Hello Everyone my name is Julie and im new to the site. I have had Crohn's diease now for 13 years and when i was first diagnosed I ended up very quickly having a rightside iliectomy i think thats what its called where they chopped a large part of the small intestine and stitched it back together been fine for a good 10 years but over the last couple of years its been very unpredictable im fine one minute then crappy the next this disease does my head in I feel i have no control over it at the moment which frustrates me. I would like to know how other people deal with it on a day to day basis such as socialising etc
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How do people feel about dealing with Crohn's disease on a daily basis such as socialising etc
- Thread starter julie mounsey
- Start date
Hi Julie,
Im interested to hear how others cope too. I have relatively mild crohns (they think) but the symptoms do end up controlling my life, esp when it flares up and I have to do the school runs etc.
I have a handful of close friends who I can call on (one of which is a GP, which is great as she does have an understanding of IBD and looks out for me on my bad days). I have only told immediate family as we have some gossipers in our family and I could do without that!
Days like today are the worse. Was hubby's birthday, but I spent most of the time on the loo when I should have been social with his family.
I'm afraid I am struggling on a day to day basis too but want you to know you are not alone!
Im interested to hear how others cope too. I have relatively mild crohns (they think) but the symptoms do end up controlling my life, esp when it flares up and I have to do the school runs etc.
I have a handful of close friends who I can call on (one of which is a GP, which is great as she does have an understanding of IBD and looks out for me on my bad days). I have only told immediate family as we have some gossipers in our family and I could do without that!
Days like today are the worse. Was hubby's birthday, but I spent most of the time on the loo when I should have been social with his family.
I'm afraid I am struggling on a day to day basis too but want you to know you are not alone!
I just take each day as it comes really as no matter how much you try to cope, some days a win is unrealistic.
nogutsnoglory
Moderator
It's very hard and I know that I lost many friends and aquaintances due to this disease. My real friends understand my last minute cancelations, my need to pick the places we go and care about me. It's very tough but it's often day to day, hour to hour for me and I can't plan ahead I just have to live in the now.
I try to be as honest about it as I can, but I only share the information that I have CD if people ask, because frankly I feel like they should care enough to ask to get an honest answer. Yes, they may not understand, but sometimes just telling them makes me feel more at ease. I am new to the diagnosis, as I just got it in late July/early August, but I struggle most with it at work as a retail manager. Some days are just fine, but some days are full of pain and a medication fogged mind. I just have to take it one day at a time and be my own best advocate. I know that my friends and family that truly care about me and how I am will stick around, and if they are true friends that they will be there for me whatever I am going through. It is tough having a chronic illness, but I think we all learn something each day from it, and we grow to be stronger people mentally, emotionally, and sometimes physically.
Thank you everyone for your feedback.
For me personally i find it hard sometimes when the disease takes over and my family dont really understand although i think my sister has an idea since she saw me at my worst one day and saw the pain and discomfort i was in that now she accepts it when i say im not feeling to great today but most people cant seem to understand because im a very strong independant person with a bubbly personality and i dont like people to see me when im bad so its my own fault really i suppose. I also look so well which is something everyone says as well they want to see me when im bad lol look like ive just rose from the dead ha ha .
I also dont have a partner right now and feel that I wont ever find someone who will be able to deal with my illness which does get me down sometimes.
For me personally i find it hard sometimes when the disease takes over and my family dont really understand although i think my sister has an idea since she saw me at my worst one day and saw the pain and discomfort i was in that now she accepts it when i say im not feeling to great today but most people cant seem to understand because im a very strong independant person with a bubbly personality and i dont like people to see me when im bad so its my own fault really i suppose. I also look so well which is something everyone says as well they want to see me when im bad lol look like ive just rose from the dead ha ha .
I also dont have a partner right now and feel that I wont ever find someone who will be able to deal with my illness which does get me down sometimes.
having more going on than just bowel issues and generally feeling unwell the whole time I find staying at home easier then socialising and prefer to go out early each day usually after rush hour find I try to avoid busy times of day and going out at night I was quite out going once life of any party
I can really relate to the un-predictability thing...
I sometimes dont understand how this can be; I may be OK and 24 or 48 hours later to feel like shit. :ymad:
It came down to :
- My few real friends know that in such cases I may cancel on them last minute, they fully understand and supportive. They also dont mind to set a tentative meeting etc.
- Others, I dont really care. If they understand great. If not, I cant explain that to them.
For me the problem is how I treat myself. I sometimes get angry with me that I am so non-consistent and so on.
Today I am better at handling that and I try to recover as quickly as possible. I leave everything at its position, cancel all meeting etc. and get back to all of that once I am better.
It does limit your freedom.
But it cuts a lot of the bullshit.
I sometimes dont understand how this can be; I may be OK and 24 or 48 hours later to feel like shit. :ymad:
It came down to :
- My few real friends know that in such cases I may cancel on them last minute, they fully understand and supportive. They also dont mind to set a tentative meeting etc.
- Others, I dont really care. If they understand great. If not, I cant explain that to them.
For me the problem is how I treat myself. I sometimes get angry with me that I am so non-consistent and so on.
Today I am better at handling that and I try to recover as quickly as possible. I leave everything at its position, cancel all meeting etc. and get back to all of that once I am better.
It does limit your freedom.
But it cuts a lot of the bullshit.
I don't really have friends anymore, all showed their true colours. I don't mind so much though as I like my own company. Funnily enough I've had someone ask me a few times recently to do something and I just couldn't force myself but feel I'd be better takling to the wall than try and explain. I hate being put in a position where I have to justify myself or explain crohns. Needless to say he's in the huff now.
I'm single and can relate to being worried about finding someone who can accept that I'm going to be ill at times. Almost accepted it's never going to happen and that does bother me a little.
I'm single and can relate to being worried about finding someone who can accept that I'm going to be ill at times. Almost accepted it's never going to happen and that does bother me a little.
Oh thats a shame, I understand how you feel in this situation, I think you would laugh if you could see me explain myself cos i have a few health issues not just Crohn's disease i also have a bad back had two ops and diebetes on insulin and sometimes its the way you come across i always kinda of say in conversaton something like well i have a couple of health issues but hey ho i deal with them i have Crohn's disease do you know what that is and sometimes they say oh yes its bla bla and some say no so if they say no i always say well its inflammation of the digestive system and can be very painful at times I keep it lighthearted and let them take it in then if they want to know me better well they will find out wont they if not i havent lost anything and just enjoyed the date for what it was because i think i need a special kind of guy and there is one out there but in the meantime like yourself i enjoy my own company and i have a couple of close friends who understand
During the times I had problems in the past my usual reaction was only concentrating on studying or work as that was strenuous enough. During the last few years when things were good and before during phases of remission, I did a lot of stuff with friends in my free time. I, however, very much understand the limitations of socializing when having problems, ... The good thing is I have very good relations with my immediate family, so always had their backup.
That's what I call a real gift from life.
I find it can be really difficult. I have been flaring badly since April and have had to cancel many plans with friends and miss quite a bit of work. My friends luckily have been quite understanding and supportive which is so lovely and my family is very helpful as my dad has crohns and my mom has ulcerative colitis so everyone understands and helps each other out when needed. I find the worst thing is how I feel about myself whenever I can't do something I said I would. It makes me feel like a bad friend, employee and member of my family.
Hi every1 my names Erin and I've jus recently been diagnosed with crohns , it does my head in too it jus depends on the day really! I've had to give up loads of foods I've literally lived on my whole life, could cry watchin my family n friends eatin a Chinese lol...I jus take it day by day n avoid the foods that flare me up !