This is my 6 week update of using helminthic therapy for severe Crohn’s disease and total food intolerance.  My plan is to post an in depth, written update every 6 weeks. And post a short, video update every 3 weeks on Instagram at @letshealIBD.

Let’s hope I can stick with it!  And let’s hope these wormies work!!

This post will cover:

• Inoculation day

• Weeks 1-5

• How I feel now

Inoculation Day

6 weeks ago I inoculated 8 NA helminths for the treatment for IBD Crohn’s disease. Immediately upon putting the bandage on my arm, I felt nothing. Within 2 hours though, I began to feel itching. Then some burning. The feeling peaked for me around 3-4 hours after inoculation. With the inoculation sight becoming quite itchy, and burny.

This only lasted a few hours, and was never unbearable.

The next morning when I woke up I felt completely normal. I left the bandage on for 24 hours total just to be sure the worms had ample time to transfer. When I removed the bandage I could actually see 8 distinct marks where each of the worms had gone in.  I felt relief to see the marks (especially with my earlier FAIL) because they confirmed the inoculation had worked.

Within a few hours these marks became more faded, and disappeared within 48 hours.

I never felt any euphoric *bump*  over the next few days.

Weeks 1-5

It is important to remember that I have been taking 16 mg of prednisolone daily. This may mask my worm flu symptoms. The steroid is also helping me manage my severe IBD symptoms. Although I cannot take it long term.

These past 5 weeks overall I felt good. There are a few factors I feel have contributed to this. Including:

• Prednisolone

• Recently having an abscess surgically removed 

• The general ebb and flow of IBD

Right now I am only having 2 BMs a day, both usually in the earlier morning.  I often have painful stomach cramps around each bowel movement. 

I am currently eating a massive amount of food. More than I have been able to eat in weeks.  I have gained over 8kgs/ 20lbs in the past 6 weeks!  Which I desperately needed because after my last surgery I was down to 42 kgs.

I do not feel as if the worms have made a difference yet. It is still too early, although it’s hard not to look for signs of them. It takes 3 weeks for them to even reach your intestines. And only at the 6 week mark do they start producing eggs.

I have had individual days where I felt slightly worse. Day 4 post inoculation, and then again around day 30 I had some minor stomach symptoms. Each time for a few days.  I wondered if these symptoms were caused by worm flu.

But it is really difficult to tell the difference between my near constant IBD symptoms and any potential worm flu symptoms.

On these potential ‘worm flu’ days I experienced

• Feeling a bit ‘off’

• Having more urgency in the morning

• Waking up earlier in the morning to go poop

• Having more stomach cramps and pain than usual

I do believe these symptoms could have been because of worm flu. Especially because I (unintentionally) took 8 NAs my first dose!

How I Feel Now

In general I am definitely feeling pretty good. I am just so happy to be able to eat food. Although right now I am feeling slightly worse than 3 weeks ago. This could be because the prednisolone isn’t working as well. Or the worms are giving me worm flu symptoms.

My doctor has advised me against taking prednisolone for more than 3 months. So I intend to continue taking a full dose (16 mg) for a total of 10 weeks. Then begin my tapering schedule, which will take around 8 weeks. By the time I have fully tapered off prednisolone. I will be at week 14 of helminth therapy. I will have just taken my second dose.

Ideally the worms will be helping me a bit by then. And as I taper off of prednisolone, the worms will be easing my IBD symptoms. If not then I will continue prednisolone at a lower dose.

The biggest thing I am noticing right now is my anxiety. Occasionally I get a huge feeling of overwhelm about doing helminth therapy. I am not bothered at all about the ‘gross’ factor of having worms. But I am instead worried about failing helminth therapy.

I am so desperate for something to help me. The past 3 years have been particularly hard. Most of my calories over these years have come from meal replacement shakes. I have had multiple emergency surgeries. I feel in general I have not been able to participate in my life to the level that I would like.

Reading the success stories of others using helminths to heal IBD has been like a light at the end of the tunnel for me. I almost feel as if I have put all of my eggs into the helminth basket. Which is never a good idea. But honestly, I don’t feel like I have any other baskets left to try.

It feels as if helminth therapy is my last chance at being well.

I am feeling a lot of pressure from my family to take biologics. And I feel tempted by it too sometimes. I just want the suffering to stop. And I want to do what is best for my body, and my future.

I so hope helminth therapy works for me. The hardest part of this therapy by far is being patient. It isn’t like a normal pharmaceutical drug that works within hours or days. Helminthic therapy can take weeks, months, or even years to fully work.

And the waiting is the most agonizing part.

If this therapy fails me, I fear that I might be sick forever.

Overall I have not noticed much of a difference so far with my six week helminth therapy update. But I know that it is still early in the treatment.

Right now the hardest part is being patient. And keeping faith that this treatment is going to work for me. Reading others’ success stories keeps me positive. And the prednisolone is at least making my symptoms livable.