Just what is it about having Crohn's!

[karj]

Hi all

This is just a complete general rant. But I am sick of this disease and how people out there really don't have a clue what we go through on a daily basis. It's not there fault but it really can be 'but you look fine' kind of a disease.

Do ye find that when it is not active, you completely forget that you have it, like it completely goes out of your head. You can decide to take a drive no problem, a walk, a cycle. go somewhere sporadically with a friend. Be spontaneous with your other half. Never worry at work about going to the toilet.

And then there is the other side - when we are flaring. The constant obsession with the toilet. The eyes popping out of the head syndrome when you don't know where it might be. And it is not good that today you only had 2BMs instead of 6 or 7 the day before because you still worried that you were going to have them. And you didn't leave the house because you were worried you won't make the toilet. And then your friends say but it isn't that bad at the moment? And you feel like screaming at them and saying to them that they have no idea, the constant worry. It is like being chained to the toilet.

Does anybody else feel this way or is it just me?

 

[ronroush7]

The outside world, for the most part doesn't understand us.

 

[Beach]

I know! It's awful. No one understands, or really wants to. It can be bizarre too. I can explain to others what the condition is like, go into detail, and then later the person will come up with a strange entirely different theory on how I'm or should feel! It is a cursed, frustrating condition to have. It used to bother me when I was younger. Now I tend to roll with the punches, make jokes about it. Often times when feeling poorly will just say you couldn't understand.

 

[ronroush7]

My first flare , I lost 34 pounds. I joked about it. On the other hand I have had embarrassing incidents.

 

[Pug Gamer]

I have mixed reactions, a lot of 'oh you must go to the toilet alot?' and 'does it make you very gassy?' but then some realise how bad it is. The only person to really get it is my fiances nan, I didnt know but she was a nurse 50-60 years ago and she had to look after people with crohns. Where she was they didnt really know much and were learning a lot but when my partner told her I have it, she said 'oh no, thats a absolutely horrendous disease, what a poor poor girl, I wouldnt wish that on my worst enemy'. She saw people suffer, get better and even die. I dont know why but it made me feel better, that someone unrelated to gp's etc understood. And it made my in laws family really realise.

 

[eleanor_rigby]

My disease is confined to my small bowel. I don't know if maybe that is why but I have never had any issues with D. I never wonder where the nearest toilet is, no matter how poorly I am. Sometimes I feel like I don't know who I can relate to - can't relate to healthy people and I can't always relate to people with Crohn's. When I read your post, it was like it was written by someone with a completely different illness to what I have. But my struggle is daily at the moment, and my symptoms are pain.

 

[karj]

My disease started in the ileum. I started my disease with bad pain when I was first diagnosed. It used to be unbearable but over the years my disease shifted to my large intestine down near the rectum. I think it was worse for me when I had it in the ileum as I couldn't eat a thing without setting off the pain so I can see where you are coming from.

 

[scottsma]

I was diagnosed 10yrs ago,and toilet visits are constantly in the back of my mind,even when in remission.I can't plan future days out until the actual day itself,until I know how things are going.Luckily friends and family are used to it.What really annoys and worries me is the closure of public toilets.Apparently councils are not duty bound to keep them open.So what are people to do when they're out walking or cycling,or have small children,or are elderly ? Is it not our "Human right" to visit a toilet when we're out ? They'd have plenty to say if we all used the streets when desperate.Sorry,rant over.

 

[ronroush7]

Amen