exactly inflammatory bowel disease is and where it comes from. There are also a lot of new medications currently in the testing phases.

Personalized care is what the future holds for IBD, in my opinion.

I have heard a lot about how there will be ways to identify certain genes in the microbiome in order to better predict what type of inflammatory bowel disease a person has, the likely severity (mild, moderate or severe), and better pinpoint what medication could help manage (or maybe with time eradicate) the disease.

There are new, less invasive tests today that weren’t available five or ten years ago. There are huge companies taking a vested interest in studying, helping, and working to improve the quality of life for people who suffer from Crohn’s Disease or ulcerative colitis. Patients are actually helping to shape the future of inflammatory bowel disease which is incredibly rare.

There are 1.6 million Americans living with Crohn’s Disease or ulcerative colitis (IBD). No matter where you are in your journey, please remember that things in the medical and scientific world are always changing. There are breakthroughs being made everyday in various areas. Stay connected to others in the chronic illness/IBD community. Heck, join our community! It helps to feel a part of something since I know IBD can leave you feeling very isolated and alone.

I am not telling anyone reading this not to be frustrated.

I am not telling anyone not to be fed up. I am not telling anyone to just have a positive attitude. I am not telling you to move your pain to the left side (a doctor told me that once!). I am not telling you not to scream and cry about your situation. I am not telling any of you to not feel the emotions that are so NORMAL to feel.

I do even understand if you feel hopeless right now. Just hang on. Do whatever you have to to keep yourself afloat. And if you need to vent in the meantime, that is one of the things we are here for!

There is hope….

What are some of the things you personally would like to see (aside from it being curable, of course) being done in the IBD community? What type of things do you feel would help improve YOUR quality of life?