Time for Another Road Trip

Normally, I don’t get personal hygiene tips from the rest stops on the New Jersey Turnpike.  But these are not normal times for me.  Yes, you might say that a lot has changed.

In fact, I’ve become one of those people other people make fun of.  One of the people I used to make fun of.  One of those people that Bill Maher makes fun of on TV.

Yes, I am an OCD Germ-a-phobe.   I wipe down the grocery cart.

I also use hand sanitizer — 539 squirts per day (hereinafter “SPD”) unless I pump gas or use a public restroom, and then I hit more like 845 SPD.  [Please note that that middle letter is a “P” as in Peter, not a “B” like in “Silent But Deadly.”  While that subject is related to the concepts in this post, SBDs will be addressed in a separate post.]

I wasn’t always this way.  In fact, I became OCD just a couple of months ago.  It’s a side effect of a medicine I’m taking.

You see, I’ve been holding out on you.  I haven’t told you everything.  In fact I have told you almost nothing.

I haven’t told you that I’ve been sick.

Not “go to the hospital” – sick.  Not “gotta have surgery” -sick.  Not “I’m gonna die” –sick.

Nope, I’ve been  “I gotta do something”-sick.

I’ve been “I can’t live like this” -sick.

And I’ve seriously been “pain in the ass” – sick.  Literally.

My Crohn’s Disease has been partying in the lower 48 overtime since last fall.  In fact, it is trying to bust out of the joint (and the internal organs, too, as a matter of fact).  Mostly, it’s bustin’ out of my butt by eating little tunnels into itself to get out.

I sort of have my own Great Escape going on down there.  Only without Steve McQueen or  Illya Kuryakin.

I know this isn't Illya.  I'm keepin' him for myself. (Google Image)

I know this isn’t Illya. I’m keepin’ him for myself.
(Google Image)

Basically, my Crohn’s disease is attacking my body.  You would assume it would have better manners, wouldn’t you?  You’d think it would spring for a pizza instead of abusing my hospitality.

Now, there aren’t a whole lot of options with these tunnels – called “fistulas,” probably because they punch their way out.  They hurt.  As does the entire nether region.  Have you ever done anything without using your butt?  It’s the center of gravity — that and the feet.  That’s where all your weight is except when you’re lying down.

My primary symptom is a sore butt.  A very sore butt.  A butt that doesn’t like anything but the softest, thickest cushions to come in contact with it.  That Princess with the Pea ain’t got nothing on me.

Princess and the Pea.   She even has my hair.She even has my hair.

I had two options.

Option 1:  Surgery.  Been there, done that.  The surgical procedure was perfected during the Spanish Inquisition*

They gave me 60 Percocet after the operation.

They gave me 60 Percocet after the operation.  That should have been a clue that I would be unhappy with the outcome.

[Oh, there’s not need to break into my house lookin’.  The Percocet is gone.]

Option 2:  Drugs — Biologics, to be precise.  Expensive, intravenously administered drugs that suppress the immune system, making you, well, me, susceptible to all kinds of communicable diseases.  Which was why I didn’t want to take them to begin with.

Because I didn’t want to live like this:

I especially didn't want to be in the version with John Ravolta

I especially didn’t want to be in the version with John Ravolta

I didn’t want to live in a bubble.  I wanted to be able to go out.  Go to work.  Go to the grocery store, a movie, a play without risking my life.  Because I was afraid of being infected by someone who was out with the flu, with pneumonia, with any one of a thousand communicative diseases that might be communicated to me by air or by touch.

But it got to the point where I really didn’t have any choice.  I could not sit without pain.  I couldn’t stand without an aching butt.  Bending over hurt.  Breathing hurt.

And so I reluctantly agreed, and my doctor put me on one of those drugs with the really long commercials listing warnings and precautions.  Don’t worry though:  The risk of Priapism is quite remote.  And who knows, I might enjoy having an erection.

The good news about this new medicine?

I feel good.  I am getting better.  So those risks?  Yup, I’ll take em.  Because the medicine gave me my life back.  I just need to wash my hands a lot, do everything I can not to come in contact with sick people (Ha!) and then wash my hands some more.

Which brings us back to Jersey.  What does this all have to do with the Jersey Turnpike and hygiene?

Well, it occurred to me in New Jersey while I was at a rest stop, trying to not breathe or touch anything, that those soap dispenser thingy-s are relatively germ free.  I mean, you don’t have to touch them at all with your dirty hands after you, well, you know.  And I decided that I should buy one of them just as soon as I got home.  Who cares if I’d laughed at those gadgets for years – I needed one now, and that made it moderately less stupid to spend money on a battery operated soap dispenser.

soap dispenser

And so I did!

Only there’s a difference between mine and the ones on the Jersey Turnpike.   You know how those don’t turn on? You go down the line of sinks, moving your hand up and down, backwards and forwards, left and right, in front of each one and get nada.  Not so much as a bubble.

Mine?  You will be happy to know that mine does not have that problem.  In fact, mine won’t turn off.  And let me tell you that today’s interior designers should consider suggesting the idea of a red soap encrusted sink to all their upscale customers.

I think I need to go back to New Jersey to find out how to turn it off.

So I’m off on a Road trip!  To The Vince Lombardi Rest Stop to learn more about good hygiene.

*     *     *

Sorry I’ve been holding out on you.  It’s not that I don’t love you, really.  It’s just that, well, bowel disease is boring.  And messy.  And uncomfortable.  And did I say “boring”?  Yeah.  Blogging is my escape from poop.  Except of course when I write about it.  That’s when I laugh at it.  So help me do that.

I am looking for the “funny” in bowel disease again.  It has been harder to find lately.

And next time you’re in the grocery store or the movie theater?  Breathe somewhere else.

* Yay!  That’s the only search term that ever comes up on my blog. And I get to see these folks again!

 

All the photos are from Google, my God.

92 Comments

Filed under Crohn's Disease, Driving, Gizmos, Humor, Mental Health

92 responses to “Time for Another Road Trip

  1. Today, I went to the beach front with my children.

    I found a sea shell and gave it to my 4 year old daughter and said
    “You can hear the ocean if you put this to your ear.” She placed the shell to her ear and screamed.

    There was a hermit crab inside and it pinched her ear. She never
    wants to go back! LoL I know this is completely off topic but I had to tell someone!

    Like

  2. Being stuck with IBS, I know a little of what you speak. There are literally days I spend in the bathroom. I sometimes think I should move my tray table with my laptop & just communicate from the “throne.” I’m sorry you have been having so much trouble & glad to hear things are getting better. BTW, hubby has one of those battery operated soap dispensers in his bathroom too!

    Like

    • It is vital to like the decode in the bathroom when you have GI troubles, isn’t it? Sorry you’re in the potty club, too, Benze. It’s not one either of us wants to be a member of!

      Did you spend all day at 54.5?!

      Like

  3. Humor is the only way to deal with the yuck factors in life and you seem to be doing a good job of that. Glad the new medication is helping. I hope everything works out in the end. 🙂

    Like

  4. I’m glad you are feeling better and there’s no need to apologize for holding out. I can never get those dispensers to work, It seems there should be some intuitive gesture that works. I carry my own with me on my camera bag.

    Like

  5. Let me know how the erection works out. That’s much more pleasant than enduring my family laughingly suggesting they could be donors for a fecal implant if I’d like to go that route. Sigh.

    Like

  6. Pingback: Confessions of a Pooter-Pack | FiftyFourandAHalf

  7. Bummer about the latest battle, but cheers to the current relief. At least Crohn’s hasn’t attacked your sense of humor … maybe because it’s scared to … but I wonder, did Howard Hughes had a sense of humor?

    Like

    • Thanks Frank. It did get me off my humor for a couple of months, actually. I was pretty miserable. And I did not not not not not want to take this drug. Now I can’t wait for my next dose!

      I’m pretty sure that Howard Hughes did have a sense of humor. After all he designed the “Spruce Goose”!

      Like

  8. My brother in law has Crohn’s. Sometimes he gets so thin he almost disappears. It’s not boring – at least not the way you write about it. Get better soon.

    Like

    • This comment got stuck off in spam — so sorry. I don’t check in there very often. Out of 214 comments in the bin, yours was the only real one!

      I hope your brother in law is doing OK. Crohn’s really is a pain in the ass in oh, so many ways. Like your BIL, I have a weight problem, but not the same one as his. If he ever needs 20 or so, I could spare them. Sigh.

      Thanks for your kind wishes. And if your BIL needs someone to bitch to, you are always welcome to send him my way.

      Like

      • Lol! Spam issues finally rectified – thanks for getting me out 🙂
        I’ve just discovered I’m gluten, egg and cow’s milk intolerant so will no doubt be dropping a few pounds with all the food I can’t eat any more. Digestive troubles are distinctly fun free.

        Like

        • Glad to have let you out, but not to hear that you can no longer eat anything fun.

          But I’m pretty sure that good health, like youth, is wasted on the young!

          Like

  9. Sorry to hear you have to spend so much time in the bathroom, though if you like to sing the acoustics are usually quite good in there.

    Glad the new medicine is working for you.

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    • Thanks, Sandy. I DO like to sing and the ceramic tiles make my voice dance around the room … I prefer to sing while I shower rather than while I’m pooping. The rhythm is just off.

      Like

  10. You are my second blogging buddy with Crohn’s. Pithypants is rather newly diagnosed. (Which makes her blog name especially ironic.) I’m sorry you’ve been suffering so much, but good news! You found the funny!

    Oh, and by the way: I needed no explanation for how the rest stops on the Jersey Turnpike related to your need to stay germ free.

    Like

    • I just stopped over there to wish her well and left a comment. Thanks. It’s often a confusing thing and I really don’t know too many folks with it. Even having had it for a billion years, it’s a challenge.

      But yeah, I’m feeling better and able to see the humor again. It’s when I can’t that I get really nervous — it’s as if my whole personality changes.

      Ah, the Jersey Tpke. What’s not to love?

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  11. You seriously have grounds for wearing a very cool Super Hero costume while out in public. You could wear one of those white masks and sterilized gloves. A big brown “C” could be blazoned across your chest (or maybe a “P”). Best of all your could wear a utility belt and a cape. Hidden inside, in a well organized fashion would be hand sanitizer, wet naps, disinfecting soap, maybe some sterile cream for your sore butt. I think you could totally pull this off. You are already a the Super Hero of Crohn’s in my books you might as well look the part.

    Like

    • A utility belt! Now there’s an idea. I currently carry a little make up purse with me that holds all the creams and stuff I need. But just this week, the wise folks in my building changed TP types from normal to an exfoliating brand. I’m pretty sure it’s called “Quilted Sandpaper.” I now will need to carry my Charmin with me to work. We are not amused.

      Thanks for your nice words, Michelle, and the laugh. I’ll work on that costume. And the motto. Right now the only one I can think of is “Willing to jump over children to get to the last free stall.” And I don’t think that goes along with the whole Super Hero gig!

      Like

  12. So, my own immune system is horked-up, though for different reasons — I get the Germ Caution. It’s strange that people, even now, can be uncomfortable when I tell them about my HIV, because they’re afraid it’s going to jump off me, and into them… but, really, I have to be more scared of them. But, once cannot live in the bubble… though, one could let all the SBDs one wanted, without having to worry about inflicting the BD part on others. And, I bet the bubble is easy to clean … just hose it down, and call it a day.

    And think… you’d be breathing filtered air, so no carcinogens. And, hey … if there’s ever a flood, I bet you’d just bob along in your little bubble…

    Seriously, though … I am sorry the poop hasn’t been funny. I can understand that. I always know when I can’t make jokes about my ills, or my depression, that things aren’t good… the laughs do help to keep us floating …

    I know you had a surgery before … but, wasn’t that a long time ago? Have they made improvements? Surgery isn’t fun … but, sometimes we have to do the unfun things to make life fun again.

    Sending you a BIG HUG from Denver….

    P.S. Good luck with that erection, should it happen … might provide a few hours of entertainment.

    Like

    • You have a good memory, John. What I think of as my “big surgery” was 30 years ago. But there have been more including the one I had in 2008 that I thought was going to be NBD. But they inserted a piece of plastic with teeth on it into my butt. It was terribly painful. My doctor recently corrected me and said it was “uncomfortable.” “Would you like to try one?” I politely suggested. She did not jump at the chance. It was designed by the Spanish Inquisition. I am told that they have improved the technique and the tools. I certainly hope so because I am likely to have another round. Oh we’ll.

      You have had your own trials, and none of it is any fun, is it. I read a lot Bout HIV and depression too. Chronic disease and depression go together like a horse and carriage, don’t they.

      I really am going to have to work on that fart post, I guess. There is no end to the amount of humiliation I will not endure for my blog ….

      Like

  13. I’m so sorry that the Crohn’s has decided to bite you in the butt again, but very happy to hear that the new meds are working. I wish I could remember where in the world I was, when I discovered the perfect public bathroom. The toilet seats had the tubular plastic bag covers over them that change automatically after each use. The soap, water, and paper towels were hands-free operated. I wish every public bathroom you have to use could be like that.

    Like

    • I wish that they were all non-gross for everybody.
      I’ve seen those toilets in Europe. But when we lived in Switzerland, our favorite pizza place in Nyon had one of these toilets. I used to send people into the bathroom and tell them to just flush and watch!

      Like

  14. I guess I never truly thought about how much one uses their arse. Damn, Elyse. I wish you didn’t have deal with this shit….

    Like

  15. My butt aches for you…

    Like

  16. Snoring Dog Studio

    You bought that contraption at the Sharper Image, didn’t you? Or from one of those airplane magazines? Both places are known for their Products-That-Don’t-Work-Or-Break-Immediately. It’s funny and odd, but I’m on my fifth kitchen soap dispenser. I don’t think the soap is supposed to dispense from the bottom of the thing and lay in soapy puddle on the counter. Good luck at finding one that works.

    And you have just joined my list of people I most admire for their courage and perseverance in the face of adversity. I’m so glad you feel better because you are one of my favorite bloggers, too.

    Like

    • Actually, I got the gizmo at Bed Bath & Beyond. But fortunately I only bought one. I was thinking that maybe one for the downstairs bathroom and the kitchen would ensure I would be germ free-ish at least at home. But then I thought, what if it is as stupid as it looks? What if it works as poorly as the ones on the Jersey Tpke? So I only bought the one. Which is good because it took me ages to clean up the mess. It hardened because I was laughing too hard to get it up right away!

      Thank you for your kind words, but I don’t think that courage has much to do with it. As my father used to say, “You gotta do what you gotta do.” For me, that generally means I have to poop.

      Like

  17. Only you could make a post about your aching ass funny. Oh it sounds so unbelievably agonizing, I really can’t imagine what you’re dealing with. I mean, you’re right, we use our ass for just about everything! Amazing what we take for granted with our health and only realize once something decides to go off and attack itself.

    I don’t think you’re a germaphobe, well, unless I am one to because I wash my hands a lot, especially when out in public (blech!)

    Hang in there best you can, keep using that handy-dandy dispenser and keep on finding the humor in the bowels. It’ll help you heal.

    Like

    • It was pretty awful for a while, but the medicine has helped so much, I can’t begin to describe the difference. Remember those awful laxative ads with people dancing to “I Feel Good Dananananana” — well, there you have it.

      I live in bathrooms. So I am always washing my hands. AT home and out. I go to one particular grocery store because it has the nicest bathroom (and doesn’t carry half the stuff I want to buy). Whatever …

      I think I may just need to sacrifice that one thin shred of pride I have left and do that fart post …

      Like

  18. Glad to hear you’re feeling better. And on your road trip, see if you can figure out why the automatic toilets don’t flush automatically, either. Why is it that technology never seems to work the way they promise us it will?

    Like

    • Automatic toilets are a trip, aren’t they? Since I tend to be in those stalls for a while, they tend to flush randomly (no doubt thinking: she must be done by now). Until I want them to. Then they don’t. Or they flush with such gusto that I need to use sanitizer all over my body. Yuck.

      But I promise to let you know when I figure it out.

      Like

  19. I might run into you – was just at the Vince Lombardi two weeks ago hearing my mother go on and on about the germs. It’s my favorite rest stop as it’s named after the same coach a gym at my college alma-mater is named after. I just found my mom’s birthday present with your bathroom gadget. Thx for the tip!

    Like

    • Make sure it turns off — cleanup was a pain. Or it would have been if I hadn’t been laughing so hard!

      It is the worst of all rest stops, Vince’s. Yuck. I always expect to find a mafia body just off the parking lot. And you know that would be filled with germs!

      Like

  20. bigsheepcommunications

    First and foremost, it sucks that you’re going through this. On the bright side, I’m so glad you’re starting to feel better and who would’ve ever thought something good would come from a NJ Turnpike rest stop? Wishing you good health and a happy bottom.

    Like

  21. As my colitis ridden mom would say “everything revolves around this ass” and that is a literal term. I thought I should make that clear because it could mean so many more things. I’m so glad you are feeling better!!! They suggested that medication for my mom, but since she lives in a communal environment, plus her age they said no way. Isn’t it crazy how many disgusting things you notice when you’re afraid of them…yuck! Oh, I found hazmat suits online in fashionable colors if you’re interested. Be well friend.

    Like

  22. So sorry this is relentlessly afflicting you… Glad you have found some things to alleviate the discomfort…the new med, the soap dispenser and returning to your blog although that requires the sitting position. We got one of those soap dispensers a couple of Christmases ago…I will say it encourages folks to wash their hands…such a cool gadget. Take care.

    Like

    • Did you figure out how to turn it off?

      Thanks Georgette. It is a pain, but the meds really help. I wish I’d been less afraid of them and started them sooner. They would have much less to heal. Oh well. Better late than never.

      Like

      • hmmmm…you do have to be sure nothing is under it or a steady stream comes out. It’s very sensitive…we have wasted a lot of soap learning how to use it and work around it.

        Like

        • I’ll keep that in mind. It sounds as fickle as the public ones, I’m afraid.

          I’m going to just return the one I have and try for a different one!

          Like

  23. I knew about CD but I did not understand how it really affected your life. It sounds real bad, but you have a PMA in the way you are dealing with it. I had a real good blogging buddy once, called Classy Rose she also had CD. We lost touch over the years but now I’ve read your post I wonder if I shoud get back in touch.

    Thank you for sharing and giving us a peek into your life-bubble

    PiP

    Like

    • Thanks Pip. CD comes and goes, flares up and is nasty and then naps for a while before coming back again. It is a pain in the ass, literally and figuratively. Oh well.

      I have to have PMA because I am officially too old to have PMS!

      Like

  24. I think crusted soap should be the new design flavor of the year, just so we can follow your trend. I will rush out to be just like you, tomorrow; promise.

    Sorry Elyse, wish this weren’t happening. You are not a phobe, you are not being irrational at all. Buy stock! Think my friend, if you must continue on this track, stock in the sanatizer stuff will rise!

    When the ex gave me HepC, I had to do a round of nasty meds that shredded my immune system. I understand, I truly do. Live in bubble or find ways to live. You wrote this so well, with wit, as always. If there were anything I could do to help, I would do it in an instant.

    Like

    • You are a great pal, Val. But I just have to do the medicine and rest when I need to. Mostly I ignore it which is partly why I didn’t write about it. That and I was crabby and depressed and couldn’t find the funny which makes it sooooo much easier to deal with.
      I’ve been reading about HepC — they (Medical Health Professionals) are worried that a huge percentage — a majority — of baby boomers have it. Oy. Hope you’re done because it sounds like the treatment was nasty.

      Mine is not. I have an afternoon IV and sit around napping, reading blogs or watching TV. Although the last time my blood pressure kept rising because there were men in adjacent bays who were selling assault rifles to each other. So that was fun.

      Buying stock. What a great idea!

      Like

  25. I certainly don’t have nearly all the problems you have with Crohn’s, but my “lower 48” still manages to complain if I eat the “bad foods.” Seriously, tummy, what the heck? Hope you get feeling better soon – crazy meds and all.

    Like

    • Thanks, Sarah. It’s amazing how what you eat makes you feel good or bad or somewhere in between some times. Of course, with me, I don’t know until after I eat it, because it changes. Oy…

      Take care of those lower 48. Alaska is much too cold in the winter.

      Like

  26. No one wishes Chohn’s. Everyone wishes all the soap dispensers everywhere worked all the time. What few can do is to find light in the midst of all that AND the agony of the lower 48. You did that. Clarity, honesty and a dark sense of humor all wrapped up in some simple imagery. Blog well posted. Blog community alerted. You are not alone. Thanks for the honesty. Refreshing display of the humility involved in surviving.. Dan

    Like

  27. Luanne

    I didn’t like it because you’re sick. I don’t have a reason for my germophobia, but then Crohns can cause almost anything, I think. Have you read my friend’s blog about Crohns, The Crohn’s Diaries? http://livingsick.com/2013/07/10/summer-pain/

    Like

  28. Is this drug you are taking supposed to eventually beat the disease, or is it meant to alleviate the symptoms – but keep you in the bubble forever?
    Also, I wouldn’t call you a germophobe: a “phobe” implies irrational fear – but yours is completely rational.

    Like

    • There is no cure for Crohn’s, only treatments. But I swear I felt better immediately. One day I could barely move — dragging my tail as my boss (an MD) said in her most learned voice. And the next I was wiggling my butt around the office laughing.

      So I will be on this one until they find something more, ummmm, expensive.

      Like

  29. So sorry to hear your Crohn’s has been flaring with a capital F. I’m glad the medication is helping, though I know the fear a fever can induce when one is taking those meds (is it bacterial? is it sepsis? is it simply a virus?) I wish you luck, and I hope things simmer down. Your sense of humor is inspiring, and as always your writing is a joy to read, both for content and for style. 🙂

    Like

    • Thanks Carrie. I was in denial for quite some time. I wouldn’t/couldn’t admit that I was sick because it was so different from other flareups. Sigh. Oh well. Now I’m doing what I have to do. It’s a great drug as long as nobody breathes on me!

      Like

  30. Elyse, I’m glad you’re feeling better. If living you life means having to be a tad germophobic, I’d say that’s not to steep a price to pay.

    BTW, I love this one. It was well-written and hilarious. Poop.

    Like

  31. I want to buy one of those dispensers now! It would be much, much better than carrying around bar soap . . . like, um, “a friend” is doing right now.

    I’m sorry that you’re not feeling great, but glad that you’re feeling better, and that you can bring the laughter even to this. 🙂

    Like

    • Thanks, Deb. I’d wait on the soap dispenser until I find a deluxe model that turns on and off. Especially if it will be in your purse!

      Like

  32. I’d be honored to kick in for some stylish protective gloves for you to wear out in the world to cut down on germ contact.
    (But they have to be sequined, like Michael Jackson’s socks.)
    (Oh, don’t be like that. MJ slept in an sterile oxygen tent.)
    (Kept his skin supple.)
    (Didn’t keep his nose on tho…)
    (I’ll throw in some duct tape.)

    Like

    • Perfect. I love the idea of those gloves Guap. And I know for a fact that Michael died a happy man. I’ve had that drug, Propofol. But I’m not ready for that yet. The gloves, yeah. The duct taped nose, nah. But thanks for offering.

      Like

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