Crohn's Disease & Parcopresis (The Inability To Defecate With People Around)

[Ataraxia]

Hi, guys,

I wrote this article over the last couple of days. Please take a look and let me know your thoughts, if you can.

"Parcopresis, or "Shy Bowel", as it is commonly known as, is a physical/mental disorder that permits an individual from defecating in toilets that aren't their own and/or when people are close by to the bathroom."

Read on:
http://www.andycarrington.co.uk/crohnsparcopresis

 

[Emily]

Good piece you wrote Andy! This is my whole life, even when I'm not flaring and have the most normal poos in the world. Because since such a young age I've naturally and almost subconsciously "held it in", I can go many days without going at all and have trouble going even in my own bathroom with nobody around. My brain has a barrier that it has to get across before it'll happen. Wonder if anyone else has this.. you know not just in public, but in private and/or always.

 

[uhmayzing]

I didn't yet read the piece, but I had to respond...I had this up until my IBD started...now I just don't have enough time or ability to "hold it in" anymore until my hubby and three kids decide to give me a minute. As a child/young adult, id sometimes wait to poo until the house emptied out and id NEVER poo in a public toilet. I was married 8 years before my IBD symptoms started and only then did my husband get to hear me break wind. I think maybe now he'd like the old wife back...

 

[KayleighK]

I've had this problem my whole life! Before I had any symptoms of crohn's growing up my dad would always tell me I was going to make myself ill because I just physically could not go anywhere else but my own toilet. Even when I had C-diff I was unable to "just go". I've just recently got out of hospital and it happens every time I'm in hospital It takes me ages to go. It so infuriating as staff think because I have crohns I should be going every two mins. The added stress of knowing I have to go into a hat then hand it over to some random person so they can have a good root around in it freaks me out. What a relief to read this is an actual thing that happens to people and not just me. Thanks for the post!!

 

[Ataraxia]

There's definitely a psychological element to it, I think. With the house empty, I can go anywhere up to twenty times a day. When it's occupied, the urge to "go" most times isn't there, and that's where the horrid stomach cramps start. It's worrying. More research needs to be done.

 

[Rebecca85]

I didn't know it had a real name! I call it Safe Toilet Syndrome. 9/10 I don't feel the urge outside my own house. The other 1/10 I am typically too tense to physically go. On the rare occasion I do manage to go outside my house, it hurts!!

It does lead to some hairy moments as I get closer to my house, and my bowels awaken. I once had to abandon my rabbits in their carrier on the doorstep, and leave the front door wide open because I HAD to go.

 

[Mountaingem]

Good job Andy! I think all of us have this to some extent. I think it comes from bad experiences in public restrooms or around other people.

I have this problem in a public area, like a sports arena or concert hall. Every year I attend a convention for 3 days and end up with a terrible bowel infection, ugh.

I dread it when I am in these types of facilities, but what can you do? It doesn't help that I've had women with kids pound on the stall door and want to know when I'll be done in the middle of an epic case of diarrhea. Or have had people comment on odor, etc-no wonder Crohnnies develope psycological issues with going in public.

 

[Ataraxia]

Good job Andy! I think all of us have this to some extent. I think it comes from bad experiences in public restrooms or around other people.

I have this problem in a public area, like a sports arena or concert hall. Every year I attend a convention for 3 days and end up with a terrible bowel infection, ugh.

I dread it when I am in these types of facilities, but what can you do? It doesn't help that I've had women with kids pound on the stall door and want to know when I'll be done in the middle of an epic case of diarrhea. Or have had people comment on odor, etc-no wonder Crohnnies develope psycological issues with going in public.

Thanks.

I feel for you. It's a nightmare having to think about where the next toilet's going to be when you leave the house with the probability that you may not be able to go. I hate that feeling.

Any other information on the subject from other people will be greatly appreciated. I may write, but I'm a patient, too, and I don't have all the answers, unfortunately.

 

[Ataraxia]

I didn't know it had a real name! I call it Safe Toilet Syndrome. 9/10 I don't feel the urge outside my own house. The other 1/10 I am typically too tense to physically go. On the rare occasion I do manage to go outside my house, it hurts!!

It does lead to some hairy moments as I get closer to my house, and my bowels awaken. I once had to abandon my rabbits in their carrier on the doorstep, and leave the front door wide open because I HAD to go.

Parcopresis is a horrible thing to have on top of Crohn's. I admire your honesty, though, Rebecca. More people need to talk about this.

 

[KWalker]

There's definitely a psychological element to it, I think. With the house empty, I can go anywhere up to twenty times a day. When it's occupied, the urge to "go" most times isn't there, and that's where the horrid stomach cramps start. It's worrying. More research needs to be done.

I'm the same way. If it's just me and my fiancee' at home I'll go whenever I need too, but if we have friends over, were at other people's houses (even family) or I'm at school, etc I'll hold it as long as I can until I can go in my own home. I wouldn't say that I'm not "able" though, but for me it's more of just the embarrassment that someone might hear my diarrhea. Sometimes when I'm walking with people I'll just suddenly stop and sit down and make up some excuse that there's no rush, or I want to sit for a second, but really I just have a huge urge to go to the bathroom and I need to sit until it passes.

 

[Rebecca85]

For the record, my parcoparesis started way before my Crohn's did. I remember when I was around 10 or 11, we went on a camping holiday. With public toilet blocks. I didn't go for a week. Boy that hurt when I finally got home!

Since then I have been slightly better about forcing myself to go if I'm away from home for a long while. But if it's only for a couple of days then my body tricks me into thinking I don't need to!

 

[Ataraxia]

I'm the same way. If it's just me and my fiancee' at home I'll go whenever I need too, but if we have friends over, were at other people's houses (even family) or I'm at school, etc I'll hold it as long as I can until I can go in my own home. I wouldn't say that I'm not "able" though, but for me it's more of just the embarrassment that someone might hear my diarrhea. Sometimes when I'm walking with people I'll just suddenly stop and sit down and make up some excuse that there's no rush, or I want to sit for a second, but really I just have a huge urge to go to the bathroom and I need to sit until it passes.

Embarrassment is the main problem, K.

Also, time. I definitely can't do a "quick poo". Even when I've "finished", it still feels like I need to go. That comes with having Crohn's, and I don't think that will ever go away. So I feel the need to sit on the toilet for ages, and take my time to empty my bowels as much as I can, when I can. Feeling like I need to rush permits me.