I have a strong tendancy to (when I go out anywhere) to need to know where the loos are in case I feel unwell suddenly, which can happen sometimes. I was wondering if anyone else does this? I have Crohn's in my small bowel, so it is quite high up, so mainly get abdominal pain and vomit. Despite the fact that I haven't physically been sick, it is almost like a ritual that I HAVE to find where the loos are before I can relax. I don't want to sound like a control freak but I would rather know where they are than be ill in front of people.

I am also very conscious that people can tell that I am ill/have been diagnosed with a chronic illness as I DON'T want to be labelled by others who do not understand Crohn's. I lacked confidence at the best of times before I was diagnosed but it has really knocked me in that sense. I want to be able to go places and not worry about where the toilets are or if I'm going to feel ill and have to go home again.

Does anyone know what I am talking abou or have any advice on this? I feel like I'm paranoid everytime I go out and have often found myself asking where the toilets are if I myself cannot find them, almost in desperation to know that they are not far away just in case.

Sarah

I think you will find most Crohns paitents are the same I know I am.Peggy

Yes i agree with Peggy, Sarah, we are all on our guard when we visit anywhere new
and 1st things we do on habit is take a streetmap,or check signs for toilets.
I was lucky to be given a disability toilet key as well,just in case they were closed.

11 years of thinking where the toilets are when i was going anywhere, very life limiting i found, even stopped me enjoying going to the park wi the twins and our wee girl, it just about drove me over the edge, finding a clean loo was another story, lack of control ment i wouldn't eat if had anywhere to go, but sometimes that wasn't enough as if the bowel hadn't totally cleared when i thought it had then i would be hit with the urge to go, it got to the stage i would take a laxitive now and again just to ensure i could go out in the mornings, worked ok for me, hope things settle soon for yi sarah

chasa

Thanks guys, now I know I'm not going crazy! I seem to be feeling fine after finishing taking Budesonide for three months, and am looking forward to a weekend with my husband and step daughter also planned a surprise visit to the theatre for his birthday tomorrow! hopefully it will be a nice surprise....

Yeah im another that does the toilet thing!!

Many, Many Crohn's patients feel as you do Sarah.  Think of it like knowing where the EXIT is, in case of fire.  My family members were always on the lookout for me, every where we went.  Try not to let that keep you from going anywhere.  
I understand not wanting to share such a dreadful disease that some won't want to know about anyway.  But, your friends should know about the disease and your symptoms.  They should be your support group!    Hang in there.

hey sarah
i feel exactly the same. I wnt through a phrase early on when i was diagnosed of taking imodium so i knew i wouldnt have to go when i was at a friends house or on a night out, anything that i would find embarrassing. thankfully i dont do this anymore as obviously its quite bad to do but yeah you are definitely not alone. it just becomes a routine to scope out the toilet before putting your mind at rest.

hi sarah, just to let you know that ihave also been through the same thing regards the loo , im also a lucky one as have radar key but i got mine through being unable to walk well and use a wheelchair sometimes or two sticks . have you heard about the card scheme for allowing you to be able to use the toilets in shops  and to get in front of queues not all shops participate but!!!!!! u get radar key through the local council.

Buzzyb,  would you explain the 'radar' key and what it is actually for?  I'm from the US and have never heard of it.   You mention getting it from the local council, is that your local 'city' government?  Do you have public restrooms everywhere?    Also please explain the card scheme.  
I would love to share this information, it may help us here.  Or at least possibly get a program started.    
I think the CCFA has a card to carry for emergency toilet use.  

Thanks so much,
Crohnsproof

hi crohnsproof in uk we have specific disabled toilets set apart and the disabled are given a key one key fits nearly every lock they are in malls, bus and train stations even in some pubs and clubs all over the country plus the card is an " I CAN'T WAIT " card and asks please could i use your rest room its urgent because i have a medical condition that means i have an urgent need it is not contagious . so far there are a number of shops that allow you to use their facilitys in an emergency also can be used to jump the queue in public restrooms. ps yes i mean local goverment office . hope this is of some use

Are the disabled toilets labeled generically?  One men, one women?   I seem to understand that they are kept locked and not available for the 'general population'.   Are they kept clean and maintained?  
That sounds like a fabulous idea.  We do not have 'public facilities' available.  For instance, in our small local mall, you are at the mercy in finding a restroom available in each store.  Some allow public, some are for employees only.  However, I have found that most of the grocery stores have facilities and of course Wal-Mart.  

But, it would be great to have something more readily available.  I absolutely love the 'locked' concept.

Thanks so much for the information.  

hi they are locked but they are unisexed and the ones i have used are usually clean and hourly checked and only for those in need thats why you have a key so you dont waste time looking for some one  coz that takes up time . as ive said its great and you never have to pay as some usually pay 20 pence to use some facilities thats to pay for permanent cleaner but disabled ones always free and rarely have a queue  

I did find the web site for the Radar key.  This is absolutely the best thing.  
I hope to do more research and write a little article on my blog.  Many Thanks.  (Yakoke)

Good morning to you all,
I had my colonoscopy on sunday just gone, and ever since i came home i can not keep of the toilet, if seems like what i thought was calming down, has now started all over again, can anybody tell me, is this the reaction to the scope, or is this another flare up. Sue

Ps Also i have the same thing has to where the loos are, i wont go anywhere where ive not been b4 because im not sure where the loos are. We recently went to somerset for our holidays, and months b4 we went, i was on the AA website find out how far apart the service stations were, i needing this information for me to be able to make this 4 Hour  long journey. Sue

Good morning to you all,
I had my colonoscopy on sunday just gone, and ever since i came home i can not keep of the toilet, if seems like what i thought was calming down, has now started all over again, can anybody tell me, is this the reaction to the scope, or is this another flare up. Sue

Ps Also i have the same thing has to where the loos are, i wont go anywhere where ive not been b4 because im not sure where the loos are. We recently went to somerset for our holidays, and months b4 we went, i was on the AA website find out how far apart the service stations were, i needing this information for me to be able to make this 4 Hour  long journey. Sue

Hey there!  Most likely the diarrhea is caused from the 'cleaning out' process.  When the cleansing is done, it has removed all of your good bacteria that you need for good digestion.  I recommend using Probiotics to build your gut back up.  You can get a lot of cultures from yogurt. Look for Activia or other products with live bacteria.  It tastes very good and is food for you.   At the same time, cut back on your acid type food and drinks for a while.  Good luck.

Thank you crohnsproof, i only drink flavoured water, and im barely eating anything, i live on toast and paste cause its the only thing i can keep in, ive found in the past that dairy makes me worse, so really dont fancy taking the activia, still waiting on biopsy results, so still not started medication, hopefully when that starts i will start to feel normal again. Cheers sue

I'm so sorry.  That happens to me if I don't keep solid food in my system.  The stomach and bile acid produces even if you don't eat anything.  You need a little something in your gut.  Try toast, rice, applesause, and the yogurt.  I'm not a fan of yogurt, but it does help.  Drink lots of water to keep hydrated, and try popsicles.   No sodas, or citric acids like orange juice.   I also like plain jello with canned whipped cream.   I'm dairy sensitive also, but I'm able to eat the whipped cream.   I know it's weird, but eat person has to find out through trial and error what works for them.  
Hang in there and keep me posted.  

Hi crohnspoof, i tried the activa, and up to now ive not been sick or the other, so ive had another one this morning, may be its working on the lining of my tum, like you said thank you for the advice, anymore throw it my way, ill try anything, im at the desperation time at the moment. Ive also become very tired and very weepyand down with it all, im sure this is due to still not been given medication, i keep saying wait till i go on that then ill be back to my normal self, heres hopeing Cheers hun Sue