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.

-U-I-T-T-I-N-G.

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.

overandout.

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 🙂

Some Sick Coincidence

“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.” –September 3 Update

So uhh… **looks down at feet and shuffles**  slightly embarrassing. What day was Labor Day? September 5th? …Yep. That’s the day everything started to go haywire again. TWO days after I wrote a spectacular update– things went south, FAST.  I had to use the bathroom 4 times that morning and then, out of nowhere that night, BAM. DR. D came back to town. Sent me straight running to the bathroom less than ten feet away and I almost didn’t make it. If my life were a script, it would read something like this:

Me: “Yay! Guys! Guys! I’m doing better! Worms must be working, I can see my sanity on the horizon!”

My body: “EAT THIS, SUCKER”

and then it smashed some serious humble pie in my face.

It took me only moments to realize that I had to, once again, work my way through the Five Stages of Grief.

Stage One: Denial; demonstrated by saying to myself, “Oh, yikes, well that was a bad day. Tomorrow will be better.” Tomorrow wasn’t better. In fact, tomorrow was worse. and the next day, and the next day….  which brought about Stage Two: Anger: “NO. 😦 why? cry cry cry, I hate this, my life is ruined… again, etc.etc.”

So then I thought it best to Bargain: (Stage Three). How does one bargain with their own body? I don’t know, but I went on a vegetable juice fast for a week to give my colon a break plus lots of nutrients. And I’m not talking the overpriced pasteurized bottled carrot juice at the store, I’m talking organic veggies that got muscled through a juicer. No fruit juices, as they contain too much sugar for a bowel in a state of disbiosis.

And wouldn’t ya know? I got worse.

meanwhile, I’ve been fighting reoccurring yeast infections, which have been taking place since the end of July. Never before have I had this problem but hey, why not add it to the list of crap I’m working though.

Cue Stage 4: Depression.

Of course I try to cure myself of this yeast problem with natural remedies because I don’t want to take another jaunt down pharma alley. But eventually I caved and took drugs. The natural methods AND the drugs failed because the infection is  just too strong. While researching I realized that not only do I have a localized yeast infection, but I have a yeast overgrowth surging through my entire body, effecting a good number of my organs.

Maybe you’ve heard of it? Candida albicans. It’s a fungus that is normally found in the bowel and elsewhere in the body, and is fine when countered by good bacteria. However. When you take prednisone (check), birth control pills (check) are female (double check), and have a compromised immune system + leaky gut, you’re at high risk for this fungi to multiply out of control, and it can seriously mess with your system.

So out of control. I basically have all the symptoms listed on any given “candida survey.” I had not realized this before because a) I never had a yeast infection before this and b) all the symptoms can be attributed to colitis or worms or to prednisone. For example: exhaustion, achy muscles, brain fog, frequent headaches, constant sore throat, thyroid disruption, craving sweets/carbs, diarrhea, bloating, PMS, mood swings, nausea, hair loss, night sweats, etc. GAHH! why didn’t someone tell me!  I know I’ve had this problem for probably over a year, I just attributed those things to, well, other things.

That’s what happens when you overlap sicknesses, okay? So don’t.

I have since read several huge books, and quite a few articles on the topic and am trying to tackle the problem with a two week stint of Diflucan and by going on a very strict Candida diet, which outlaws: fruit, juice, sugar, sweeteners, dairy, all grains, honey, tea, herbs, tomato, carrots, peppers, eggplant… basically the only things I can eat right now are green vegetables and meat. So, SCD to the extreme. I am following Dr. Z’s protocol. He is a big supporter of the Sanum homeopathic products I use so I assume he’s cut from good cloth. alsooo I’m taking supplements like cray-cray in hopes that I can kill this bad boy off.

This is my third week with absolutely no sugar or carbs and I would absolutely kill for a raisin. I’m not any better, though. I’m back to stomach aches all day long, diarrhea, and bright red toilet water. Three weeks to go and I will try to slowly resume normal eating habits. (heh. what are normal eating habits again?)

What part do the worms play in this? I think the worms may have weakened my immune system just enough to send the yeast problem right over the edge into plain sight. If this really is a candida problem (and I’m quite sure of it), then I don’t expect the worms to stand up to that. I’m going to ride this out and see, when the candida decreases significantly, if the worms help me like the little champions I paid for them to be. Which brings me to…

Stage 5: Acceptance. Yeah. Not quite there yet.

One more thing. There is this book on cancer that I’ve been reading and it’s premise is that cancer is caused by a vitamin B17 deficiency. It has been proven that B17 can heal/prevent cancer, except treatments with this vitamin are illegal in the great US of A because our government is run by money-grubbing criminals. Never fear, B17 is found in apricot seeds and apple seeds and some others. While reading more on the subject I ran across a forum where a lady nonchalantly said she always ate apple seeds to put her colitis into remission. WHAT? okay. done. sold.

So now I am eating apple seeds, one seed per 10lbs of body weight per day. (make sure you eat the right amount, they are posionious in large doses) (I mean, don’t be scared or anything, just don’t treat them like movie popcorn.)
Worms, apple seeds, what WILL she think of next?!!?!?

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.”

My hormones: “BWAHAHAHA MUAHAHAHAHA LET’S WREAK HAVOC!”

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)

Enjoy.

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 Hyperthyroidism.  About 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?

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.

Worm Babies

Last night I had a completely adorable four year old girl ask me if I had a baby in my belly. (fat joke?) I had to think about that one for a second. I may not have a baby in my belly, but I have about 200 whipworm eggs ready to hatch, migrate to my colon, and dig in.

Wait… what?!

Listen, we all have our dirty little secrets. Mine just happen to be the parasitic worms chillin in my guts. Last Thursday (April 21st), I swallowed my first dose of human whipworm in an effort to end my 6 year battle with severe Ulcerative Colitis. A quick read of my “About” section will tell you how I was introduced to this treatment, and why I chose it. But since some of us don’t have that kinda time, let’s just jump right in, shall we?

Lemme hit you’wit some baselines.

• I’m 24, female, and on the lower end of a “healthy” weight.
• I’ve been through the absolute worst with his disease. When your GI looks at you and says, “I don’t want you to go home and cry or anything, but you could die at any minute,” that’s a problem. and he’s maybe not a nice man. Regardless, I was able to pull myself back from a 30lbs weight loss (down to 90lbs), what could have been heart-stopping anemia, and a grueling 15- 20x a day sprint to the bathroom by doing alternative therapies, emotional techniques, lots of prayer, and hard-core diets. Oh, and prednisone.
• Ah yes, prednisone. The drug we love to loathe. Pred is the only thing that can calm a flare, although even that is getting increasingly less effective. I’ve been on it for more time then I’ve been off it, and my body is already starting to show the long term effects of it. Blurred vision, hair loss, achy, cracking bones, shooting bone pain… I’ll be in a wheel chair very soon if I don’t get off this crap. or blinded by cortisone induced glaucoma. and THEN how would I get to the bathroom???
• Right now I’m in a decent place. By decent place,  mean mostly formed BM’s, 3-5x a day, little or no blood, not very much pain but the urgency is still a huge factor. Again, this is all thanks to the prednisone. I’ve been on it for about two months to stop a flare I had in Feb/March. Now that I’ve begun the worms, I’ll stay on a dose of about 15mgs for a few weeks to counter any side effects while the little guys settle in.

And since I always loved show and tell…..

“These are my worm babies.”

Arranging to get them shipped from the AIT to my house was a little tough. Huge thanks to my Dad’s friend Bob for helping me bypass government red tape.

I’m taking three doses every 4 weeks. D1= 200, D2&3= 400, which is 1,000 altogether. There has been some evience that people with severe colitis respond better to doses rather than the typical 1,000-at-once. We’ll see.

Just the thought of being “normal” again is staggering. What the heck would I even do if I knew I wasn’t leashed to the toilet? Probably not make this creepy, Im-about-to-eat-parasites face.

The thought of just shooting them down straight outta the vile as soon as I ripped the package apart was pretty tempting, but since my husband filmed this monumental event I salvaged the little bit of propperness (not a word) I have left and dumped it into a cup of room-temp water.

Tasteless, painless, clean. This beats a colonic every time.

worm babies, do your thing.