Sometimes just being alive is something to celebrate. It’s hard to think of anything positive about the last few months. The abscesses didn’t respond to the IV antibiotics enough, and I also tried oil of oregano, propolis, laser therapy, collostrum, colloidal silver… I was told I needed a temporary ostomy to give the rectum a chance to heal. I continued to do IV antibiotics three times a day. Actually my husband did them. He became my nurse.
I set the surgery date and was marked for both a colostomy and ileostomy. I had a colonoscopy scheduled the day before, and went in with it with a six month expectation to get through the surgery, take Tysabri or Stelara for enough time to get more worms in me, raise my vitamin and mineral levels, build my probiotic levels back up, maybe even a few fecal infusions. But the colonoscopy showed such a scarred and battered rectum that it wasn’t hook up-able, so what I thought was temporary is now permanent and I am still reeling from this emotionally, since I had no idea it was so bad.
I killed the worms before surgery. Just in case they had any contribution to the infections. I cried doing it. If you’ve read through this whole blog you would know how invested I am in this therapy so the disappointment of this failure is tantamount.
I’ve since heard from two Crohn’s disease cases who were in remission but since have had more disease activity so much that one had to go back on Humira, the other Remicade. I remember a few years ago, one of the researchers who was involved in the first proof of concept CD study said that most patients had to use medications along with the worms, but the worms helped those meds work better. There aren’t that many of us doing this over 3 years, so it may be that after a year or two, the immune system overrides the worms’ effects. It could be more worms are required more often, or a combination of worms, etc. Had I been able to infect every 6 months with 10 hookworms, maybe that would have kept me in remission. Had I not tried the TSO maybe the dose of hookworms before that would have had a chance to work. Or maybe not. I can’t go back.
Sometimes I regretted not doing the human whipworms. But I heard from one UC case who had the worst ulceration in the area where the whipworms resided…and had his first solid bowel movement after finally killing them off. Another patient after getting solid, documented remission later had bad ulceration where the whipworms were and worse small bowel inflammation. So why does it work for some, for just a while, for others not at all? I was hoping by now we’d learn more.
Jasper gave me my refund back, by the way. True to his word, eventually.
I’m sitting at the UCSF infusion center, waiting for my first Tysabri infusion. The reason I did the worms was to avoid this. Yet here I am. I can’t even begin to describe the disappointment and mental pain.
The surgery didn’t go smoothly. The rectal stump blew, causing infectious fluid to leak into the abdominal cavity. I had a high fever and had to get a drain put in, which was hard to deal with. Getting used to the ostomy has been challenging. Then my intestines froze for 3 weeks and I was unable to eat without severe bloating or vomiting. I had to go on TPN, my magnesium kept dropping, the suffering seemed never-ending. I finally went home with a picc line, learning self-administration of this labor intensive fluid line that pumped all night.
Then as things slowly got better, I started getting sores under the stoma, and each bag would leak, since the drain was still in, right next to the bag, making a crease, but the wounds were also where the stitches were dissolving, so the possibility of it being a Crohn’s thing became suspect. It gets better then worse and is still painful. Now I’m waiting to see if the Tysabri helps.
The whole last year has been a nightmare that never ends. But at least the rectum is quiet now, no abscesses or fistulae. I guess the plan is to try Tysabri… If it works, then just try to enjoy some good health for awhile. Even when the worms were working, I had magnesium loss and the side effects that created, a miscarriage, the stress of fighting with Jasper, the notoriety from this blog. Watching some people get worse on worms, others miraculously better. Not knowing if it would last.
I’m almost 40 and I guess I’m still alive. But I wish life weren’t so hard. I’d sure love a long-lasting remission. I’ve suffered quite enough.