(We asked Crohnology members who have had the disease longer than 30 years to tell us what it was like ‘back then’, and what has changed the most. This guest post is a response by member Dewey T. )
I was diagnosed 38 years ago, back when they didn’t have the courtesy to sedate you before probing your innards. It was downright medieval!
While the disease still stinks — yes, I went there — it’s a far cry from where it was back then. Before I had my colon extracted I was in the hospital twice, and they treated me with — if I remember correctly — all of 20mg of prednisone as the strongest dose. Can you even imagine? Back then, Remicade was still a dream.
When I was diagnosed, my doctor — who happened to be Jewish — leaned across the desk and said to me: “You have a disease that is primarily found in middle-aged people and often of Jewish ancestry, yet you fit neither cohort.” Now we see a wide spectrum of diagnosis and the meat of the age group seems to be 15-34 or something in that neighborhood — versus the > 50 age group. But has the disease changed, or do we hear less of what my pediatrician said: “Oh, he just has a nervous stomach…”?
I personally believe we have better diagnostic tools and better-educated doctors who are able to call the diagnosis sooner. Although I will note that in parts of America, this still seems to be a struggle. We now have IBD centers, we now have IBD specialists, even Nurse Practitioners who are focused on IBD. It is a much improved environment if you end up with the Inflammatory Bowel Disease diagnosis.
In the intervening years, they’ve added not only mesalamine as a first line maintenance med, but also the immunomodulators, and now a third line on top of the pyramid: biologics. Even ten years ago, there was only one biologic, Remicade; now we have better than half a dozen.
They also recently turned the medicine pyramid upside down, especially for Crohn’s patients, and have discovered that even after surgery a Crohn’s patient should be placed back on the big meds to ward off the need for another surgery.
Yet I see all the time the reluctance of newly diagnosed patients to use these beautiful new tools. I will admit that I punted for a year the start of using my first biologic — a year I now wish I had back. These are arguably disease path altering medications, and while the headline risk of cancer is very real, the statistical chance is very small — about 4 in 10,000.
We have the Internet now, we have the CCFA doing all kinds of amazing things in raising awareness and raising funds with program likes Take Steps and Team Challenge. We have Internet-based support networks, in addition to the now organized local support groups that the CCFA facilitates.
These are all great tools and significantly mitigate the isolation that a Crohn’s or Ulcerative Colitis patient is likely to face. Researchers now suggest that with advances in understanding the microbiome, it is now only a question of when — not if — we find a cure.
Whether we find a cure soon or not, I am ecstatic that we now have an ever growing toolbox with improved treatment options available. May the work continue and may we find a cure someday.
We would love to help you tell your story about IBD. For more information, please see our guidelines on guest posting for the Crohnology blog.
Photo courtesy of the author.