Tag Archives: Whipworm

Reeling It In

SO.

Reread the last post just now and I feel like it was a little too angry-faced. Or frustrated/sad-faced? A fury in real time, that’s what it was. It just goes to show ya, we UC people have colitis for a reason 🙂 emotions! oh, you guys slay me. or tear my innards into tiny pieces, rather.

Thankfully I have bounced back after that hard reality check. I’m dwelling (mostly) in the happy land of acceptance as I know I’m in for the long haul. I believe it might take a year or more to fully get rid of the Candida. I have been on the Candida diet for just shy of two months now. I am on my 4th week of Diflucan 200mgs a day. In case you were wondering, when people talk about “getting out the big guns” they are actually talking about Diflucan, 200mgs a day, for over a months time. Pray that my liver sustains me.

Last week I went to visit my gyno and wasn’t that a h0000t. Not really.

She said I still… STILL?!… have a very serious yeast infection and prescribed me some antifungal cream. I mentioned my diet to her; she laughed and said it won’t help me at all but I could stay on it if I wanted to. Um, thank you lady. Worst advice ever. “Oh you have a systemic yeast problem? go ahead and feed it sugar every single day. you’ll only be miserable until the day you die. more cream?? 🙂 ”

She sneered at my probiotic treatment too. Like, seriously… get real, physicians. Please just get real for one second. But do I say anything? No, no. I’m not about to try to reeducate my doctors, A) because I look like I’m 12 and nobody be takin’ advice from a 12 year old, especially nobody’s who spent a good portion of their life in med school. and B) I don’t have that kinda time. When you’re freezing your butt off in the freezing cold office with barely anything on, you prioritize. This time I wanted to make it out with a diagnosis and some kinda help. done and done. I go back in 6 weeks to repeat the process.

My colitis has MUCH improved, I am happy to report. Mostly formed stools, very little blood, and while I still have urgency and cramping… I only have to go maybe 3-5 times, depending on the day. That’s darn good without prednisone. I attribute this to the strict diet, and also to the candida-inhibiting drugs. I also started taking Low-Dose Naltrexone again. 4mgs at night. I think that has helped as well. Hopefully as I continue down this path I can steadily improve, now that I know what is causing this nonsense in my body.

And here’s the thing with all this. I’m considering dumping the wormies. *GASP* I know, but I don’t feel like they have “worked” for me, at least for a decent amount of time, and if anything they are lowing my immune system capabilities, which I kinda absolutely need to help fight the candida.

I’ve always believed that given the right tools, the body can heal itself. That is what God made it to do. Get a cut, and the body heals it. Break a bone, the body reforms it. Given the right application of nutrients, bacteria, and emotion, the body can heal from an autoimmune disease. So why did I choose worms after all this time?

Truth is, all along I have known that these worms did not offer a cure,  just a relief of symptoms. For years, I have been on horribly strict diets,  drug therapies, taking up to 60-something supplement pills a day… exploring emotional healing techniques and alternative medicines. It’s been a long hard road and I will admit it, I wanted something easy for once. E-A-S-Y. And throwing back a few hundred worm eggs is so freakin’ easy. I  mean you saw me right? I was even playing worm pong for cryin’ out loud. I wanted to get worm happy and stay that way forever.

So because of my childlike faith I was willing to compromise my knowledge about how the body heals and give this a try, thinking that maybe the worms would be a step in a “healing” direction. I thought maybe they would heal my gut enough and then I could heal it more in another way… And I recant, people.

I recant! I was a forefront-er on this ride out into the Wild West and even though I did a bunch of research and read a bunch of people’s experiences I was unaware of the following things until now (9 months later):

  • Whipworm can cause allergies to become worse, or even create new ones. Food, materials, fragrances, whathaveyou. Allergies come in all sorts. I am not experiencing this currently, but just to warn you, faithful readers. It could happen to you, at a theater near you, in a neighborhood that is yours… creepy creepy.
  • As time goes on, usually one must increase their dosage of whips in order for them to still be effective. Not cost efficient. Or, as time goes on, they stop being effective altogether.
  • If you lose the worms accidentally or on purpose, people are reporting that their colitis has come back worse than ever, and that the places where the worms were previously “attached” had the worst ulcerations.
  • Therefore, Hookworm is actually a better option for treating ulcerative colitis. Even though they reside primarily in the small intestine, they have a systemic effect on the body. They also help minimize existing allergies, so no worries there. They are pretty cool if ya like worms.
  • And as always, the long term effects are unknown.

So right now I’m at a crossroads. give it up? or stick with it? Maybe try some hookworm instead? I wanted this to work, I really did… but is this another “failed experiment: lesson learned” kinda thing? Anyone is welcome to weigh in on the 20 questions…just looking for some insight. readygetsetgo!

P.S. I’ll keep you posted on my decision and the “why’s” of it 🙂

Progress! (and name meanings)

Time to break out the capital letters and exclamation points, party people, cuz I’m doin’ BETTER.

!!!!!! and !!!! and yeahyeahyeah!!!

I know, right!? You probably weren’t expecting that after my last few posts (why you hatin’). But I have, to my surprise too, turned the proverbial corner from expectant patient slash experimenter to a semi-decent success story. I’m almost to scared to be writing a “good” update in case it ends up being some sick coincidence… yet I write. because I like you guys.

So why only “semi-decent?” It’s an odd term but I use it because there are levels of success in this colitis business. Usually for me anyway. Not to many of us can go from zero to complete awesomeness. True success, in my poop dictionary, would be a return to normalcy– living virtually symptom & anxiety-free. By these standards, I’m only at the semi-decent success level. I would have loved to be a full-on success story like Mike from Colon Comrades, but whatever; beggars can’t be choosers.

So here I am, on day 136/108/80 of my whipworm journey and I can say that I’ve felt a measurable amount of relief from my worm babes. I would say around the week of the 120th day of the 1st dose I started to notice a difference.

  • I got through my last two periods with little diarrhea and zero blood.
  • Speaking of blood, I haven’t bled significantly since the middle of July! Occasionally I will have a few spots on the TP, but who cares? I know I don’t. It’s such an unreal departure from filling the bowel, I just can’t get worked up over a few spots.
  • The mornings usually are ridiculous for me. Before I even have time to open my eyes I have to sprint to the bathroom. Now, I can lay there for 30 seconds before a stomach ache develops, and depending on its severity I’ll lay there for another 30. Then I’ll have time to get up and grab a robe and slippers before I make my way down the hall (walking, not running). I’m not sure you realize how monumental this is so let me tell you: I haven’t had the time to grab slippers in 6 years. My feets are so happy.
  • I’m finding that although I still gotta-go-when-I-gotta-go, I can hold it for just a bit longer. Like if I’m in the car I might have a chance to make it down the road to the next bathroom. That’s great, man. I would take stomach aches all day long in exchange for being able to “hold it.” Thankfully in this case, I’m experiencing a little bit of having my cake poop and  eating holding it too. Not a bad way to walk around lemme tell ya.
  • I’m having to use the bathroom 3-4x a day now. Mostly in the mornings, I’ll have maybe 3 bowel movements. Usually it takes this pattern: 1st movement is formed, 2nd is loose, almost diarrhea, and 3rd is formed again. I’ve had some real good lookin’ movements in the past few weeks. Its weirdly appropriate they are called movements too, because it’s like music to my eyes. heh!
  • Prednisone you wonder? I’ve been successfully able to wean my self completely off (as of Sept. 1). So far I haven’t had any real set backs, besides feeling a few more colitis cramps throughout the day. This is also huge, since the last time I came off pred without flaring was two years ago. holla!

Oh, and my hyperthyroid condition? Peace out. I have been taking a natural supplement called Thyrotropin PMG from Standard Process since I was diagnosed a few months ago. I also increased my vegetable intake to include more that are said to decrease thyroid activity. My levels that were tested last month came back perfect. Great news. Now I know my hair loss is strictly prednisone related, so hopefully I won’t go bald any time soon.

While it seems like I have found the silver lining, the one bad thing is that I’m still fighting unnatural amounts of fatigue daily. I am exhausted all the time. If 10pm rolls around and I’m not in bed I start experiencing like, restless leg syndrome or whatever that is. It’s not pleasant. Even today, I slept for 9 hours last night and then just work up from a 3 hour nap. What is my problem? Did anyone elses’ worm fatigue last this long? Headaches, too. Lots of those happenin’. Please chime in if you have any ideas 🙂

Anyway, the other night I was talking with a friend and my husband about name meanings. “Do you think that your name shapes who you become?” There were some mixed answers and then I realized that my name, which means small bird (or heaven) in Arabic, definitely applies: “Jenna” means small bird… and I eat worms. It’s a little too perfect not to be creepy.

Episode 3

Some days, you really just need a break from being sick, y’know?

Last Thursday was that day.

Bad, bad morning.  Stomach aches, diarrhea, and blood. Had one accident and a another extremely close call. (Dunkin Donuts, your food makes people sick but I love your bathrooms and the fact that you are located on every street corner.) I don’t know about you, but every time “accidents happen” I get pretty low. I can go days feeling like I’m in labor with a 17 pound baby but when that happens, it’s a different low entirely.

So. what could remedy a spirit such as this? Sun? hmm. maybe… Sun and a lounge chair? getting warmer… Sun and a lounge chair and some more worm babies? Bingo.

and THAT’S how it’s done.*

Nothin’ like sippin’ eggs in the sun to put a smile on your face.

But seriously, Thursday happened to be dose three day and we got it done.  400 more whipworm ova are now swimmin’ around in my gastric juices. That makes 1,000 ova all together.

Two words: Game Time.

I’m so hoping these babies kick into gear soon. Since I last updated bout 2 and a half weeks ago, things have only steadily gotten worse. Here is a run-down of the days-to-sickness ratio:

Day 46 of the 1st dose (18 of the 2nd): Stools began to become less formed, and at least one bowel movement of blood. When I talk about blood, I mean that in real very terms– a few blot clots, and literally all of the toilet water is bright red. It’s Christmas far too often around here.

Days 47-50 (1st)/20-23(2nd): A good four days of one bowel movement of significant blood per day. Still going 6x a day, barely formed stools, plus some minor stomach cramps.

Day 57/29/1: This is the Thursday I’m talking about. Dose three. 400 more ova introduced.

Day 59/31/3: Horrible blood loss about 3x that day. Stomach ached all day long, general feeling of crappiness…

For the past several weeks I’ve been bleeding almost every time I go, though I’ve only recorded for you the most significant days of blood (feelin lucky yet?). I’ve been feeling tired and weak as well. Still on the 10mgs of Prednisone daily. I’ll admit, I get a little worried when I read about my fellow-wormer’s experiences. By most (good) accounts, I should be feeling better by now– especially since my helminth of choice is human whipworm. Yet, my stools are less formed than they were a month ago and I’m bleeding way more. Anyone have any insight on this?

As much as I love to panic….  it’s still too soon for that…

So anyway that was episode three down the hatch. Let’s hope that it’s not an epic fail…  like this scene  in the other Episode 3. (welcome to how my mind works…)

Welp, maybe next time I’ll have somethin’ great to write. hope. so.

See ya!

*In case you’re thinking about it, don’t ever sip your ova through a straw. Sometimes I’m guilty of staging things for dramatic effect  😉

Worm Pong?

Well…

It’s about that time.

BAM. Dose two.

Today marks week four of my helminthic experiment. As previously discussed in hardly any detail, I’m staggering my doses in an effort to keep these babies in mah belly. Cuz let’s face it. Nothing likes to hang around my hostile intestinal tract. Not even me. But the point I am trying to make is… let’s get this party started.

Could I have daintily sipped them out of my plastic cup of lukewarm water again? Sure.

Could I promise you never to use the word daintily again? Absolutely.

But then I would have to admit that A) I am no fun, and B) my vocab is far too limited to actually promise you that.

Instead, let me introduce to a new kind of drinking game:

Worm Pong.

While I’ve never actually played Beer Pong, or Beirut … whatever the cool kids are calling it these days… It occurred to me that some people are of the notion that drinking til they puke their guts out is hardcore.

I don’t think so kids. Throw back a few parasites and call me in the morning.

Steady… steady…


Nailed it.

Before we move on, please note that the fleshly looking thing on my right arm is not some weird growth. It’s just a band-aid, guys. I had some blood work done today and neglected to remove it before all the excitement.

I hope it establishes some street cred though.

“Dose Dos”

So maybe I’m a little ridiculous, but the way I see it, you can’t stop living your life… even if you’re barely “living.” I really don’t know how in the world drinking blood suckers is funny, but tonight it was hilarious. Don’t ever stop laughing. Most of all, don’t go into a new therapy hopeless, even if it is your last hope. It just. might. work. “So cheer up pal, it’s christmas.”

But… how IS it going anyway??

Glad I asked for you.

A: Pretty well. Since I last updated three weeks ago, the “brain fog” I described has, thankfully, lifted. I’m not nearly as nauseous in the mornings, though I am pretty darn tired most of the time. I’m no stranger to exhaustion so if this is just a blessing from my UC or from the worms, I can’t really tell.

Interestingly, on day 13 (the day the worms allegedly hatch and migrate to the colon) I had a bowel movement of just straight up blood. Now, I’m well acquainted with this type of .. poop?.. but since I had/have been bleeding only occasionally/minimally, that was a surprise.  It hasn’t happened again since. So we’ll chalk it up to the worms.

Cool! 🙂

Stools continue to be formed but soft, going 4-7x a day now (due to it being “that time” of the month) WHOA TMI TMI…. calm down gentleman I didn’t even say the word “period.”

err… woops.

and the urgency to get to a bathroom in .5 seconds or less is still like a 10. STILL on the 15mgs. of prednisone. This staggered dose program makes it hard to taper as soon as I’d like, but whaddah ya gonna do. So there it is. No shocking details or revelations or interesting happenings yet. It’s still early though so I’m not getting too antsy… just glad to have 400 more worm babies getting comfortable in my gut & hoping they play nice with the seniority.

**no actual worms were harmed during this game, they are far too expensive to be throwing stuff into 😉

Keepin It Real

It’s officially been a week since I threw back the creepy crawlers.

Still alive? Check. No anaphylactic shock? Check. Worms still cookin? Double check. Over all this week wasn’t bad. Here’s a run down of notable events:

Day 1- 3– Life as usual

Day 4- 8– I experienced a little extra nausea in the mornings. I say extra, because this is generally the case… just seems to be a bit amplified. However that could be because my head has been in a constant state of brain fog/headache. I’ve never been there but I’m pretty sure this is what it feels like to be hung over.

Day 6- 8– BM’s, though still formed are getting softer and less formed… going more often, maybe 6x a day now. More cramping and pain than usual and some blood, but nothing that makes me want to throw myself against a wall.

So that’s where we are. Correction, me. That’s where I am. I’ve read that day 12 or 13 is when the worms molt and migrate to the colon, so that’s when I will most likely experience the bulk of any unpleasant side effects. Good times. But seriously I can’t wait for them to jiggle down there.

In the interest of full disclosure, let me tell you what else I’m doing:

  • Probiotics. I’ve taken them non-stop for 6 years, and tried all different suppliers. Right now I’m taking Primal Defense. For all I know it works just as well as anything, and I don’t have to keep it refridgerated which just makes my life easier.
  • VitD. Gotta have this throughout the New England winter.
  • Biotin. Did I mention I’m losing all my hair? My doc told me this would help. It doesn’t stop my hair from falling out but it does help new hair grow back. It’s times like these I wish I was a boy so I could get a buzz cut and call it a day.
  • Multi-Vit. Plan and simple. Gets the job done.
  • Iron. Last time I had my iron levels checked they were not surprisingly lacking, so I’m on a supplement for the time being…
  • Biological meds. I take several homeopathic “tinctures” and pills, before and after meals. They are whats left from my trip to Switzerland where I was being treated with Biological Medicine at Paracelsus Klinic in November.
  • High-dose Vit. C infusion. I get a high dose of Vit C along with some other homeopathic meds from Paracelsus pumped in me through an IV every Friday. This helps boost the immune system, which is especially important as being on Prednisone lowers one’s immunity.
  • Prednisone. 15 mgs. boo. give me back my hair.
  • Gluten free/Dairy Free Diet. Even though gluten and dairy are found in 90% of foods, this is the easiest diet I’ve done since getting sick. I don’t even mind it. Do I miss real bread? Um, yes. a million times yes. Is eating it worth bloody diarrhea? NOPE.

Otherwise, I try to exercise 30 min. a day, 4-5x a week. My bones are crack’a’lackin so I decided to get movin before I can’t move…. and I’ve come to terms with the fact that when I squat to sit on the toilet, no matter how often I do it, it doesn’t actually count as a real squat.

So, that’s basically week one. Tonight my husband and I are planning on taking a trip to the mall & you can bet I’ll be carrying a my usual “spare pair” (that’s a spare pair of underwear, for those of you who are confused at the term because you don’t poop your pants or are not yet over 90). Needless to say, while I wait for my worm babies to do work… I’m not banking on any miracles… just keepin’ it real.