Tag Archives: Crohn’s Disease

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  😉

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.