No matter how I try to explain the difficulties of living with Crohns, no one understands!?

Hi Jodie, I was diagnosed 20+ years ago and i still have more questions then answers. When I'm feeling very run down and feeling unwell I just want to either stay in bed our lie on the sofa my friends and family say thing like how can you be tired? Or your just lazy. It really does not help at all. Thanks Twiglet,

Hi Jodie I do understand, I have had Crohn’s for 12 years but only started to suffer with it 4 years into diagnosis, I had an op in 2013 and although I have been in remission since it left me with bile salts malabsorption which leaves me needing the loo far more than before the op. I have struggled to deal with the impact it has has on my everyday life, I think it is like any illness, you think you understand and sympathise but you don’t really know unless you have it. I used to have chronic depression/anxiety which stopped me doing anything for fear I would have a panic attack and I feel like I have returned to that scenario except I am now happy to go and do things but fear of needing the loo dominates everything. I usually say to well meaning friends that it’s like going out when you have gastro only it’s everyday. I try and get on with things as normal and try not to dwell on my limitations or moan to friends about it and if I’ve arranged an outing and can’t make it because I am not feeling comfortable then I just say my tummy is playing up and leave it at that. I know I am lucky because it could be so much worse, Crohn’s is different for everyone and it is easy for non-sufferers to gloss over a ‘tummy upset’. I had never heard of it when I was diagnosed but I hear of it all the time now. If your friends are interested they can google and read up on it, I try and educate my friends if they ask about it but if you don’t look sick it’s hard to make them understand. I have friends who need to be gluten free and I don’t really understand that but I do know they’d be terribly ill if they consumed it and it is a nuisance for them eating out and food shopping but like us it is for life so we deal with it. I am sorry you feel under-supported and sometimes people can be insensitive, especially when you are not in a flare up and can function normally. You have your sister and family who understand, it might take your friends a little longer to grasp the impact of this horrible disease, I wish you well.

Hi, sorry to hear your story and suffering.  I suppose I am lucky with my illness as both my Mother and Father suffered with it later in their lives and my young brother has suffered for many years and he is 55 now and I was diagnosed with it in 2011 when I was  56. The only person not to have it in my family is my older brother and he doesn't understand at all.  Needless to say my younger brother and I have nothing to do with him (there are other reasons as well but I will not go there).  I am fairly lucky to have a step daughter who is a nurse and many of my CLOSE friends have medical knowledge (because of their professions) and they fully understand.  Any friends who cannot get their heads around our illness are not friends and you would be better off without them as they are causing you stress which you don't want with this illness.  There are local groups that you could join to get to know people with the same problems and that helps an awful lot. Look at www.crohnsandcolitis.org.uk. There is alot of helpful advice and it will show you you are not alone in your suffering.  You may well get to know people from your local area with with the same problem.  They also have a presence on Facebook which is also very helpful.  Surround yourself with people who care about you and ditch the others, because they are not friends. !!  Good luck and hope you feel better soon.  

Hi Jodie as you're finding out your feeling of isolation is one that many of us share and have to deal with constantly. Crohn's and UC are not like other diseases and people can be ignorant and insensitive unless they have first hand knowledge of these conditions. Like many (lucky) people my flare ups can be separated by quite long periods of recession when I still suffer from fatigue and lack of focus/attention but free of the worst acute symptoms. At these times you have to be aware of discrimination but also understanding that by tomorrow you may be wracked in pain and bed or toilet bound. Good luck from Pete W