Hi all,
Im new to this community. As you can see from the heading; my son was just diagnosed. Still running tests to determine which kind exactly. Can anyone give me anyreal life advice on what to expect in terms of day to day living with this desease and possible treatments,nutrition,etc.
Things ive read on the net are extremely scarry.
Thank you.
Izabella
Poor him Izabella and poor you too since you'll be supporting him.
I have Ulcerative Colitis which is very similar to Crohn's and was only diagnosed in February so am still learning.
There's lots of support and advice on here and I know someone will be along very shortly to help you and your son.
Good luck to you both x
Hi Isabella, I have Crohn's and was daignosed last May. It's an awful disease of that there is no doubt and reading about it can be very frightening to start with. Especially when you're trying to be as informed as you can be about it. When the disease is active it makes you very tired. That alone is so debilitating, you can't always join in with others. It can affect your mental health, anxiety and depression. Knowing there is no cure is scary. You have to come to accept the Crohn's to be able to move forwards. I had to anyway!! I didn't want too!! I felt I couldn't and I wouldn't!! But eventually I did. It's a nasty little beast but!!! With the right treatment you can have a decent quality of life and get into remission. You have to look after yourself too!! Don't forget about you in all of this. Your son may suffer a lot of pain at times. He will have to work out what food works ok for him. A food diary is good. He needs to keep active as that helps as in walking. Something gentle to start with. Meditation is a saviour for me. It would help you both I'm sure if you ever tried. I'm taking Humira at the moment and I'm always happy to help you if I can. I know it's heartbreaking for you to see him with this but you will both get through it and another important thing is making other people realise he's not being anti social if he can't join in it's because he just can't. But there will be times when he can. I think it would be a good idea to arrange some counselling for him because he's so young. You can feel isolated too because he may not know anyone else with it x
Hello, I am sorry to learn of your son's diagnosis...It is so hard for young people to talk about bowel problems I find.
My son was diagnosed at age 21 after a lot of rectal bleeding. He has Crohns and Colitis which just means the disease process is full thickness and the whole length of but in his case.
His treatment on diagnosis was a course of strong steroids to get things under control....Which it did ...10 days in he was so much better.
Then a few drugs were tried to find the best one for him and he also had more steroids over the years for flare ups.
He has travelled to Eastern Europe lots of times, worked in France and Germany been crew on yacht deliveries to Morocco Greece and Italy oh and got his degree at Aberystwyth University .
He does not let it stop him and has been lucky to keep things under control. He has an amazingly helpful IBD nurse ( male ) who he can contact anytime and good consultants.
There is no special diet as such that suits all but we did an exclusion diet to see if we could find triggers....It turns out in his case avoiding wheat and dairy is best.
When travelling he eats very bland foods like rice or carries his own dried gluten free pasta and can eat tinned tuna. He drinks very weak coffee black.
Obviously it is better not to restrict any food group without good advice from a Dietician or Nutrition expert. He avoids spicy foods in general but turmeric has actually prooved to be good for him.
The best advice I can give you is to keep a strict food diary for maybe 2 or 3 months, noting down everything....And I do mean everything that passes his lips then each evening or next morning write in how his symptoms have been...Good bad non existent with any comments.
That way you can look back each time he has a bad day and see if he ate the same or crank the same and had the same symptoms. Worth the work in my opinion.
The worst thing now for my son 16 years on is fatigue, it is awful to see him so worn out at times that he goes out to work at 8am only to be back in bed at 10 am. That can last a day or sometimes a week or two.
You may find no foods affect your son, I hope that's the case as being 15 it will be harder with peer pressure to avoid pizza or whatever.
My niece has been less lucky, she has had 5 surgeries for her Crohns but having said that she has also become a mum to two lovely girls and leads a full life.
I do make sure my son has a supply of a good quality multi vitamin and mineral supplement just as insurance....And when he needs to rest he has no choice but to do so.
The Crohns and Co!itis society have good info for teachers,employers etc so you can access written info for your son to give to others if he doesn't feel like talking about this ( also a Can't wait Card ) he can show to shop assistants, restaurant staff etc if he needs to access facilities urgently. My son also carries spare underwear as the odd accident can still happen so a little discreet packet of wipes and a spare pair of pants are a good idea.
Of course now my son is older and drives most places he carries a rucksack in the car with extra,s.
All of this sounds daunting but rest assured getting the diagnosis is a good thing....As long as he is honest with the IBD team even if he doesn't want to discuss all the details with his mum !!!
Without a diagnosis and treatment there is a much greater risk of serious surgery so you are already on the better path.
Wishing you and your son all the best for a pain free future on this journey.
Ell
Please don't read the stories on the net. Talk to others who are going through it or There is a Chrones helpline it should be on here somewhere. Due to having Diverticular disease I see others at the "Digestive disease unit" at my local hospital they go through similar treatment as I have ie diet blockages operations etc, most I speak to live normal everyday lives albeit not so active. Too many horror stories on the net
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