Finally, some good news to post after 2 years of misery. I’m feeling great! Hurrah!
The hookworm side effects peaked as scheduled, worst week was week 6, when I had pains in my rectum, intestine, and scheduled a colonoscopy, afraid for more inflammation. I had another round of IVig (getting 35 g a day for 4 days, or 140 g, now every 8 weeks.) on week 7, then things started going really well. Pain disappeared, and I was constantly hungry, which happened with my first few years of reinfection. From Valentines day to now, I have gained 15 pounds! I look great, albeit a little fat.
I’m also doing a lot of physical work on my garden, and on my neighbor’s farm. My back is getting stronger. I’ve dug a pond, planted 50 foot rows of peas, pumpkins, lettuces. I’m starting Fairytale Farm up again, and buying a pedicab that I will turn into a pumpkin to be both carriage and vendor for a roving farmer’s market. So life goes on.
The best news is my gastroentrologist, Dr. Terdiman, told me I could put off my colonoscopy for a few more months since I am doing so well. I’ll do an MRI endoscopy in a few weeks, and test my blood to see how things are there. Colonoscopy probably will be around June/July to be at the one year mark since the ostomy, though I’m trying to time it around reinfection, since I was planning on adding another 10 hookworms around the 6 month mark.
I’ve been doing egg counts, ye old Mc Master style, and have found 2 eggs, then 5, then 5. This was across the entire slide, not just in the grid. I’m starting to think I was infected with way more worms the first few years than I thought, since I had much higher egg counts, usually 10 – 15 at a time, using the same method. But I’ve also been taking curcumin and the IVig itself may help fight the worms. I’m going to switch over to the method that other egg counters use, involving the use of fecalyzers and zinc sulphate, so I will post my results from that soon.
The stoma itself is frustrating. I have to bind it in a hernia belt built for ostomies, though I don’t use the hole that is supposed to go over the stoma that the bag goes through, because then there is nothing to hold the protrusion of the stoma in, so I just smash the whole thing, and try to catch when I have gas or stool, then stretch it wide to give it space. We’ve cut the hole bigger so I’m not having constant leaks, but if I go more than 10 minutes without it bound, the stoma protrudes too much. A home ostomy nurse came and thought that I was not only prolapsing, but herniating as well, thus the belt. Something that the UCSF stoma nurse and surgeon didn’t think looked “too bad”, although it doesn’t comfort me to hear they’ve seen worse, because there is always worse, especially among colo-rectal surgeons who work at a huge teaching medical center specializing in IBD. Luckily, the pyoderma is still 100% gone, so the IVig is doing its thing.
I’ve been straying off my diet which is bad, because it’s not really causing any problems other than sometimes gas that gets stuck around my narrow bend in the ileal region, so I have less motivation to keep on the straight and narrow. I notice my skin is clearest and my gut happiest when I’m eating on my diet…unless I have too many nuts and raisins, or coconut and raisins. I really should just stop eating raisins. I’m afraid the area with the stricture is worse in general, and even though I tolerate kale, lettuce, and other fiber I couldn’t before, this area can get stuck for days, so I fear what we’ll find on the tests.
Lots going on in the worm world, I’ll have to write a separate blog post for all of it. But for now, at least, I feel good, and just hope it lasts longer than a few months. Viva la worms!