Before starting Stelara, my gastroenterologist gave me the Cornerstones Health Checklist and walked me through it in the office. We made a specific plan to ensure that I had all of the major items on the list done before my first dose of Stelara. The checklist is a guide for patients that helps us know what to do before treatment and helps us keep track of annual health checks and tests. The Crohn’s and Colitis Foundation also provides a General Health Maintenance Checklist that has many of the same items.
The checklist includes blood work, genetic screening, cancer screenings, vaccinations and other checks to ensure that you and your doctors are looking at your health holistically and with attention to common issues that can arise with treatment. For example, getting your pneumonia vaccine is very important because IBD patients on biologics are at a higher risk for pneumonia infections.
My doctor requested blood work to check if I had been exposed to tuberculosis, since biologics can interfere with the body’s natural ability to fight off that infection, and patients on those meds can get severely ill if carrying the disease. The blood work for TB is more accurate than a skin test. The blood work also had a vitamin panel, including B12, D and Iron (hemoglobin), CBC, and renal & liver panels. We also did a TMPT genotype test at the same time, just in case I needed to be put on any thiopurines in the future. I believe she also did a test to ensure that my Hep B vaccinations were active (I was pretty sure I’d done the whole series, but it was important to check). I verified that I’d had my flu shot, and had a recent Tdap (thanks to my wonderful local urgent care after I stepped on a nail last May while taking down an old garden shed earlier in the Spring).
I had the doctor write me a prescription for the pneumonia vaccine, the PCV13 (I’ll get the PCV23 in a year), since pharmacies or Urgent Care centers will often not give you the shot if you do not fit the recommendations of age or exceptions (which young IBD patients don’t). I also got a prescription for the Shingrix vaccine for shingles. Unfortunately, there was a significant shortage in the US and it was extremely difficult to track it down. I was lucky that on the day that I’d tried to get the shot, I found out that a Costco 40 miles away had received a shipment that morning. This was after I went to two Minute Clinics, and then called 7 local pharmacies and grocery stores desperately trying to find it. I’m still waiting now, 3 months later, for more local places to have another shipment so I can get my 2nd dose within the 6 month period. I handled the soreness from the Shingrix fine, but had a week-long red, splotchy, hot rash all over the arm and shoulder from my PCV13 vaccine, which my doctor said was completely normal.
I had a DEXA bone scan done to get a baseline of bone density, and my results came back normal. I scheduled a 6 month check up with my dermatologist and informed them of my medications and diagnosis so that we could keep very careful track of any small cell skin cancer risk and development. I also coincidentally needed an eye check up and had a long chat with my ophthalmologist about my Crohn’s related eye inflammation and what she could do if it got worse, and what the warning signs were about the more serious uveitis. I’ve previously had months and months of mild episcleritis which was misdiagnosed as viral pink eye before I had been diagnosed with Crohn’s. This time, however, we identified the primary issues with my eyes as persistent inflammation of the lids that were blocking the glands that produce the oily film that prevents tears from evaporating. My lacrimal ducts were also inflamed, but because I’m on high dose oral steroids (which is often related to the eye issues), she was concerned about prescribing steroid eye drops and instead put me on Restasis, a drop that should address the dry eye.
These checklists can help you to be armed with questions for your doctor and be prepared should your treatment plan turn out to include biologics or other medications that have broader systemic effects. I especially appreciate that the Crohn’s and Colitis Foundation checklist for health maintenance includes discussion and screening for depression. Taking the mental health of patients with IBD seriously is immensely important. With so much of our energy monopolized by a disease that zaps mental acuity and cognition, that causes huge physical degradations, that traps us close to a bathroom with constant fear and loss of dignity, how could IBD patients not feel utterly defeated and lost at points during flare ups and disease progressions?
For me, investing the energy in monitoring and maintaining my health outside of IBD gives me a small peace of mind that improves my over all emotional state of being. It takes a lot of energy, A LOT, to get these things done on the days when I’m my lowest. But, even one phone call, or trip out to the pharmacy, or one appointment feels like a monumental accomplishment. In the times when I’m feeling a little better, setting up structures and frameworks to make my life a little easier when I’m feeling low is a worthwhile investment of time and energy. For example: setting up recurring pharmacy payments and deliveries, putting household staples on Amazon Prime for monthly delivery, organizing and refilling supplies for the bathroom (the softest toilet paper, diaper cream, gentle wet wipes, etc).
I’m going to post more about mental health soon, and the importance of finding support and being kind to yourself. Be well, fellow Crohnies.