Month 9: No Patience

I can’t believe I’m entering month 9. Nine months I’ve waited for hookworm to work. Nine months I’ve gone through with such hope and devotion. It’s hard to do something first, without guidance. The Nottingham Crohn’s trial is unpublished. It may even be recruiting still. By the time the results are published, I will be clear whether hookworm has worked for my Crohn’s. Until then, I get to blindly wait. Wondering if and when I’ll be fully well, or if I’ll have to add something to the soup of hookworm, diet, and probiotics.

If this is it, is it enough? I am at my normal weight. My skin is clearing. I look pretty good. My arms are muscular. I have a little fat belly, which is a first. I have almost no pain, except twinges in my ankles now and then. Will the hookworm arthritis ever go away completely? Is it even arthritis? Will I ever get normal stools?

How many therapies do people wait 9 months for? 6MP only takes a few months. I was told to give Humira 3 months, but by the second month, when my CRP had tripled, Dr. Terdiman didn’t make me suffer another month. It’s true; most of the negative reaction to hookworm so far has happened in the first 4 months. This time after the first infection, my CRP dropped to 0.1 above normal. It has never been that low except the year after surgery, and then it was perfect. Will I ever be perfect again?

I’m going to test my blood next week. I almost don’t want to know. If it is elevated, I will despair. If it is perfect, I will despair. Because I’m still having sloppy bowel movements, gas, and mucus. It can’t be normal with these symptoms, but when I took my CRP at 18 weeks from the first infection, it nearly was. Which was a shock; how could I have no inflammation but still bowel symptoms? We blamed it on reinfection then.

Now, what can I blame it on? I’ve waited enough time for the main negative reaction to abate. There is no guide to say “month X and you should expect Y.” I hate doing something so blindly, and only having other blind patients to compare myself to. And even then, just one has tried this with Crohn’s disease that I am in contact with, enough time to prove success, and he is doing beautifully.

How long do I wait before I give up, or accept that hookworm has done all that it can? Since I don’t know, I wait….it feels like forever.