From Glad to Sad to Mad and Back Again

I'm glad to report I had a terrific colonoscopy yesterday!  YAY!  No, seriously, I was really happy to participate in this little procedure since it's the only way to really know what's going on in there.  As with most things, there's good news and bad.  Good news: the inflammation is limited to the last 20 cm (about 8 inches) of my digestive tract.  Bad news: that last 20 cm looks pretty bad.  Ulceration, bleeding, mucus--it's pretty icky.  Good news: increasing the meds that have a systemic effect (i.e. prednisone) probably isn't warranted.  Bad news: Making enemas and suppositories a regular part of my regimen probably IS warranted.  Good news: At least there's something different I can try.  Bad news: I've actually used these treatments before, to little effect.  All that, plus, no sign of the worms on that colonoscopy.  That was a big disappointment, even though I should have already known, since my stool sample tested negative.

I wore my "I (heart) Nancy's :" t-shirt to the endoscopy clinic and was really pleased that all the staff appreciated the joke. A few people in the waiting room glanced at me like I'm nuts, but hey, I probably am a little nuts, so that's okay.

As an aside to any readers who are "of age" for colon cancer screening: I've done it four times now, and I'm here to tell you this procedure is NO BIG DEAL and is a much better way to go than to put yourself at risk for colon cancer.  No, it's not pleasant.  Sure, the prep sucks.  Yes, it's a little difficult to willingly put yourself in such a vulnerable position.  But the drugs are pretty good, and seriously, it's so much better than even the risk of colon cancer.  So go get yerself checked, people.  

I spent a little time this a.m. looking back over my posts on this blog, and I am just completely overwhelmed with sadness.  What a waste.  All that time, I was so hopeful, cracking jokes about "the Union," talking about how I had to step it up in my eating habits to help those worms along, etc. All that, and come to find out, nearly 6 months later, those little guys were never there in the first place.  After spending about 9 months setting up this treatment, scheduling travel to one foreign country, cancelling that, re-scheduling on short notice to another foreign country, feeling like crap this whole time....

Mother-f***er.   Arrrrgh.  (Oops.  Looks like I just slipped from "sad" to "mad.")  OK.  Gotta come to terms with it.  "Mad" is not a good place for me to be.  Sigh.  Alright.  Take a deep breath.  Stay focused on "what now?" You can do this. 

I'm not done with this treatment, even though I don't know why it didn't work out the first time, and even though I'm having a heck of a time getting the next treatment set up.  I don't think it's the worms' fault this hasn't worked out so far; I think that responsibility lies strictly in the realm of us humans.  So I'm going to keep forging ahead, and hoping that in ANOTHER 6 months, I have better news to report.  (god, seriously? ANOTHER 6 months?)

Ok. Better to just admit it.  This is a pretty "down" day and I'm not going to be able to talk myself out of feeling really bummed.  Even though I'm wearing the t-shirt, truth is, I don't really love my colon so much just now.  I'll just check in again when I'm in a better place...

Taking Steps Against IBD

Did you know that there's a non-profit organization that has had a hand in developing every major advance in IBD treatment in the last 40 years?  Did you know that this same organization sends hundreds of kids with IBD to camp every summer so they will have a chance to feel like a "normal" kid while building a valuable network of other kids who know what they go through every day?  Did you know they provide tons of valuable info to the 38,000 Americans who are newly-diagnosed each year?  Did you know you can support this organization by making a donation to support their Take Steps walk fund-raising event?

It's all true!

You can make a donation to CCFA by going to my very own TEAM NANCY website.  Just click here!


I'm not feeling up to walking myself this year, but that just makes the cause all the more meaningful to me.  I hope you'll join me in taking a few virtual steps toward a future free from digestive diseases by making a donation.



On behalf of over 1.4 million Americans with IBD, thanks for your support!!

Oh no! I'm Negative!

For those who have been so kind as to say that they appreciate the way I'm always so upbeat and positive about my whole experience with IBD, I've got news.  It has now been medically proven that in fact, I am negative!

A few weeks ago I contacted the good folks at AIT to let them know I wasn't seeing any effects from my wormy little pals yet.  I knew that it was possibly too early to tell, but I wanted to just touch base in case there was reason to be concerned.  I didn't want to wait several more months and then have them say, "Why didn't you tell us sooner that nothing was happening?"

Until just recently, I've been okay with the idea that, Hey, maybe this is just going to take a little longer, or you know, I had a pretty good last couple of days--maybe those little worms are getting started.  But within the last three weeks or so, I've just felt like those rose-colored glasses might be getting a little bit tight, you know?

Still, I was a little surprised when Jasper (my worm wrangler) didn't just tell me, "It's okay.  You just need to hang in there maybe 4 to 6 more weeks.  Let's keep an eye on things."  Instead, he wanted me to send a stool sample right away so they could test for presence of whipworms.  (Very funny story about filling out the customs form for that very special package.  I'll save that for another time.) Plus, he wanted me to start making plans right away to receive at least 2 more doses of helminth ova.  That means I would need to schedule foreign travel--at least 2 more trips.

My initial reaction was, "Whoa!  Slow down there, fella!"  Sure, I will ship you a vial of my poop so we can see what's what, and I'll start kinda looking around to think about where and when I could go to get more worms.  But I also am due for a colonoscopy soon, so maybe we'll wait and see what visual confirmation we have of what exactly is going on before I make any further plans.

And then, the phone call came.

It was Monday afternoon when Jasper called and said simply, "You're negative."  Um.  What?  "Your stool sample is testing negative for whipworm.  They aren't in there.  Sorry."  Sure, this is exactly why we did the test, to see if this is the situation, but still, when the truth came out, I was kinda dumbfounded.  Together, Jasper and I did some quick math to see exactly how long it was since I had ingested the ova.  118 days.  Apparently, the "textbook" timeline for when you should start to see evidence of the worms in your stool is 75 days, but Jasper says that for him and for others, 115 days was the magic number, so I'm right on the cusp there.  We'll do another stool sample this week to see, but I gotta admit, it looks pretty grim.

So what explains why none of those little guys survived?  No idea.  Were they not viable to begin with?  Did I receive a dose of some inert liquid instead of the powerful 1250 TT ova I was supposed to get?  I don't know, but I can tell you that since my tongue and the back of my throat tingled for a while after taking them, I suspect that little vial wasn't full of just water.  Did my immune system kick into high gear and push those fellas out?  I don't really think my body rejected them because other people to whom that happens report a violent case of diarrhea, fever, etc. soon after inoculation, symptoms I never had.

I don't have an answer for what happened, but kinda like when I got my UC diagnosis, I don't really care how or why--I am more focused on "now what?"  (As an aside, it makes me a little bit nuts when folks with IBD obsess about how they got this disease.  Was it something in their diet?  Is it genetic?  Who cares?  It's not like if you knew exactly where it came from you could reverse course.  You've got it now, you're going to have it forever, so get over what happened and start looking at what you're going to do now.  But that's just me....)

As for me, the answer to "now what?" is that I am going to step up the plan to get more worms, and toute de suite.  I started down this path over a year ago now, and can't believe I have nothing to show for it yet, except a big hole in my savings account and a few stamps in my passport.  But I am definitely not done with this treatment yet.  I could handle the news (I think) that, "Hey, they're in there, doing their happy little wiggly dance, but it just looks like they aren't going to help you.  Sorry!"  But I cannot abide, "Well, they just didn't survive.  Oops." 

Someone asked me a few weeks ago how I'm doing and I spelled all this out for them and they said, "Yeah, well you just want to see this through and then you can move on to the next thing if you need to."  But you know what?  There IS no "next thing" for me.  As far as I can see, what's left for me are two options that really aren't on the table: surgical removal of my colon, and massive dietary overhaul.  I've looked into both, and I am not a very good candidate for surgery, and the kind of diet we're talking about would be so soul crushing, that really, my life would have to actually be on the line, in a very real and immediate way, for me to take that on.

So that's where I'm at right now.  I'm negative, but trying to remain positive.  Staying hopeful that in the next few weeks, I will ingest some more wigglers and be on my way to health and happiness.  Sure, I'm disappointed that I'm not already there, but over the 14 years I've been dealing with this disease, I've been up and down so many times, I know the drill.  You just keep on keepin' on.

I'm not alone!

Just wanted to share with y'all a few things out there on the interwebs that prove that I am not the only one suffering from UC.  Sometimes that's hard to remember, when you've got a disease that is played out in the most private of places, the bathroom.

First, please check out an article called "When Nature Calls" from Salon.com wherein a woman shares her experience of being diagnosed with UC at age 26 (And of pooping in her pants.  A lot.  Sound familiar?)  After you read it, I encourage you to take a minute to peruse some of the reader comments.  Muy enlightening, I must say.

Also, I want to share a link to my friend Mel's "MeMercial," a very brief video from her production company, Denver Mind Media, about her husband's fight against Crohn's.  Although the images she uses are so powerful, what strikes me most is what she left out: the multiple hospital visits, the mounting medical bills, the overwhelming concern and helplessness about his endless battle....But those are just my reactions.  Here's Mel's vision of what Crohn's looks like: http://youtu.be/w9zWNEe0Buo 

Yes, it's Take Steps walk season at the ol' CCFA, and y'all know I am a big believer in this event's mission to raise money for research, support services, and education about IBD.  Most of all, it's an important way for all 1.4 million people in the U.S. with Crohn's and colitis to do something POSITIVE about having these dumb diseases.  Talk about not being alone: just in Denver, as many as 2,000 people will show up at the walk.  So please, please, please do what you can to support this very determined tribe.  Go to cctakesteps.org now to find your local event and donate.

One more note about this thought that "I am not alone": one of the blessings of my journey with UC (yes, there have been a few!) has been becoming more fully aware that while I have this burden, my friends and family all struggle with their own problems, the guy next to me at the red light has issues, that little old lady at the grocery store is dealing with something, and on and on and on.  So when I say I'm not alone, what I mean is I am grateful for the knowledge that this is just the human condition I'm dealing with.  My personal "human condition" is not great, but how comforting to know we're all in it together, no?  (At least, that's my take on it today.  But woe be to the first person to cut me off in the parking lot! My "kum-bay-ya" attitude could turn on a dime!)

Word for the Day: Tenesmus

Today, ladies and gents, I thought we'd expand your vocabulary by introducing you to a word I'd never heard before developing ulcerative colitis: tenesmus.  No, I'm not talking about that disease you can get if you step on a rusty nail (that's tetanus), nor am I referring to something related to my favorite racquet sport, tennis.  Tenesmus is defined by Merriam-Webster as "a distressing but ineffectual urge to evacuate the rectum or bladder."

That's all well and good, but I can tell you, friends, that when the rubber hits the road, the neutral language of a dictionary definition cannot begin to explain the frustration caused by the condition known as tenesmus.  All y'all who have healthy poopers take something very important for granted: the ability to judge when you need to have a bowel movement.  I bet it has never even occurred to you to second-guess your body when it tells you, "Hey!  I think I need to poop.  And it would be a good idea if you could get to a bathroom so I can do that soon.  Thanks!" 

But the most persistent and distressing effect of having an inflammatory bowel disease is the inability to trust your body's impulses on this front.  On one hand, I can be cruising along, having a terrific day, when all of a sudden (and I do mean "sudden") I feel a little cramp in my belly that tells me it's time to get to a bathroom, and I mean NOW.  Depending on the situation, I may have 15 seconds to get to the bathroom, or, if I'm really lucky, I can wait 15 minutes.  For grins, how about the next time you become even remotely aware that you have to go to the bathroom, you set the timer on your watch to see how long it takes to become an urgent need.  I will bet you real money that it's A LOT longer than 15 minutes.  In fact, I bet it takes longer than 15 minutes for you to even become aware of the need in the first place.  But I digress....

After dealing with this urgency symptom for a while, I started to notice something a little different going on: I would feel the urge, race to the bathroom, and then.....nothing.  Or maybe pass just a little bit of stool and some gas.  But not anything close to the poop-storm that it felt like was brewing, due to the urgency feeling.  So I'd sit on the toilet, straining, for a few minutes, and still....nothing.  Afraid to leave the bathroom, due to past experiences with walking away from the toilet only to run right back again, I would stay in the bathroom for extended periods but never seem to "produce."

Finally, I asked my doc, "What gives?"  "Tenesmus," he said.  "What we have here is a rectum that can no longer properly detect the urgency of need of removal.  The inflammation has become so intractable that when any bit of matter reaches the rectum, it sends a signal that the load is too much and must be evacuated immediately.  It's called tenesmus."

Great.  So it has a name, but what do we do about it?  "Not much you can do about it, except get the inflammation down in general and hope that the rectum recovers once you achieve remission."  Because the rectum is pretty much the last stop of your digestive tract, sometimes you can treat it with topical medications to help with the inflammation.  This is where you get into the territory of the most glamorous of UC treatments, the enema and the suppository.  As you can imagine, it can be much more effective to treat this area via the anus rather than sending an oral medication all the way through your digestive tract and hope that it is still viable once it reaches the end of the line.

You may have already noticed, intrepid reader, that one of the most frustrating things about having UC is that my symptoms are a moving target.  No two days are ever alike, and things always seem to be in a state of flux, depending on who knows what variables.  So, fortunately, I don't always have to deal with tenesmus, but it's what I've got going on in spades right now.  I am spending a lot of quality time with my toilet, kinda just waiting for things to happen.  It's not like constipation, because I don't feel any kind of bloating or discomfort in my belly, just this kind of spastic feeling in my rectum. 

But the other thing is, I am spending even more time trying to second guess that urgency feeling.  Because it happens so frequently, and so often going to the bathroom is so ineffective, I have taken to trying to judge whether my rectum is just freaking out or whether this time is the real deal.  And as you can imagine, I don't always guess correctly.  You know what this is like, if you can remember back to when you were very young and trying to learn how urgent nature's call really was.  As a 4 or 5 year old, everyone understands if you haven't quite mastered this skill and end up soiling your underroos at pre-school.  Once you're 8 or 9, having an accident while sleeping over at a friend's house could ruin your social life for years.  And here I am, staring down my 42nd birthday, and having the same issues. God, I hate this disease.

So there you go, gang.  Tenesmus.  Now that you know it, try to using it in a sentence just once today.  Something like, "Thank God I've never known what it is to have chronic tenesmus," would be a good start.

Food Fight!

"Eating good for my belly is crushing my soul."--Me, as I stared down my third bowl of quinoa gruel in as many days.

Ahoy, mateys!  I can't believe it's been a month since I last posted, but I haven't had much news to report.  That is, unless you count numerous episodes of public pooping, overnight cramping, or rectal bleeding as news. 

You do count all that as news?  Oh.  In that case, I'd better fill you in....

Once I came back from my trip to the mountains with my friends, I had a little "come to Jesus" talk with myself about getting on track and doing my part to help my little "passengers" achieve their mission.  To me, that means watching my diet, and that, in turn, means eating smaller meals, eating less challenging foods, and cutting way back on sweets, wheat, and caffeine. 

So for the last few weeks, I've been trying to follow this advice--with a break for St. Patrick's Day--but it hasn't done me any good, at least not in terms of easing my symptoms.  Still running to the bathroom at inopportune times, still getting tummy grumbles after eating anything at all, still having unexplained cramping overnight and seeing too much blood in the toilet.  I'll admit I'm not the most stringent follower of these dietary guidelines, but shouldn't the modest improvements I have made be yielding any kind of benefit?

(Many of my IBD friends will read that and shake their heads, and as they sip delicately from their small cup of organic green tea with kombucha brewed for exactly 3 minutes with pure spring water, they will think to themselves, "C'mon Nancy.  You know there is no 'try.'  There is only 'do.'" And others will gulp from their super grande moccachinos and think, "Yeah, it's just not fair.")

Meanwhile, I have been continuing to drop my prednisone dose by one mg./day per week and am now down to 5 mg.  However, I've decided to settle in at this dose and see if I can stabilize before I go any further.

Sure, it's a little discouraging.  I am now about 9 weeks out from when I introduced those little whipworms into my system, and although I know darn well that different people react differently, deep down, I thought I'd be one of those people who started to feel better within just a few weeks.  But now that I think about it, I'm not even sure how that's possible, since those little buggers are probably not even all grown up and attached to my colon yet.  If you check out the lifecycle of the whipworm on wikipedia, they'll tell you it takes up to three months for those babies to grow up and go to work.  (For what that's worth.)

But what I'm dealing with now is not even so much about what's taking those worms so long to get going, I'm in the throes now about worrying about the persistence of some of the worst of my symptoms.  Had there been no worms and I was having these symptoms, I'd probably be in my dr.'s office right now talking about where to go now, even though I know the answer would basically be a shrug of the shoulders and a sheepish, "Maybe we should increase your prednisone....?"  So instead, I'm just kind of trying to ride it out, hopeful that in just a few more weeks, things will be looking up.

In the meantime, life is getting in the way of this little medical experiment of mine.  After leaving a job interview last week, I found myself driving to my next appointment and realizing that I had probably 2 minutes to find a bathroom.  Well, guess what?  I didn't make it.  So then, instead of being on my way to that appointment, I found myself turning the car around and driving home to clean myself up and change my clothes before getting back on track and finishing my errands as if nothing had happened.  I got through the afternoon and evening okay, but the next day was AWFUL...I spent the whole day in bed.  I was achy and had tons of muscle soreness.  My brain felt foggy and I was exhausted.  Oh yes, and dehydrated.  So dehydrated.

Once I felt better, things got back to normal a little bit.  This Sunday, John and I even resumed our weekly trip to the grocery store via bicycle.  I love that little warm weather ritual.  But of course, we got not halfway through the store before I had to make a mad dash to the bathroom.  And then, not 10 minutes later, I had to abandon our cart in the dairy section for another trip to the loo.  Imagine all that, and then realizing, "Hmmm.  And now I have to ride a bicycle loaded with 20 pounds of groceries home."  At least it's only a few miles, and all downhill, at that!

All of this makes it sound like things have been unrelentingly bad for the last few weeks, and that's just not true.  It's just that I have had a few more "bad days" and those days have been a bit worse than I'm used to.  Even though I didn't feel great yesterday, I was able to walk my dog without incident, and even jog around the neighborhood park a little.  But, on the flip side, I didn't feel confident enough to go for a long walk with a friend.  Today I have another job interview, and you'd better believe I'm going to leave myself plenty of time for a bathroom stop beforehand AND make sure I visit the loo again afterward.  But then I'm meeting a friend for a drink this afternoon--and who knows, if I'm feeling okay, maybe I will sip on an actual DRINK.

As I've been saying from the beginning, my friends, this is a journey I'm on.  And right now, it's a roller coaster ride more than anything else.  As usual, I'll just hang in there and keep trying to live a normal life.  Or some semblance thereof.

There Is No Free Lunch

I am reminded today that just because I have these awesome little creatures doing their best to bring my immune system under control, I am NOT off the hook for doing MY best to bring my immune system under control.  That is to say, I am still responsible for taking care of myself; I have not abdicated that responsibility just because someone else is on the job.

To explain: I just came home from a long weekend with friends in the mountains.  And although we sell it to ourselves as four days of playing in the snow, the truth is (for me, at least) that it is an extended opportunity to eat, drink, and shun sleep in favor of booze-fueled late night snowshoe expeditions.  I don't want to make it sound like I run with a pack of gluttons, but the truth is, we love good food, good drink, and each other enough to spend days on end indulging ourselves, with breaks in the action for a little skiing, a little sledding, a little snowshoeing, etc. 

I was nervous about this trip.  I had no idea how my tummy would deal with all the mayhem I was about to throw at it.  I was worried how I would do in a house of 16 adults, 8 kids, and 7 dogs (and three bathrooms.)  Add to that the fact that my safety net, John, wouldn't be there, and I was not sure what to expect.  But for the most part, my delicate system dealt pretty well.  Sure, my tummy hurt pretty much the whole time, I passed a fair amount of blood every time I went to the bathroom, and I felt the need to back off some of those outdoor activities, given the uncertain proximity to the loo.  But there were no "urgency emergencies,"  I didn't have to jump out of bed in the morning to run to the bathroom once, and I even got to enjoy my morning coffee without much ado.

And now, I ask you to re-read that paragraph and tell me what's wrong here.  Go ahead.  I'll wait while you re-read it.

Done?  OK, so did you notice that my whole attitude was about what my tummy did to me to make my life a challenge and not at all about what I did to make life hard on my tummy?  Let's start with the most obvious: food.  Who in their right mind thinks they can eat two Thanksgiving-sized meals a day, plus plentiful snacks, without repercussion?  And really, I shouldn't be chugging the amount of coffee that I did on this trip, but it seemed like the thing to do, especially since I was chronically tired from going to bed a little too late and tossing and turning a bit due to the stomach cramps.  Which brings up the issue of sleep: I know as well as I know my own name that getting too little sleep, and especially in a "travel" situation, is asking for trouble.  At least I was smart enough to not put myself in the situation where I would need to find a bathroom ASAP out in the middle of a snowshoe hike, but maybe there would not have been any reason to fear that if I had not filled my system with lots of rich foods, a fair amount of beer, and plenty of salty/sweet snacks.

Given all this, I'm pleased that I survived the weekend OK, but the uncanny thing is that I was not 15 minutes into the hour and a half ride home before I had to find a bathroom ASAP.  The poor ladies at the gas station were totally startled as I came flying into the store and flung myself down the hall to the restroom, where I locked myself for a good 10 minutes.  I got home fine after that, but my whole afternoon was one trip to the bathroom after another until I finally fell asleep on the sofa.  Sometimes, my body gives me a break when it needs to, but the bill always comes due.

So I got my come-uppance (and I'm still getting it today, unfortunately.)  And even though I know this already, I am reminded oh-so-vividly that I am still responsible for taking care of myself, and my whipworms are just one tool I have to do that.  I still need to watch what I eat, get a decent amount of exercise, and heed my body's cries for ample sleep.  If I don't do these things, or at least make a good faith effort, it will not matter how many pills I take, how many Remicade infusions I get, or how many helminths I have burrowing into my colon--I will still be sick.  It's just a reminder that the Union is a team, we're all working toward the same goal, and it's no fair if I sabotage the team's effort by not controlling the things I--and only I--can.

The next time I'm indulging myself (and let's face it: there WILL be a next time) I'm going to remind myself that as much as I love good food, good drink, and good times with good friends, there is no free lunch.  You're gonna pay, and maybe, just maybe, it's better to pay upfront by missing out on a few big meals, a couple of tasty beers, or a couple of late nights than it is to make life that much harder on the Union.