This is my 44 week update of using helminthic therapy for severe Crohn’s disease and total food intolerance.
How I have Been Feeling the Past 8 Weeks
The past 8 weeks have honestly been a roller coaster. On April 10th after eating my lunch I got an extremely painful pain in my lower left side. I had to run to the bathroom to poo and vomit. The vomit was particularly depressing as it is the first time I’d puked in over 6 weeks.
Over the next 8 days I would do my best to ignore the pain that came in waves and was sometimes unbearable to the point where I was crouching over trying to catch my breath.
On day 8 I had a painful BM that sent me to literal tears. I could not take the pain anymore and went to the emergency room.
I would end up spending the next 6 days in hospital.
Immediately I was given intravenous pain killers, while I waited to see the gastro team. I had an ultra sound, and then a CAT scan the next day. The doctors were worried at first about a perforation, that the ultrasound thankfully dismissed.
They told me I had liquid pooling in my pelvis that led them to believe I had micro perforations in my bowel that were leaking its contents into my abdomen. And that it might burst at any time. I would have to stay for observations. I was given intravenous methylprednisolone 60 mg and a short course of antibiotics.
I had never experienced pain exactly like this before. In fact I have never experienced IBD pain so bad that I had to go to the hospital.
6 days later I was discharged. Over the next 8 weeks or so the pain would return 3 other times but slightly less each time. And the recoveries got shorter.
Now the pain in my lower left side seems to be completely gone.
This experience truly seemed to be an isolated event in my body. Other than this pain in my lower left side my IBD symptoms have been completely manageable. It’s a bit bizarre.
I never even lost my appetite. I ate every single meal they gave me at the hospital (first time ever). I never vomited again, or felt any nausea.
I know that helminths can take up to two full years to produce their full, constant results on the immune system.
I literally feel (hope) that this was my Crohn’s disease having one last go at me. And now the worms have won the ultimate immune battle.
Medication Update
As mentioned above I started on 60mg of intravenous methylprednisolone while in the hospital. I was on that for the 6 days I was hospitalized, and now I am on an oral tapering dose. Starting with 50 mg, and now I am on 20 mg.
The entire gastro team at the hospital spoke quite sternly to me about needing to get onto biologics. They told me that I need to be on an ‘entry level drug’ like Imuran first for 3 months and fail it before the Australian government would cover it under Medicare.
So I have agreed to start 100 mg of Imuran. The doctors explained that it will take 2-3 months for the drug to build up in my body, which is why I am taking the prednisolone as well as it works immediately.
I so sincerely hope that I am not forced into taking biologics… but that is definitely what will happen to me if I fail helminthic therapy.
I started a round of intravenous antibiotics in the hospital when they thought I had a perforation, but I asked to be taken off of them at day 2 or 3 when they found out there was not perforation. They were respectful of my wishes. I see no indication that these antibiotics harmed my NA colony, and there is mixed reviews on whether or not they would have. I have not noticed a return or worsening of my symptoms so I am not going to redose.
Honestly I felt so scared in the hospital that I was happy to take these medications.
I am on a fast tapering plan to get off the prednisolone and if it goes to plan I will be off of it in 2 and a half months.
Looking Forward
As of right now, 5 weeks out of hospital I feel great. But the 6 days in hospital were hard on me. Mentally especially, I have a lot of fear and PTSD around doctors, needles, hospitals, even the robes and hospital smells are triggering. When I admitted myself I was standing in the emergency room line crying not just out of pain but also out of literal shear fear.
But since then my recovery has been gradual and smooth.
My appetite is insatiable. I am not sure if it is because of the high dose of pred, or because my body is just finally hungry again but I cannot eat enough.
I would say I have been eating roughly 3000 calories a day, every day for the past 2 weeks with no sign of stopping. I desperately need the weight so I am not holding back at all and eating as much as I can.
Outside of this incident with the pain in my lower left side I am feeling great. No cramping, no nausea, no blood, no vomiting. I am eating every thing I want and enjoying it, for the first time in a long time.