Tag Archives: Ulcerative colitis and human whipworm

Fake Out

WOW I feel negligent. Sorry for keeping you guys in the dark for 4 whole months. Not like your very existence is dependent on my blog posts and bowel situation… but y’know.

Ready for the final chapters?  I say “chapters,” because not only is this post 4 months in the making but it’s going to take about 4 months to read. Procrastination is a friend to no one. My apologies.

And I say “final” because, here it is–  I am quitting the worms. QUITTING with a big, fat, capital Q.


Can I tell you something you already know?  Life is crazy/weird/interesting/unpredictable. Especially when you’re living with a chronic illness and trying to put your health back together piece by piece.

Chaper one: November

November came and went with no big issues or complications. False. November was in fact, insane. We had been hearing some kind of animal in the attic of our house. In reality it was probably just Stewart Little, but it sounded like an entire family of raccoons clawing their way through the ceiling. Not okay. This might explain my hysteria. Who says the media is desensitizing again?

So the week before thanksgiving my husband went to check out the attic monster. What he found was way worse. A tiny monster, if you will: mold, mold, and more mold. billions of black mold spores sheeting the entirety of the attic.

In case you’re not up on your mycology, black mold is extremely toxic, especially to those with a compromised immune system (i.e., me). So you can imagine my partial dismay upon it’s discovery. Partial only because, well, we found it, so that’s a plus. Everything else about it is a complete minus. We peaced outta there that night and decided to stay with my parents until the problem could be taken care of. How in the heck Stewart little and/or the raccoon family didn’t immediately die up there upon entry, I’ll never know.

I went to see a new doctor the next day (WHOM I LOVE) and I brought up the mold situation. She said in no uncertain terms that we were never to live in that house again, even if the mold was eradicated. and suddenly we are houseless! Keep the good news a’comin.

Fake out #1: Stupid mold! I had been battling with candida for months wondering why I couldn’t get rid of it. Turns out, it’s hard to treat a yeast infection when mold is constantly feeding it. Real hard. Nay, impossible.

More on the new doc (WHOM I LOVE): I had an hour and a half discussion with her about all the diets, supplements, therapies, clinics, worms(!), and concoctions I’ve tried over the years. I was basically at my wits end not knowing where to go from where I was. I even suggested doing a fecal transplant using my hubby’s poop (he has the greatest poop imaginable… like national geographic pretty). Yeah you heard that right, get your jaw off the floor! poop poop, wormie worm worms, poop diarrhea. this blog is graphic.

Anyway she has had patients with UC that have become completely healed on her protocol. I’ve heard this about 8 times before from other docs, but her method was simple yet unlike any other. She does a stool sample, checks for parasites, overload of bad bacterial, checks the level of good bacteria, checks for candida, etc. then she treats, tests again, treats, tests again… and then focuses on healing the gut. Step one? Walked outta there with a poop kit, blood test form, and a job offer. Really cool combo.

Chapter Two: December

After a few weeks of being exiled from mold kingdom, I went back to the gyno. Yeast infection- POOF! gone. come back never. That was good news. Diet, drugs, supplements, and clean air did me good this time.

Then my test results came back. The blood test was super. Best my blood has looked in a while (thank you, Standard Process supplements). Iron was great, vit. D level was near perfect, and my liver weathered the diflucan storm with ease. Nothing however, indicated that I had a parasitic infection ( no worms? )… Poop test came in as well.  My colon was clean of candida, my levels of “good” bacteria were satisfactory (7 years of taking probiotic supps will do that to a girl) and, brace yourselves.

Fake Out #2: NO worms. No eggs, no bodies. worm babies ain’t in there.

So I’m annoyed. There are so many variables to think about. Consider the possible scenarios:

  • The worms were DOA (dead on arrival). It seems suspicious to me that I took three doses of worms, months apart, WITH prednisone, and none of them stuck.
  • Of course there is the possibility that my body just didn’t let them stick. In which case, I would have given this therapy a fair chance and there would be no question in my mind as to whether or not to repeat the process.
  • The worms stuck, but were killed due to something on the huge list of things you cannot ingest whilest a host.

I think it was option one. I really do. But at this point it doesn’t matter, because by the time I received the results, I had planned to kill the worms anyway since they clearly were not helping.

But WHY did I think I had the “worm flu?” why was I suffering from all the typical symptoms? Brain fog, stomach aches, tired, fever, etc.

The test also showed that I had an overgrowth of an opportunistic bacteria called Citrobactor sp. Normal levels of this bacteria are a 1 or less, mine was a 7. Go big or go home. Turns out a nasty overgrowth of citrobactor mimics the symptoms of Candida. Candida symptoms can be mistaken for worm flu. Therefore, citrobactor can be mistaken for worm flu. The symptoms of toxic mold exposure also overlap with worm flu.

Candida=citrobactor=mold=worm flu.

mind blown.

Fake Out #3: Did I just get tripple deked? Yeah, that was a Mighty Ducks reference and yeah, that just happened. I know I had candida and Citro and mold  for sure, but I don’t know about worm flu… either way can you guess how marvelous I was feeling for all those months?

So it was not just the placebo effect. I did actually feel like crap. Just… not for the reason I wanted to feel like crap.

But if we are being serious is there ever a reason you want to feel like crap, other than child birth where a baby is your reward? I think not.

Then there was that post I made about some kind of perceived progress. Thinking back, the two-ish weeks of “feeling better” that I was referencing turned out to be the same time frame that I was in Florida. AKA NOT in my house of mold.

Are you enjoying this puzzle as much as me?

Tis the season to be jolly! fa lalalala, la la, gah gah.

I started on an antibiotic (gasp! forbidden! I know, but it was the only way to knock out the cipro bug) and was on that for 3 weeks. Know what? Stools became formed, less blood, less stomach cramping. Never thought an antibiotic could be so stomach friendly. I still took probiotics to replace the good bacteria. No need to get completely crazy here.

Chapter Three: January

Finished the antibiotic, re-tested, and waited for the results.

Chapter Four: February

Results are in! Citro is DEAD and gone. love it. However, I experienced some set backs. My poop is almost always diarrhea now, and there’s more blood and mucus happening. Urgency is, well, urgent.

Also, I turned 25. gross. who does that?

Chapter Five: March (so far)

Marchity marchmarch. Went to my favorite new doc who I have referred 6 people to so far. Did I mention I love her? Since the bugs are gone and there is nothing antagonizing the intestine, it is time to heal the gut.

“But you’ve been trying to do that for 7 years!”

I knooooow. But who knows how long I’ve had huge bacterial over-growths? Now that those things are out of the way, I’m in a much better position to heal. after my gut is healed and able to absorb nutrition, I can focus of piling in the good stuff. Like, biotin, for my ever thinning hair.

Here is the protocol for said gut healing:

Intestinal Repair Caps— chalk full of all kinds of butt-kickin’ healin’ stuffs.

InflammaCORE— basically the caps, but in powder form to make a shake. Also chalk full of gut goodies. and consequently it tastes a little like chalk (the cherry kind).

5-HTP spray— this is a neurotransmitter spray that is taken sublingually  (under the tongue). It is a precursor to serotonin. If you have a gut problem, you almost for sure don’t make enough serotonin, because serotonin is made in the gut. Not enough serotonin= angry gut, angry gut= not enough serotonin… and the ensuing chaos is endless. No one has EVER mentioned this to me before and I’ve been in this business a heck of a long time. Finally, some new stuff on the table. Look up the gut/brain/serotonin connection if you’re curious. Not enough serotonin can also cause things like anxiety and depression.

So that’s that.

They say March is “in like a lion and out like a lamb.” I’d like to transpose that saying to reference my colon.  Please be so. Amen and Amen.

Since this is a worm blog, I suppose I should talk more about the worms and detail my choices regarding the therapy. I think I’ll give that subject it’s very own post, so it doesn’t sit here at the bottom of this one…. as many have fallen ill, had grandchildren, or at the very least, dozed off during the time it took to read this gigantic stream of consciousness manuscript.



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.

Whipworm in mah belly, belly

Dear friends, family, and strangers who read about my bowel situation–

I’ve been holding 0ff on updating in hopes that in my next post I could use an obnoxious amount of exclamation points and maybe even an offensive amount of capital letters to describe how [AWESOME] I’m doing!!!!!!!!!!!

Buuuut. alas, the struggle continues. Things are still where they were in June, for the most part. Let me do my “day to symptoms ratio” layout and then we can discuss bigger and better things:

Day 67/39/11: One week into my third dose. Ironically the second and third doses seemed to make me more tired and dragging than the initial dose… Could be because they were larger by 200 eggs, but who knows. I had one or two episodes of straight diarrhea in the week that followed (mostly my stools are loosely formed), some blood but a definite decrease from the weeks before. I love seeing no blood. Naturally I thought the worms might be kickin’ in.

Days 74/46/18: Say hello to the month of July! oh, and menstrual week. Sorry to go here but I have to for full disclosure, you understand. Basically, I want to go into a coma for a week out of every month. Nay, two. Two weeks. I have two bad UC weeks when Aunt Flow comes ’round, complete with days of diarrhea cramping and blood loss. and then it takes me a weeks to recover, then I’m back where I started. See dialog below:

Me: “Another month down, hopefully next month won’t set me back.”


All mah Ladies– how do you deal with this and UC? Aside from a birth control pill which I’ve tried… and Red Raspberry…

So. Not a “good week.”

Day 81/53/25: This week the blood has decreased again but my stools are looser. yay diarrhea.

Overall: Going 5-6X a day, though sometimes I’ll get lucky and only go about 3. Urgency is still a huge factor, so I carry my paranoia around with me like it’s worth a million dollars. Um. Still on 10mgs. of Prednisone. I’m thinking about tapering it regardless of my symptoms because I’ve been on it for 6 months now and I can’t keep doing this. Plus, the worms are past their 2 week buffer time of needing an immune suppressant. Decisions.

Remission is generally felt around week 14, which is next week! AH. The thing is, if my first dose of worm babies didn’t take, there is a chance my second dose did, so I have to wait another 4 weeks to see if I experience any relief from those little guys.

Emotion check: I haven’t lost faith in HT. I have no doubt it has helped many people get their lives bank and place them on a truly different level of health– and I’m so happy for them. I hope to join the ranks of success stories, but I understand that UC is an extremely complex disease and therefore not everyone can or will, and I have to be okay with that. Still, it’s early. Stay tuned.

and now for bigger and better things as promised.

So my husband has this sweet app on his ipod.  If you sing/talk into the speaker and it will “songify” your message (yeah, so I might still be in 6th grade, so what if I think it’s cool). Tonight he said, “hey sing something into this.”

I sang, he played it back, and it was downright amazing. It’s a little something I call “Whipworm In Ma Belly.”  (<-click for song)


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  😉

Helminths Don’t Have Legs

I guess I’ll be the fourth or fifth to say it say it… this post is long overdue. It may just be because I’ve got a lot going on, but it’s more likely because I’ve spent the last several days getting over pretty traumatic happening involving my worm babes…. who aren’t so little anymore.

Let’s just jump into the story, shall we?  An IBD blog is no place for suspense.

Scene: morning dash to the bathroom. I get in there just in time. Everything seemed to be per usual so I get up to check the poo. I’ve been checkin’ poo for years now… safe to say its a solidly formed habit (like I someday hope my poop to be.) Kind, color, blood, etc. ya with me? #everydaylife.

Anyway, I look down only to see that my “poop” is moving. Squirming, actually. It takes me only a second to realize that THESE ARE MY WORMS. So I’m immediately flooded with every single emotion I’ve ever experienced at once, when I realize that these things have gotten out of the toilet and were now in a pile on my bathroom floor. Time to panic. I start picking them up with my hands (what’s a girl to do?) and throwing them back in the toilet. But as I’m doing this, they start to burrow into my hands and arms like some sort of parasite. What? I could barely rip them off me fast enough and let me tell you, these guys pack a serious punch. I felt like I was in a more interesting Twilight movie.

So I’m standing there, tears rolling down my face, not because I have several worms drawing blood from my limbs but because I’m thinking, “NOOO! Did I lose them all? Has this EVER happened before? What do I do? WHAT do I do? Am I seriously staring at a few thousand dollars in my toilet right now?? JERKS, GET BACK IN!”  Standard reaction, really.

Then I woke up.

I’m sure you’re as thankful as I am that that was only a  freakish dream and not a real-life incident. It was really quite as horrifying as dreams come. Needless to say I think I’m subconsciously pretty worried about these worms escaping or just plain not working. Does anyone else have worm dreams? My husband had a similar experience (albeit real life), when he saw some worm like thing crawling on the bathroom floor a few weeks back. He came to be and said, “I thought one of your worms had crawled out of you and was on the bathroom floor. I was really freaked out until I remembered… helminths don’t have legs.”

This is a weird therapy. We’re trying our best to develop coping mechanisms.

In other news, remember that little comment in my last post about street cred and a band-aid on my arm from a recent blood test? Well, test came back. My doctor called and let me know that my iron great, CRB is great, inflammation is not bad (rarely is, even in a flare. so confusing.) Then her voice got a little panicky.  “I also tested your thyroid levels.” Ohhhkayy.

Turns out I now have HyperthyroidismAbout 3 seconds after she said that word the junk I learned in my college Anatomy & Physiology class came rushing back to me…. No “known” cure, no “know” cause, autoimmune disease, treatment options are drugs or surgery.

Crap. Not this again.

This on top of my well established UC and Raynaud’s disease… it’s a good thing I’m already married.

I have no idea when the onset of this was. Could it be a result of the worms? While I suppose it is technically possible, I kind of doubt it. I’ve been nauseous for months, my hair has been falling out, hormones have been going crazy for at least 3 months and my throat is killing me. We’re talkin serious pain on a daily basis. I had a theory that the sore throat could be caused by cell wall deficient bacteria, since I had Strep an unethical amount of times as a kid. I had my doc check me for strep antibodies. Nope. Strep free. But I do have what I now think is an enlarged thyroid causing me pain.

The bad part (I mean the other bad part) about this is, since this is a recent diagnosis, I really can’t say what can be attributed to the worms, to colitis, or to hyperthyroid. All I can do it record what happens and guess. I suppose that’s all we can really do, it’s just slightly more complicated with me.

She told me to call and endocrinologist ASAP and then ran down the option list for treatments. A) take meds forever B) kill your thyroid with Iodine or C) surgically remove the gland.

Sounds familiar don’t it?

I gotta say I was really disappointed with her approach to this. I’ve been going to her because she favors a holistic approach, so the way she threw out a typical overly alarming MD response kinda threw me. I can’t figure these people out.

Anyway, here’s the plan. My levels are not life-threatening yet (had to do my own research to figure that one out), so I hope to handle this the same way I’ve been handling my colitis; diet, exercise, supplements. So much research to do…. This is just one more thing to figure out. If you can offer any advice as to how to treat this naturally, I’d really appreciate it. 🙂

Aside from that, I’ve experienced no relief from the worms yet.  After the second dose I was very tired, very nauseous, and the brain fog and headache came back. On day 6 & 7 of the 2nd dose (day 35, 36 of the 1st dose) I experienced several bowel movements of blood. No severe stomach pain but this is unusual for me being on the prednisone (now at 10mgs).

Today, which is day 18 of the 2nd dose (day 46 of the 1st dose) I had another bowel movement of blood, and some diarrhea. The only change I’ve noticed is that there is more mucus in the stool and I have traces of blood more frequently… well, every day in the last week. Of course, I’m getting over the flu so that could have something to do with it as well.

So, that’s that. About one more week to go before I swallow the last dose of the season. Excited? I know I am!

But more importantly… what have we learned here? Don’t get hyperthyroidism. and if you happen to see a wormish thing crawling around on your bathroom floor, chances are it’s not an escapee. after all, helminths dont have legs… just really, really sharp teeth.

Sweet Dreams!!

Worm Pong?


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 😉