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.