This isn't [blood] working.
Since my hospital stay in August of 2017, I've seen my Gastroenterologist, Dr. Johnson, about once every 3 months. My last appointment was in March. I'd been on weekly (as opposed to bi-weekly) Humira for a little over 2 months at that point, and although not entirely gone, my Crohn's symptoms had felt like they were lessening. I use my Humira app to keep track of symptoms, which is very helpful in my conversations with Dr. Johnson.
I experience the occasional sharp pain in my guts. Sometimes there's cramping, followed by an urgency to go to the bathroom. The most common of my symptoms is pain and blood during bowel movements. I also have a sharp pain on my left side when I take a deep breath; after a pulmonologist ruled out issues with my lungs, we're thinking its from inflammation putting pressure on the area. Most concerning to Dr. Johnson is if I ever experience constipation or a heavy, bloated feeling in my guts. Since my hospitalization was due to abscesses caused by ruptures in my intestines - which in turn were caused by a blockage due to inflammation - any obstruction in my intestines, even for a short amount of time, could cause another rupture.
We both agreed that there was still time to see if the Humira was going to fully work within the goal of a 3-month timeframe. So she ordered blood work and told me to schedule another appointment.
I'd think that just about anyone with a chronic disease would eventually become pretty decent at reading their lab reports, with a particular focus on which components are important to them, given their disease state (i.e. diabetics watching their glucose levels, or people with liver diseases watching their ALT/AST). In my case, I focus on two tests: my C-Reactive Protein levels and my Erythrocyte Sediment Rate. Both are blood tests that indicate inflammation in the body. And when both came back high on this last set of labs, I knew I'd be getting a call from Dr. Johnson's office.
At this point, its been over 3 full months on weekly Humira, and I wish I could say that I'm symptom-free. I want the Humira to work - injecting myself every week is still more convenient than needing an infusion in my doctor's office once every 6-8 weeks, which is what I'll likely need to go to if I keep experiencing symptoms. The Humira may be keeping the worst at bay, but it hasn't put my Crohn's into remission.
Stress is most definitely part of this increase in symptoms. Work has been worse than usual lately with May sales meetings coming up, and the long hours have prevented me from exercising as much as I'd like. I've gotten one run in so far this month, and it looks like its gonna stay that way. May is looking much more promising though... I'm already signed up for 3 runs, with a 4th likely.
With the test results showing inflammation and my symptoms flaring up this way, its looking very likely that Dr. Johnson is going to have me go through either a CT scan or a colonoscopy, so she can see how my intestines are faring. My next appointment with her is mid-June. The good thing is... she's more than willing to work around any runs I may have... so at least there's that!
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| Saturdays are my injection days (thus the big circle)... any day with a little blue dot under the number is a day that I logged a symptom. |
I may have missed a day or two, but for the most part had kept up with logging symptoms. 3 days out of a month seemed like a good start, since the goal with Humira is remission within 3 months of starting. But I wasn't going to sugarcoat it with Dr. Johnson... I was still having symptoms.
I experience the occasional sharp pain in my guts. Sometimes there's cramping, followed by an urgency to go to the bathroom. The most common of my symptoms is pain and blood during bowel movements. I also have a sharp pain on my left side when I take a deep breath; after a pulmonologist ruled out issues with my lungs, we're thinking its from inflammation putting pressure on the area. Most concerning to Dr. Johnson is if I ever experience constipation or a heavy, bloated feeling in my guts. Since my hospitalization was due to abscesses caused by ruptures in my intestines - which in turn were caused by a blockage due to inflammation - any obstruction in my intestines, even for a short amount of time, could cause another rupture.
We both agreed that there was still time to see if the Humira was going to fully work within the goal of a 3-month timeframe. So she ordered blood work and told me to schedule another appointment.
I'd think that just about anyone with a chronic disease would eventually become pretty decent at reading their lab reports, with a particular focus on which components are important to them, given their disease state (i.e. diabetics watching their glucose levels, or people with liver diseases watching their ALT/AST). In my case, I focus on two tests: my C-Reactive Protein levels and my Erythrocyte Sediment Rate. Both are blood tests that indicate inflammation in the body. And when both came back high on this last set of labs, I knew I'd be getting a call from Dr. Johnson's office.
At this point, its been over 3 full months on weekly Humira, and I wish I could say that I'm symptom-free. I want the Humira to work - injecting myself every week is still more convenient than needing an infusion in my doctor's office once every 6-8 weeks, which is what I'll likely need to go to if I keep experiencing symptoms. The Humira may be keeping the worst at bay, but it hasn't put my Crohn's into remission.
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| As you can see from those little blue dots, it hasn't been a great week, symptom-wise. |
With the test results showing inflammation and my symptoms flaring up this way, its looking very likely that Dr. Johnson is going to have me go through either a CT scan or a colonoscopy, so she can see how my intestines are faring. My next appointment with her is mid-June. The good thing is... she's more than willing to work around any runs I may have... so at least there's that!
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