Hey! Need an Extended Family!....

Hi Folks,

Firstly, how liberating and comforting to read your stories and posts. For over two years I have kept quiet on the day to day experiences of living with Crohns - even not admitting to them to myself. I have rushed headlong back into work following a 3 mnth hospitalisation and was so worried about this enforced absence that I have yet to take a day's holiday this year...

That is until now. My doc said to my last week that I have to take my foot off the gas and come to terms with my illness and manage it better. My fatigue is all encompassing, I am uncharacteristically snappy (losing several good friends along the way) and feel that my Crohns is totally enveloping me.

That said, this and other sites are helping enormously. It is very sad that I appear to be retrenching from the world, where once I was a social animal, gregarious and fun to be around, I have latterly all but drawn the curtains on the old me.

On top of it all, I have suspected Carcenoid Syndrome which is adding to my worries and I don't know too much about it.

I guess baring my soul on here is part of my receovery and management plan. I want to be able to share and learn from you good people, many if not most are faring far worse than me. I just don't want Crohns to subsume my personality, identity and zest for life and it's crept up on me.

Thanks for listening. Am sure that I'll become a regular fixture round here if you'll have me! Good health, good luck and good times to you all.

Al xxxx

hi Al, welcome to the forum, and thanks for your very open & honest first post.

Crohns can do all of those things you mention.. make us try & block it out & pretend we can keep the pace we used to, it can make socialising a chore or even stop you socialising at all, and yes it makes us miserable and therefore sometimes snappy too.

i think all the emotions you've described are feelings a lot of us here have had to deal with. i know at one point i was on a mission to prove to myself i still had a worthy life to lead, and threw myself into a very demanding and full time job. i managed to keep it for 12 months, but had to admit it was too draining on me, and i downsized to part-time.

regarding friends, i now have a small and extremely precious circle of friends, who make no demands on me - they know how things are, and are quite happy to come round while i'm slobbing in my pjs if that's the kind of day i'm having. on a good day i am still able to put on my glad rags and have nights out. i think its all about filtering out the fair weather friends from the genuine ones who care about you, and staying in touch with the latter kind - and being honest with them.

i'm really glad you found this forum - and am sure you'll get lots of support here welcome aboard!

In my eyes I am probably the least effected medically by Crohns, but I think it is impossible to compare and contrast your life with another's. I think the universal feeling among all of us is 1) the relief of it having a name and there by having the ability to manage and combat it and 2) the ups and downs we have all felt, feel, and will feel during the course of our diseases.

And THAT is what I have found this community is just fabulous at. It doesn't matter if your in remission, in the throws of a horrible unrelenting flare, or virtually symptomless. Because all of us has had it impact our lives sometimes for the better sometimes for the worse.

You don't have to keep quiet any longer. So welcome and don't be afraid to speak up!

Hi Al,

You are certainly not alone on the wanting so much and trying so hard to ignore your IBD! I keep fighting to stay in full time work and love what I do so very loathed to quit or reduce my hours yet even though for me I think that time will come due to more than my Crohns.

I also take Forceval and Ad-cal and am jealous of your odd kit-kat!! I totally understand your determination that Crohns doesnt consume your life. I have always said it lives with me not the other way round! Hang in there ok?

You are very right that "talking" about it here however does help to come to terms with the impact it can have. You will have understanding and empathy giving you a chance to use us as sounding boards.

Looking forward to seeing you post more Al. Just take each day as it comes and get to grips with things - you will get there believe me!