How do you tell people you have crohns?

[chloelou91]

Hello! I'm pretty new to this forum scene but I have decided to seek advise from people that are dealing with this disease and have more of an understanding of crohns than me.
My name is Chloe, and I'm 21. In 2009 I started loosing a lot of weight. I didn't think anything of it to be honest. I was more happy that I could fit into size 6 clothes than think about why I was loosing weight. but as the months went on, I found myself being sick at any given moment. Or rushing for my life to the toilet. I started getting extremely bad stomach cramps, to the point I would just double up on the spot. I'm one of these people that refuses to go to the doctors, so I just keep dealing with this pain until, I had to leave my job due to the state my body was in. I was 5 stone and there was blood coming from somewhere, no blood should come from. After 7 months of tests, January this year I was diagnosed with Crohn's disease. But since finding out, I have found it difficult explaining to people what illness I have. Trying to explain to friends or someone who I want to have a relationship with that I spend most of my day on the toilet is so embarrassing. Should I just man up and deal with the fact this is now me or is there an easier way of slipping into a conversation that my normal past time is going to the toilet?

 

[Angrybird]

Hello and welcone to the forum.

Unfortunately this disease can have some very embaressing moments to it, when I was first diagnosed shortly before my 17th birthday there was no way I was telling people that I had a illness that meant many trips to the loo. When asked about my skinny, pale appearence I would just say I had been ill and let them draw their own conclusions. Now over 10 years later I am at the stage where I have no problem telling folk (even people I am only meeting for the first time), if they have an issue with what this entails then that is their poblem not mine. To be fair most immediately get what this means and are very understanding and sympathetic. It did take time for me to get so accepting of this disease and I think everyone is different with how long it takes to get there and there is no right or wrong way to it, just what suits you. I always try to laugh rather than cry when things are bad and I always tell myself that it could be worse, I never want to feel like this thing has beaten me and stopped me doing what I want to do.

Right sermon over! More importantly how are you doing now tummy wise? Are you on meds and if so which ones? You will find there is a lot of helpful info and support here so do have a good look around

AB
xx

 

[SarahBear]

Welcome to the forum!

As time goes by, you'll probably become more comfortable with your diagnosis and less worried about what others think. For now, it might help to explain the disease in more technical terms, rather than by the symptoms. If asked what the symptoms are, I'm more likely to spout off the giant list of possible symptoms, rather than responding with what happens to me. I think most people will get the idea and accept it, without making you feel embarrassed or calling you out on it.

I honestly don't remember how I told my friends about my illness, but they already knew I had severe stomach pains - so they knew something was wrong. Being on Prednisone, and therefore super talkative, probably helped break the ice on the subject, haha.

I'm also wondering how you're feeling and what medicines you're on (if any).

 

[Pointy_ears]

Hey Chloe, I've had crohns for a while but currently find myself in a very similar position to yours due to surgery. But I'm getting back to a place where I feel things are ok again. So far I think you've been given some good advice. I'd just like to weigh in with a question and a suggestion! Are you under the care of a good GI and are you on any meds and do you feel they are working for you? If not I'd make sure you get your care reviewed ASAP! I'm a firm believer that crohns is made easier by receiving the right care.

Other than that all I can say is tell people when you feel the moment is right, you don't have to tell them all the gorrey details just as much as you feel comfortable with. Most people now know what crohns is on some level so sometimes to say you have crohns is enough.

I wish you all the best and hope everything gets easier soon, in the meantime if you need to talk or any advice then you've found the right place!

 

[chloelou91]

Thank you so much for your advise and support. Been so nice being able to talk openly about it. I was on prednisolone for 9 weeks with B12 injections but now on ferrous sulphates, pentasa 500mg and frolic acid tablets. Everyday is a struggle. And recently been having a lot of flare ups.

How's everything going for you two?

 

[chloelou91]

I have had difficulty finding a new GP due to moving area. When I was on prednisolone, I started gaining weight and has almost no pain. But since being on pentasa, nearly all my symptoms have returned

 

[Angrybird]

What symptoms are you still getting? How long have you been on tbe Pentesa? When do you next see your doc, are you able to get in contact with them to let them know you are still having problems? Are you still going to be having the B12 injections? It could be the Pentesa really isn't the right med for you tum and an alternative is needed - this only get used in mild cases and usually is not 'strong' enough for most people here.

 

[Pointy_ears]

Pentasa isn't the strongest of meds, have you discussed with your doctor the use of azathioprine or biologicals such as remicade? Also have you considered, trying some alternative therapies to help with symptom relief.

I know it's difficult but try to relax, crohns is aggravated by stress so keep smiling!