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
cakepoop and eatingholding 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.