Part II: Pharm Aid
Along with the change in diagnosis to Crohn’s Disease was the urgency on behalf of my doc to get me on a new course of medication in order to get my inflammation under control. He wanted to start with Remicade (Infliximab) and I needed to get blood tests and all that to get started. After talking over the benefits and possible drawbacks with my family (and my aunt with Crohn’s that’s been on Remicade for a decade), I agreed that we would try Remicade. (In proofreading this I notice that I say “we,” because for me it’s very much a family decision) I remained on the Cipro & Flagyl to keep the infection in the abscess down while I started on the Remicade.
Years before, when I first learned of Remicade and it’s biologic component, I said that I wouldn’t go on something like that. The idea that it could alter my body for good was scary. However, my doctor allayed my fears, saying it was something we could try and if it didn’t work, then we’d try something else. I told him that when I first went on the SCD in 2004 I said I would give “science” until I was age 50 to find a cure for Ulcerative Colitis-and now Crohn’s. In making his case, he asked me what I was waiting for, which I conceded was a good question. He also said that while I was on the biologics, if science suddenly found a cure, that we could discontinue the biologic and take the (theoretical, nonexistent) curative. This made sense and played into my agreement to take Remicade.
I had my initial intravenous infusions through December and then January, but I was still feeling the abscess pain. I went to an acupuncturist on the advice of a friend who told me he had seen some improvement in his psoriasis as a result of treatment, and I was desperate to get rid of the agony. (Yes, I know that psoriasis and Crohn’s Disease are different.) A couple days after my first treatment with the acupuncturist, the pain got worse. I was supposed to have a follow-up appointment the next week but cancelled that one while I tried to get better. The week after that the pain wasn’t as bad so I went for another treatment (not using needles but a magnet roller on my back and a laser in my ear?), but again the pain returned in a day or so. I stopped that treatment and relayed my continued abscess troubles to my GI doc who recommended I see a colorectal surgeon and gave me a few referral suggestions.
Around that time I had a blood test to see how the Remicade was doing and found out that my body was chewing through the medicine (I had zero amount of the drug left in my system at the start of a treatment, typically there’s at least some still floating around) and I was already producing antibodies to the drug, which meant Infliximab/Remicade wasn’t going to work for me. (It was at this point that I started wondering if I was a mutant of some sort.)
So, I stopped the Remicade infusions after only two and a half months. The colorectal surgeon I went to wanted to do another MRI to see about the pain. From the MRI they could see that the abscess was pretty much all internal, no external fistula or eruptions. The surgeon said there wasn’t much they could do, and I should stay on the antibiotics. Which is good, but when you’re in that much pain, it’s cold comfort.
Let me explain what I mean by “pain.” The abscess is essentially a small pocket of fluid. Wikipedia says “An abscess is a collection of pus that has built up within the tissue of the body.” They’re normally painful, I guess, I don’t recall having one elsewhere. I’ve had boils before, but those haven’t been particularly agonizing. But not like this.
Now, imagine a painful collection of pus situated near your anus. Where waste is constantly building up as it exits your body, applying pressure on the collection of pus. You feel that pressure and pain when you sit. You feel it when you stand with the force of all of your insides weighing down on that space between your legs. That’s a lot of pain, in just about every way you sit or stand. It’s exhausting.
To mitigate the pain, I’d walk around half-bent over. If I were lying down, I would constantly fidget my feet, putting pressure on each other as they went around and around. If I were sitting, I’d be contorted in the chair, listing far over to one side, maybe starting on the left until that got too uncomfortable, and then I’d twist around to the right to try and feel better that way. It’s a horrible way to live, and that’s how I was living pretty much every day.
Continuing my journey to get rid of the pain, we explored other options. Since Remicade was a no-go, Doc recommended starting on Humira (Adalimumab) which meant giving myself a shot every two weeks. I stayed on the Cipro & Flagyl on the recommendations of the doctors, the thought being to keep the infection of the abscess down until the Humira was in my system to work on the inflammation.
I started Humira in late April 2017, which was its own traumatic experience. If you’ve never had to give yourself an injection, even one as easy and automatic as the Humira shot “pen,” there’s a lot of feelings and emotions that rise to the surface. They did for me, anyway. After a good amount of tears, I sat with the Humira nurse and my wife as I administered the four loading doses. 4 shots for my first treatment, then 2 shots two weeks later. After that, I kept on the maintenance doses, giving myself 1 shot every two weeks. Before long I had quite a collection of used pens in a sharps container.
Next: A Withering Spring