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For the past three years, leaders in the field of treating inflammatory bowel disease (IBD) and the complications around it have met at the Crohn’s & Colitis Congress. These events focus on sharing new, innovative ideas among doctors, therapists, and other healthcare providers; but for the first time, there has been an online symposium for patients like us!

The Crohn’s and Colitis Foundation presented a virtual discussion where patients could listen to world-renowned experts in the field AND ask questions! Key IBD patients/advocates were also there to add even more insight into conversations we need to have with our doctors.

Drs. David T. Rubin, Uma Mahadevan, Megan Riehl, and Frank Scott with patient/moderators Aaron Blocker, Tina Aswani Omprakash, and Amber Tresca.
Amber Tresca and Dr. Megan Riehl

So what are the key take-aways for our Girls With Guts dealing with IBD?

Personalize Everything

Within the past few years, GI’s have steered away from a blanket treatment for everyone. That is why 5-ASA’s alone are no longer recommended for Crohn’s Patients and why certain biologics only work for certain people. My personal GI has explained that it’s best to look at each patient individually to discuss a personalized treatment plan.

This appears to have expanded beyond medication. Each of the speakers at IBD Insider spoke on finding the right treatment for the right patient at the right time. This includes monitoring to determine the right biologic, the right diet and exercise, and the right treatment for mental health.

Treatment update presentation by Dr. Frank Scott

Treatment update presentation by Dr. Frank Scott

Hope in progress

Tina Aswani Omprakash with Dr. David T. Rubin

For me, a difficult part of Crohn’s disease is knowing I will likely have to ask, “what’s the next option?” occasionally for the rest of my life. It can lead me into to dark places. However, I found hope and perspective in IBD Insider’s presentation.

I remind myself of what my Father had to go through with his UC in the 1970-80s to realize how far treatment options have become. More so, IBD patients had only two choices in biologic therapy just 18 years ago- and they both fell under the same classes of medication. While Remicade and Humira remain among the first attempted biologics, we have learned so much in a short amount of time.

Between the years 2002 – 2017:

  • We expanded options similar to Remicade and Humira
  • We learned adding immunomodulators to biologics is the best kind of treatment
  • We added TWO more classes of biologics

And research is only growing from there.

Researchers need us

All of these advancements in IBD treatment is because patients like us agreed to be part of one or more studies. You can participate to help find the next treatment- or even cure!

If you are on the fence about joining a clinical study, consider this:

  • There are several phases before researchers try treatments on humans
  • Patients with mild or moderate disease are needed
  • Patients in remission may also join to help find future treatment
  • You can always ask your GI if there is a way you can improve the science of treating IBD

You can also see if you’re suitable for research by going to Rare Patient Voice.

You can also look at studies on:

Want to know more from this year’s Crohn’s & Colitis Congress or watch the IBD insider presentation? Click here.

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• About The Author
Manda can attribute two things to her parents: IBD and dedication to hard work. Raised in a farm town in Illinois, Manda learned to do all the good you can in all the ways you can for all the people you can. She graduated from Bradley University in electronic media and her career led her through studio production, journalism, writing, and digital & social media. Manda took her love of adventure to Kentucky where she became an award-winning journalist, working mother, and yes- an IBD warrior. While diagnosed with ulcerative colitis in 2013, she was later diagnosed with Crohn’s disease in 2018. That hasn’t stopped her from enjoying life with her husband, two children, and their pets. When she first heard of GWG, Manda entered a guest blog about her family tree and IBD. She was soon smitten with the GWG Facebook group where she found support, advice, and friendship. As a communication specialist with a love for developing relationships, Manda is elated to be the group’s Director of Development!
Watching Crohn’s Attack My Daughter… Healthy choices and my new normal…

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