When All Hope Seems Lost
As IBD patients, we have all had at least one moment where we lost hope when battling this disease. Whether it be that we feel that we are running out options when the next medication fails, or thinking being sick and missing on life’s fun moments will never end.
I have personally felt like I had no hope left on more than one occasion. When I was in the corporate world, I had to create annual goals that were both personal and professional. Each year, one of my personal goals would be “not to be hospitalized” yet year after year, I never reached that goal. I could not go more than 12 months without being hospitalized for a flare. How was I to continue on this path for the long term maintaining optimism that everything would be ok?
Losing hope with medications
In addition to annual (and sometimes bi-annual) hospital stays for flares, I was constantly losing response to every biologic I tried. And, as you know, once you lose response (and subsequently flare) you can no longer continue on the medication. I felt like I was at the end of the rope, having tried 4 biologics that were unsuccessful, I felt that I was officially out of options. I was giving up hope.
But, every time I came close to giving up hope that things would turn around, a silver lining showed its light and I gained confidence that everything would be ok. While it was not always easy, this is what helped me maintain a sense of hope that I would one day be in remission, feel like my old self again, and get out of this never-ending spiral.
How I didn't give up hope with IBD
Note little wins
I wrote down any good thing that happened to me that day or week. Some people call it a “gratitude journal” but to me, it was just a way of getting through the days without focusing on all that was going bad. Believe it or not, there is some glimmer of happiness in every day, even if it is just that you successfully hook your necklace on the first try.
Do limited research
Truth: I never Googled or searched Crohn’s symptoms when I was first diagnosed. Call it naive, but I didn’t want to know what may or may not happen in my future. I was thrilled that I didn’t know that I could have (and would have eventually) formed a life-threatening abscess on my small intestine. I didn’t know that Crohn’s patients can suffer from fistula, anal fissures, or anything outside of the gut—and am glad I didn’t. To this day (knock on wood!) I have not experienced any of those and may never will. So, why fill my head with unnecessary worry that may never happen? In some cases, ignorance is bliss, and this is one of them.
Have faith in medical breakthroughs
Medical discoveries are being made daily, and as a Board member of the Crohn’s & Colitis Foundation of the Philadelphia chapter, I see how much research is being done to offer us more treatment options and medications. Leaps and bounds have been made in the medical industry for IBD, and I had always maintained faith that new medications would continue to come out and that one day I would find the one the got me to remission. Turns out, it was Entyvio that did the trick, and it was not even on the market when I was diagnosed 6 years prior. Good things happen overnight—you just have to believe in it.
As I mentioned above, it was always when I was on the verge of losing hope that something would happen that would bring me back to holding on to hope. And, when it is impossible to have hope naturally, sometimes you have to choose to be optimistic. I had to make conscious decisions to stay afloat and not go down the metaphorical toilet of doom. Some days were easier than others, but I truly believe that if you keep your mind in the gutter, that is where the rest of your body will follow. Staying positive, surrounding myself with others who lifted me up rather than weighing me down allowed me to propel through the negativity and maintain hope that it would all work out.
And, after 7 years, it finally has.
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