The fact of the matter is that it is not possible to use helminthic therapy as a treatment following surgery.  I have had my colon removed, so there is no place for the worms to “live long and prosper”.  There is also not really any need for the worms now that my colon has been removed.  I am feeling SOOOO much better than before.  Even when the therapy was working, I never felt as good as I do now.

I feel as though I have my life back.  I have done so many things since my surgery that I thought I would never get to do… ever.  I’ve also gotten back to things that I used to do that I thought I’d never get to do again, either.

About 3 weeks after surgery, I felt confident enough to go to my first rock concert, Roger Waters in Chicago.  Two weeks after the concert, I went hiking for the first time in 2 YEARS!

I have a followup appointment in December, I will have another surgery probably during spring break, with the final surgery being next summer.

Unfortunately I am in the hospital for a swollen foot and blood clot, I have also decided to to though with Illeostomy surgery, TSO has ceased effectiveness, and I can’t do human whipworm, as I would need to be on 20mgs prednisone.  Prednisone is no longer an option to control my UC because of severe permanent side effects.  The surgery is scheduled for this Friday at UW Hospital in Madison, WI.

At the moment, I am on 5mgs of prednisone, with my UC still under control.  I was told I would need to be on 20mgs of prednisone to start the worms, but since I won’t do more prednisone under ANY circumstances, I have had to resort to other methods.  Here are some of the things I do to control inflammation:

1. GoodBelly - This probiotic fruit drink balances and strengthens the immune system.  It generally helps my intestines “keep it together”

2. “Super Blow-your-head-off Ginger Smoothies” – I start my day off with a huge smoothie that consists of the following:

water
aloe vera juice/gel (see previous aloe vera post)
2 bananas
whatever fruit is in the frige/freezer (usually strawberries, blueberries, mango or raspberries)
2tbsp. almond butter (this isn’t really necessary, but I put it in to gain/maintain weight)
A TON of ginger – about 2 inches off a stick/finger thing

3. Turmeric capsules – Turmeric is another powerful anti-inflammatory food.  I originally tried dissolving straight turmeric powder in milk, like my GI said, but I couldn’t take it.  The taste was too unbearable.

The last 3 doses of TSO have been different than the first few.  The first week is great, things are solid and normal, however, during the second week, things start to go downhill.  Over the coarse of the second week, stools begin to soften, and eventually, by the end of the second week, they would become diarrhea.  I would then take another dose of worms and things would get better within 1-2 days.  This cycle has been continuing for the past 3 doses (about 6 weeks).

I am currently on 9mg of Prednisone, going down by 1mg/5 days, hopefully I’ll be off completely by July.

I plan to switch from the TSO Pig Whipworm from Ovamed, to the TTO Human Whipworm from Autoimmune Therapies.  The Human Whipworm is similar to the Pig Whipworm, except that the Human Whipworm’s “default host” is human, whereas the “default host” for the Pig Whipworm is pig.  TTO lasts much longer than TSO, about 18 months, as opposed to 2 weeks for TSO.  TSO is about 4.5 times more expensive than TTO, so not only will they be clinically better, they will be financially better as well.  After contacting Marc from Autoimmune Therapies, I have decided to go forward with the switch, after I talk to my GI Dr who is on board with helminths.  As soon as I get his opinion, I will most likely go through with the switch.

I am very optimistic about the switch to TTO, I hope things go well.  I’ll post more after the switch.

Lesson learned.

Interestingly enough, after the second dose, I got a stomach ache about an hour afterward (immediately after a smoothie).  It continued from about 9 until 12:30.  Subsequently, I got stomach aches after everything I ate for both Wednesday and Thursday, but things seemed to get better by Friday morning.  I’m not sure if it was a side effect of the worms or not, but I felt pretty bad for those two days.  Good news is, I feel great today!