Do you think this has to be one of the most embarrassing diseases

Also without a doubt a very painful one too

Yes, it can be a pretty gross disease to have.  I've never not made the loo while I've been awake but a few times things got away from me while I was asleep.  It has definitely affected my social life and relationships.  Even now I'm in remission I still get caught short sometimes.

It makes it worse when others don't understand it too. I went out for lunch today with my boyfriend and thought i was over the flare id beeing having. I ate something that set me off straight away and had to make a run for the loo, and as i excused myself infront of the whole cafè my boyfriend goes.. "are you going to do a sh*t? Do you feel sick again? You havent even eaten much!" And i know he was concerned but he has no filter.

I totally agree...it's embarrassing. Who wants to have to talk about bums, poo consistency etc... and then when you're feeling really ill they have to stick summat up your sore ass to find out what's going off! I've spent the last 24 years trying to be of the mindset that 'everybody sh**s, everybody's sh** stinks'... so what's the big deal! Even after all this time I still get the panic if I'm out and feel that OMG I've gotta go NOW sensation! I hate this illness with a passion and really feel for all of you suffering too.

I find it so hard to get others to understand how nervous going out especially travelling makes me which, of course, adds stress so makes things worse. My husband is so understanding and tolerant but still dosent quite get that I can be fine one minute and rushing to the loo the next even though we have lived with this problem for years. Also if I have a bad loo experience the first question is what have you eaten ? Yeah I want to make myself ill for fun. Crappy disease in every sense of the word. Now am B12 and iron deficient so injections regularly to look forward to ! Good luck fellow crohnies .

That's the problem, we have these bouts and it drains our resources. Sometimes I feel like I am in some gross comedy. I know food and diet help but it's sad that we have to go through this. My ex used to make fun of me or just be nasty about it. Hence the ex?!?! But I am 40, and dating is so hard. Oh by the way I have chrohns so the loo will smell and I have accidents etc... 😩😖😖

Hi Tilania, yeah it is a horrible embarrassing disease. 

Even understanding partners don't understand completely. I often get told ' you'll be fine, there's a toilet' How many times do I think.. if only it was that simple... It's the anxiety, sheer panic, noise, embarrassment, pain, smell, fear of not making it in time, queuing etc...I won't be fine, I'll be stressed!! And NO I wouldn't like to go on safari, on long walks, on day trips out...... coz I spend all my time thinking 'what the hell will I do if I need the loo!' Rant over lol x

It can be, however I take it very seriously as it is a painful and disabling disease. I don't find it that gross as I have had mine under control for several years. If you are able to achieve remission then it isn't so bad, but the pain never seems to go away. I do hate the tests that are so invasive. This is the worst part. The doctors think it is no big deal. I get well just come in every year so we can snake a camera up your backside and then we will need to take several hundred biopsies so you will bleed for days, no big deal. For them it isn't, but for me it is like a bad dream. I read recently that experts are saying that we don't need to come in for the scope but every 10 years now so why was I told every 12 to 18 months? I think this is a way for doctors to make money. My rant is over. The disease itself can be really bad but when you are able to find a medicine that controls it then really not to bad. Hang in there you will find something that works and it will go into remission.