Recently diagnosed with crohns
Posted , 4 users are following.
Hi,
I was recently diagnosed with Crohn's disease in December 2016. I'm 19 years of age and finding it hard to cope with coming to terms with my condition. Since being diagnosed my life has spiralled out of control I've lost friends and my boyfriend due to them being unable to cope well with my problems. I've also lost 3 stone and am struggling to put any weight back on. I was diagnosed depressed in April 2017 and put on anti depressants. I've just recently lost my job 4 weeks ago and I'm unable to qualify for PIP OR DLA. I'm not well enough to work as I can't stand on my feet for more than a couple of minutes but still don't qualify for any other form of money. I've also been kicked out off college due to absences despite having this illness. Is there any advice anyone could give me please? I've been to my IBD nurse for one on one discussions and have also been assigned a counciler but am still finding it hard to cope with how everything is going. Thanks
0 likes, 3 replies
Alfielefoo Demi123ax
Posted
Im sorry to hear youre struggling so much.
You could appeal pip if they turned you down and you could apply for esa (i admit i dont know much about )
Its early days and it takes time to accept any illness. Its not helped that you feel youve lost everything else.
Easier said than done, but try to take each day as it comes. This frantic world website was recommended by our practiceanurse.crohns colitis uk have information about benefits etc.
You can also speak to the college about additional needs assessment.
If youre unable to stand, id seeyour gp to check whats going on.
Dont forget theres the open universityuand other unis which offer home study.
Have you spoken to your family?
Take care of yourself, and im sure a few others here will reply too and they all have useful info.
UKMattG Demi123ax
Posted
Hi Demi,
?Everyone's experience of living with IBD is different, as is (just as important) coming to terms with the diagnosis and fundamental change to your life. It certainly does rock your life, and at 19 you're still very much growing into yourself and living your life. It really must be tough on you and it's so important to recognise that, allow, and slowly try to accept where you are.
I was finally diagnosed after many years at the age of 35 (around a year a go) and for many years prior I tried to bury all the difficult emotions. Counselling made me realise that friends come and go but your true friends will be understanding and continue to be there in the tough times. That said, no one can truly understand what you're going through other than those who have been through the same. Counselling can also help come to terms with not reconising your life versus a year or two ago. I felt I'd lost my youth and wasn't good for anything but that's slowly changed. Around the same time I stumbled upon a movie with a quote that I remember from time to time - a retired Michael Cain asks a doctor "what waits for me outside of here" and the Doctor replies "outside of here is your youth". Your youth is there but it will take time to truly grasp with both hands. Depression is perfectly acceptable given everything you've gone through - be kind to yourself and accept that life has been sh*t but that better days are to come. - hard to see but there are many success stories of turning things around, hard to imagine I know - but many went from life threatening health to a happy managed life.
?Crohns & Colitis UK is a fantastic organisation and I highly recommend you call them to discuss your experience. They offer emotional and practical support e.g. advice in benefits. They also hold invaluable (I'll repeat that *INVALUABLE*) monthly meet-ups in many locations where you can talk to other's with IBD in an informal situation - many of which have been through the same with many testaments to how bad it can be but how well they manage now and the full lives they lead. It truly gives hope and perhaps a little bit of hope will help you in these gritty times. It's also great to get things off your chest and there's no shame if you need to dash to the loo or are feeling blue.
?The level of support you've received e.g being denied PIP or DLA sounds horrible. Can your GP or consultant offer you more support? sounds like perhaps you need a course of steroids to get you back on your feet. Have you been referred to a dietitian or prescribed an enteral diet (liquid nutrition drinks)? Again - Crohns and Colitis Uk have lots of info on all areas. They've just launched their companion site (search Crohn & Colitis UK Companion) which is good for recently diagnosed IBD, and for your friends and family.
?I'm no expert - but appeals processes would be good to explore as Alfiefoo has replied. That's on the benefits front and with your college. Crohn's is generally seen as a disability and they have to be careful not to discriminate. The Citizen's advice bureau may also be able to offer practical advice on your ability to claim benefits and remain in education.
If there's anything in particular you want to know - just message on the forum. It's a mine of information!
Keep in contact and feel free to vent - we're all in it together.
?Matt x
patricia86015 Demi123ax
Posted
It just sounds to me that you need to see your hospital consultant again. Your GP should be able to arrange it. There are meds and surgery that can get you a lot better than you are now. Then you will be fit enough to resume work or college.
All the best.