What social life!?

Anyone else find that having IBD has made a major dent or destroyed their social life? I find making plans and going out so difficult as I don't know when I will be feeling ok and when I feel like I just want to curl up and die! I hate letting people down all the time and feel like I miss out on lots of things because I'm either in too much pain, running back and forth to the toilet or too tired!
Just wanted to know if others have this problem and how not to let it get you down.
Thanks Abby

My son has almost no social life and he is 18.

It's super hard, you discover who really cares for you. I plan things so I know where the toilets are (trains, at stations e.t.c) I take spare undies or wear pads. I make sure my friends know it's a maybe and confirm on the day.

Sometimes I've thought fudge it I'm carrying on (my partner is fantastic, we went on a surfin holiday and I on occasions would have accidents, he knows to carry change for coffee shops so I can run to the loo and clean up while he ordered drinks).

Recently I've stuck to staying in and having people over which helps, I'm usually better in the afternoon so plan things then. I hope this helps, I have no more shame I have had so many accidents, I just clean up and carry on and optimise pain relief, I also try to work out what upsets me (although right now it's everything, so understand that's tough)

Sorry to hear about your son Lenny, I'm 24 so luckily got to have abit of a social life. People who are struck with IBD I their teens get my deepest sympathy!
Thanks for the reply Sarah- it made me smile knowing that you have so much support!

@abbynormal I'm 24 too! Ever since my Crohns got out of control last spring I'm always having to cancel on everything and me and my husband and toddler rarely get out. I've just learned the hard way that you have to be honest with people from the start that you can't really commit to anything until you're better. And do lots of fun things with people you love at home! We've watched so many movies over the last year!

Elizajp said:

@abbynormal I'm 24 too! Ever since my Crohns got out of control last spring I'm always having to cancel on everything and me and my husband and toddler rarely get out. I've just learned the hard way that you have to be honest with people from the start that you can't really commit to anything until you're better. And do lots of fun things with people you love at home! We've watched so many movies over the last year!

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Definitely agree on the movie front, most afternoons are spent watching films with my little girl

I find watching movies you can't go wrong! I just miss all the things I would do and still want to do that I haven't yet- I'm too scared to book a holiday incase I'm ill and then it's just ruined! My friends like going on nights out drinking and going for meals and I can't do that anymore and I'm just so tired to want to do anything else anyway!

I found asking family or (our close) friends to our house on the occassion I don't feel as bad as most days. We'll order pizza or something for them and I eat food I can eat and hopefully not be running to the bathroom. We'll visit or watch a movie. Sometimes they'll bring food for themselves - at least I don't feel as lonely and more comfortable at home. At times I just lay on the couch and we visit - nice to see people come over when I'm up to it.

Otherwise, we would do absolutely nothing and have no social life. Hopefully you can enjoy people at your house and put a smile on your face. :ylol2:

We have another family member who was diagnosed at 24 and also went into remission at 24 on the SCD diet. She was given Prednisone, which put her into remission and the diet has kept her there for nearly 10 years!

We tried the diet for our son, but it didn't work. There symptoms were so different, he was constipated and she had diahrrea. His symptoms built up slowly, over years and hers was instantanious..nothing alike.

I basically missed a social life from 19 - 30. I agree, it is really difficult. Maybe keep a log of when your body cooperates with you and when it doesn't and then use that to schedule your appointments. Best advice I can give is to do as much as you can when you can. It will help breed confidence for you at a time that you need it just to feel reasonably normal. Hope all works out for you!

You just have to plan ahead and if you've got understanding friends they'll be okay with you bailing out or cancelling at the last minute. If they're not then well, are they really your friends? I've ditched a few because they started to moan about me cancelling on them. Tough, guys. You got a problem, go and find a friend who isn't ill then.

As for holidays, just go ahead and book them. The whole point of them is to relax so you'll probably find you're okay. Unless you want to do an adventure holiday or something - my holidays are usually city breaks with plans for shopping, museums, more shopping, eating, shopping, more museums and did I mention shopping? You can always just bum around the hotel if you're feeling crummy. The first day of any holiday I go on is predominantly doing nothing in either my hotel room or the hotel bar. Take a good book!

Thanks for the great responses guys
I'm feeling abit more positive about still be able to socialise and lead a normal life, suppose it's just difficult when people don't understand.

Hello abbynormal,it gets better!holidays are fine just need a bit of planning if your worried stop it makes it worse,go somewhere close,Benidorm is very handy for us Brits and prep before the flight you,ll.be fine.all the best good luck