12 Week Helminthic Therapy Update
On July 21st 2023 I started helminthic therapy for severe Crohn’s disease. I will be posting an in depth, written update every 6 weeks. And posting a short, video update every 3 weeks on my Instagram account @letshealIBD.
This week we will look into
- How I Have Been Feeling
- My Current Diet
- My Plan Going Forward
How I Have Been Feeling
Basically from the beginning of September to now in mid-October I have not felt well at all.
Unfortunately any improvements I was seeing before, fully returned. And some symptoms even seem worse than ever before.
I have been taking the steroid prednisolone since July. I started with 16mg.
I tried to taper unsuccessfully off of prednisolone two separate times during the past 6 weeks. Both times I would drop my dose gradually by 2.5 mg with 10 day intervals. Both times when I got down to 10mg my IBD symptoms would slowly and progressively return.
Usually it would start with more daily bowel movements. Then more nocturnal bowel movements. Then nausea and pain would return. The second time I tapered I stayed at 10 mg for longer and my symptoms definitely got worse than the first time I tapered.
I ended up in a situation where my nausea was so full on. I used all of my work sick days. And then spent the rest of my pre-work mornings holding onto a bucket.
It seemed to me that with the lower dose of the steroid, when I was far away from my last dose (e.g. early mornings). I seemed to suffer. Then once the dose kicked in (about 30-60 minutes after taking it). I would feel slightly better.
I have spent the last 3 weeks waking up every 2 hours of the night to poop. That’s 11pm, 1am, 3am, and then again at 5am. Every other night or so I would become so nauseous I would vomit. This is so exhausting. I would wake up in the morning feeling completely unrested, and exhausted.
And I know sleep is the foundation for health (ADD INTERNAL LINK). So I am sure that this lack of good quality sleep would have affected my overall health, and made my IBD symptoms worse.
At my partners insistence I went back up to my full dose of 15 mg of prednisolone. Having to go back up to my original dose, the dose I have been trying to taper off of for so long, has all been a bit depressing.
It feels as if I am trapped on prednisolone. Like I can’t get off of it without my symptoms becoming literally unbearable.
It took over 7 days of being back on 15 mg before I stopped vomiting almost daily. It does seem now that my symptoms are improving.
Overall in between painful bowel movements. And the restless nights I have had. And the horrible nauseous mornings. I have been feeling okay. I am trying to stay positive. And focus on the fact that I feel better than I did a few months ago
My Current Diet
For the past 2.5 years my diet has been extremely limited. I would say that over this period, at least 50% of my calories have come from meal replacement shakes.
Since my last abscess removal surgery I have not been drinking the shakes at all. I simply cannot stomach them any more.
I had a bad experience where I vomited the shakes quite a few times. And just like irresponsibly drinking tequila in the 11th grade… the shakes have been ruined for me. Even the smell of them puts me off.
I have been following the IBD AID diet. I am staying mostly in phase 1 and phase 2. I am doing this because I am not feeling sick right after eating. I know this is just because of prednisolone. And not real indication of my symptoms.
I have been cautiously enjoying a way wider range of foods. And it has been wonderful. I was even able to eat the dairy free, gluten free meal at a friends wedding recently, whereas before I would have had to bring my own food or drink shakes.
My Plan Going Forward
I am quitting my job and taking some time off starting in about 3 weeks. So I intend to stay on the full dose of prednisone until this time.
I am just so scared of more suffering. And I know that the levels of suffering I have been through have already affected me mentally. And I just don’t want to deal with trying to keep it all together while I work full time at a physical job for 12 hours.
Also I am aware that my job has probably been too hard on my body. But I genuinely love it, and my coworkers are so supportive of me. And most days I don’t suffer because of work. But overall I think it has been harmful to my physical health.
Once I am finished work I will follow some advice a friend gave me. She suggested I taper off the prednisolone even slower. 0.5 mg per taper, with 7 days in between.
I don’t know if I can break my pills into 0.5 mgs, as they are 5 mgs. As far as I know only 25 mgs and 5mgs are available in Queensland. But I am going to take her advice and taper slowly this time.
By then it will also have been more than 4 months since my original helminthic therapy inoculation. I am hoping that with a slow taper. My wormies will be able to ease some of my symptoms by then, and I can safely come off of prednisolone.
It is currently Wednesday when I am writing this. I plan to take my second dose of NAs this Friday.
Even though I have not seen any improvements at all so far, I have committed myself to trying this therapy for the full 2 years. I know when this therapy works for you, it can provide great long term results. And I want to give the worms a fair go, so that I don’t have any regrets or questions later on.
According to the helminthic therapy Wiki timeline this sounds like a reasonable hope. The wiki explains that helminthic therapy users do not usually see benefits before 3 months. Most people see some benefits between 3-5 months, but some still have to wait longer. Some may even have to wait as long as 2 years to see benefits.
I also read that some people see gradual result as their symptoms gradually improve. While others see dramatic change that occurs rather abruptly.
Especially during the first 2-3 years improvements are not always continuous. There may be periods when your disease is more active. But over time the helminths work better and more effectively with your immune system.