I Have Crohn’s Disease, and I Have to Poop.

by on Wednesday, March 7, 2012 7:03
This entry is filed under: Coping/Support

So, friends without large bowels, how are you? What’s new? How’s the plumbing working? Mine’s been so-so lately. I feel like I’ve been on the verge of a pouchitis/Crohn’s flare.  It’s not bad enough yet that I have succumbed to my emergency meds.  I know I need to, but I’m stubborn like that.  I’ve pressed on, living my life, but I’m tired and my tummy hurts.  I’m also pooping more than normal.  It’s that standard pouchitisy thing  where you are all, “OMG, I gotta go. Real bad. NOW! MOVE!” Then you take a seat and disappointment sets in. Once again, guts aren’t cooperating.  You can muster up something, but not what your guts and mind had envisioned pre-run.

Your next logical question is, “Why is there am amusing drawing of Thom Yorke (lead of Radiohead) dancing over there? What on earth has this to do with Liz’s bowels?”  Here’s your answer:  Couple nights ago my hubbs and a group of friends went to see them.  It was a great show, and for me, the highlight was watching their front man shake his grove thang.  He has some sweet moves.  How does this tie into a relevant jpouch.org blog post? Here ya go:  I have to shit. A lot.  Especially at long events.  Something about the standing around, drinking water to stay hydrated means I gotta go a lot.  Maybe I notice this because I’m older, or because I moved from uber kind hippie NW to impatient, get-the-fuck-out of my way-Dallas, TX…but probably both.  We got there early. Really early to reserve a good spot.  Since I have to poo a lot, I was the sacrificial lamb to bring back drinks, you know, “On your way back from the bathroom.”  I went probably three times before the actual concert started.  I was polite and even explained why I was causing the very minor inconvenience of asking someone to “Excuse me.”  “Sorry, sorry, excuse me, going to the bathroom….sorry, pardon me…bathroom.”  One woman was so rude to me when I said that.  I won’t repeat what she said, but her anger really confused me.  I have no idea why asking people to move during a show of any kind (esp. when nothing is happening-no band was playing yet-I call this my pre-emptive poo…) is so infuriating to people.  As a good Chronie, I found a friendly security guard to give me the layout of the place (ie, nearest bathroom), explained my predicament, and got a kind response. Why can’t the general populous do the same? I understand that some people are rude, easily annoyed, and just plain mean, but as a person with a legitimate reason to go to the bathroom, I was kind of offended by the rudeness of the crowd.  I decided, for any future big event I’m just going to wear a shirt that says, “Excuse me, but I have Crohn’s Disease and I have to Poop. Thanks.” I also realized that it’s probably time for me to take advantage of this whole “disabled” thing when I need to, and I realized that at things like that, I need to.  So, I think from now on, instead of making myself (and apparently others) miserable, I’m gonna hang out in the easily bathroom accessible handicapped section.

What do you guys do in situations like this? This question applies both to dealing with bathrooms at large events and the subsequent annoyance of those around you.  I kinda wanted to say to the lady, “Actually, I have an incurable disease that took away my childhood, some organs, and still makes me have to shit all the time, but thanks for being a bitch about it.”  Instead, I took pity on her bad attitude and gave her a genuine smile as I walked away towards my original intent: finding the toilet.

The moral here: Our trials have made us kinder, wiser, more patient people, especially when dealing with rude assholes, but I have a much shorter fuse when I don’t feel well (like now) and wonder if any of you have really let someone have it before. Do tell…

I should also say that I am proud of myself for taking the high road and doing the yogic thing of being kind in the face of outright ignorance and that I hope all of us do the same. However, the situation at the concert brings out the advocate in me, and I’m still fired up.  The next logical step is to solve the problem, which I think I’ve done with my new plan of “hanging out handicapped,” but my overall frustration is still that I couldn’t simply say to the woman, “I have Crohn’s disease” and be done with it.   I’m also frustrated by the lack of kindness in our world right now.  I shouldn’t have to explain anything, the woman should never have been that rude to me.  Obviously, I feel sorry for her, much more so than myself, and maybe that’s the lesson? Maybe there is no lesson, but damnit, I want one!  Either way, it motivated me enough to post about it and maybe try to work with venues to make things more accessible.  If you have any theories, let ‘um fly. And thanks for reading :) Now, go do the Thom Yorke.

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16 Responses to “I Have Crohn’s Disease, and I Have to Poop.”

  1. avatar

    Pat O'Brien says:

    March 9th, 2012 at 1:44 pm

    Feeeel ur pain. I could amaze people where I have crapped. Sorry for the rude bitch at the concert. Can’t cure dumb ass or chrohns. Forgive and pray. Best thing you can do is dance your ass off…then go poo.
    At least we have legs to go. Party on.



    Lizz Reply:

    Ahahaha! OMG, that was gold, Jerry! GOLD! Seriously though, “can’t cure dumbass or Crohn’s” haha! I guess I’d rather have Crohn’s…
    I like your style, Pat O’Brien.


  2. avatar

    Dawn says:

    March 23rd, 2012 at 7:49 am

    Hi Lizz, I am new to the j-pouch world, having my take down surgery in exactly 19 days (it can’t come fast enough, this ileostomy thing sucks big wet ones – how my sister made it 20+ years with one is still beyond my capacity to comprehend). I was diagnosed with panulcerative colitis almost 10 years ago, and last year they found “dysplasic” cells amoung my damage. My colectomy was Jan. 31 at Tampa General Hospital under the expertise of a marvelous Dr. Marcet. I am thrilled that I have found this website/blog. I know what it feels like to know where every bathroom is within a 5 mile radius of my house, and the first thing you do when you go somewhere new is ID where the lady’s room is. Glad to know somethings won’t be changing. I hope to be a regular.



    Lizz Reply:

    Hi, Dawn! First off, welcome :) Secondly, you probably will not be hunting down bathrooms with the same voracity you have in the past. Most who have this surgery do very well. I have had several complications and I still go about a third as much as I did pre-surgery. Yes, it’s still more than a “normal” person, but no comparison to how it was before. When I have pouchitis, life’s a little different, but again, it’s still nothing like living with UC. Pre-surgery I spent most of my time bed-ridden or in the hospital. Now, I just crap a lot at concerts/get tired and kinda bitchy. It’s a big step up, so you have something to look forward to :) You may be one of the lucky ones who have no problems, and go on to live a life free of support blogs. But know we’re here if you need us :)


  3. avatar

    Susie says:

    April 4th, 2012 at 11:42 am

    This is a great site! I totally agree that once you lose your sense of humor, this disease gets the best of you. Me and Lilly (the illy) find much to laugh about. How many people do you know who can relieve themselves without taking any clothes off? Well, at least without Depends! And we can honestly blame the dog for farting…I could go on and on…haha. I am on round 2 with my stoma. Had a colectomy/illeostomy surgery 16 mo ago, reversal 12 mo ago and another illi surgery 5 mo ago. It was a crappy (pun intended) year but doing so much better the 2nd time around. I’m not so anxious to get rid of Lilly this year, want to give myself better odds for healing. This is however the first summer I have had with her and trying to hide her with layers is ok for winter and spring but wondering if anyone has any tips for summer? I’m thrilled that the “baby doll” fashion look is still in. : )



    Lizz Reply:

    Thanks, Suzie! Let’s see…I am trying to remember any of my fashion tricks from summers with the shit spout (mine ran ALL the time.) I wear dresses a lot anyway, so I think I rocked quite a few of those then. Bathing suits were obviously of the most concern, so I just got a black one piece and tried to keep the bag empty. You really couldn’t tell. There are also some super adorable fashion lines that are ostomy-specific. Here’s one from the UK that has some super cute bathing suits: http://www.vblush.com/


  4. avatar

    John says:

    April 7th, 2012 at 9:18 pm

    I was amazed to find this site and read this post because it is exactly what I deal with all the time Huge urges to go to the bathroom, then (often) total disappointment when I maybe, maybe get out 10% of what needs to come out. Then I spend all my time feeling like I have to go with no satisfaction. I honestly didn’t realize there were lots of other people dealing with the same thing. I’ve had my j-pouch for 22 years now (I am 41) and these problems have escalated in recent years. It’s still manageable, but it definitely slows down my life. It really helped me to read this and know I am not alone. Thanks. Fun read too.


  5. avatar

    Lizz says:

    April 9th, 2012 at 3:38 pm

    Thanks for the compliments, guys! It’s always great to hear that my snarky posts help people out :)


  6. avatar

    Susie says:

    May 2nd, 2012 at 1:48 pm

    Thanks Lizz for the link. Once I got over that my tight tshirts and tanks are no longer the top layer, I’m doing much better finding clothes I can be comfortable in. I also finally realized that everyone is NOT staring at my belly just like I’m not staring at theirs…lol.



    Lizz Reply:

    Excellent point! I think when we get the bag, we have this irrational fear of it being visible, but, as you so perfectly stated, no one is really looking for it! What surprised me was when curious people who did know (my friends, family) asked if they could see it. “Um, yeah…if you want to?” *BAM!* Flip out the shit bag. Then everyone marveled at the wonder of medical science.


  7. avatar

    post antibiotic says:

    May 15th, 2012 at 9:22 am

    Lol. Bishop got his 1st blood test at 1 year. The dr called and said we had to come in for results. WOULD not tell us over phone (policy.) we were TERRIFIED. Lol. Turns out his B vitamins were OFF the CHARTS!! What can ti say? Nutritional yeast ” We put that sh*t on everything!!”


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