It has been a while since my last post but today is as good as any other so why not write something. I restarted my certolizumab pegol (Cimzia) and 6MP for Crohn’s a little over a month ago and almost immediately started feeling terrible. I had no energy, shortness of breath, dizziness, my eyes got jaundiced (yellow) etc. Blood work showed that I was severely anemic and developing liver damage. I had to stop the Cimzia+6MP combination after 1 injection and since then I have not been on any medication. Currently I am being seen by a hepatologist (liver doctor), hemetologist (blood doctor) and obviously my gastroenterologist. For the first time in about 9 years I am not on medication for Crohn’s and I wouldn’t venture to say I feel relieved. I’ve had to stop medication for the wrong reasons.
A month into dealing with these issues I still feel exhausted but encouraged that my dizziness and shortness of breath have improved. Long story short is that my blood counts have finally picked up but my liver damage persists. I’ve researched the liver for about 5 years at various institutions under some famous hepatologists so my knowledge of the liver vastly exceeds anything I know about IBD. To say I am not concerned about balancing my future medications for Crohn’s disease with my liver would be a huge lie. The various treatments that I have not had for Crohn’s disease (vedolizumab and methotrexate) have some notable limitations in my case, which I reiterate MY case. No need to get into that but suffice it to say treating my case will be a careful balancing act between penetrating Crohn’s disease and liver damage.
So what is health limbo? It’s this last month. It’s not knowing. It’s the impending feelings I have toward not treating Crohn’s. It’s the uneasy wait and see if my liver improves on its own. It’s being concerned I may have primary sclerosing cholangitis. It’s having more questions then answers. It’s feeling like a drag on other people. It’s wanting tests to figure out causes yet having to wait. Its where I was as a kid before I knew I had Crohn’s. Health limbo is not a fun place to find yourself.
So how do I deal with it? If you ask the people close to me they will tell you that I don’t deal with it well 🙂 they’re probably right but here is what I try. Mental distraction and trusting my doctors. I’ve been diving into research projects and this gives me a sense of calm by having to think logically and then critically examining my work finding fallacies, redundancies or alternative explanations I didn’t anticipate. I can and often do spend days thinking about the best way to answer a single question and then what are the problems with the way I have tried to answer it. Something Im even more excited about is that I am going on a trip to San Francisco toward the end of June which is a much needed respite from whats been happening.
That’s one side, the other as I said is trusting my doctors. I think everyone should carefully vet the people involved in their care and then once you settle in on people you like and trust you have to do just that, trust them. I’m not ignorant of the value in a second opinion so I frequently do get them but more often then not after a careful vetting process the second opinion usually aligns with what my doctors are telling me. I am fortunate in the sense that I have two very close friends who are gastroenterologists and I go to them whenever in doubt. Not everyone has this luxury so I am telling you, never be hesitant to seek a second opinion if you feel like you need one. It doesn’t reflect a lack of trust, it shows you’re a reasonable person who wants as much credible information as possible so as to make an informed decision.
So thats what has been going on with me. I’m hanging in there, excited about current and future research projects, even more excited for San Francisco and just trusting my doctors. Do I feel down about being in this little rut right now? Yes absolutely, but this too shall pass and finding good healthy distractions that you can do even when you are feeling terrible helps in these situations. That’s why developing hobbies or interests you can do while sick is really important.