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Newly diagnosed crohns

6 replies

Y1986 · 23/05/2019 16:30

Hi

I had a phone call from my consultant earlier today to discuss results of my recent CT and bloods and he has diagnosed me as having crohns. I'm so devastated and haven't stopped crying since I got off the phone two hours ago. I know it could be so much worse me I'm probably overreacting! Any advice for newly diagnosed? I'm having antibiotics to treat and infection now and will be having a scope and biopsy soon x

OP posts:
HitthefloorforTaintedLove · 23/05/2019 17:08

Hello Y, just to say you'll have had a big shock and your reaction is to be expected. Have a good cry and when you have, maybe one of the people with Crohn's on this thread might be able to give you some practical advice or hope!
www.mumsnet.com/Talk/general_health/3582630-worried-bowel-problems
💐

Y1986 · 23/05/2019 17:45

Thanks so much for your kind message. I'll have a look on this thread now x

OP posts:
tryingtobebetterallthetime · 23/05/2019 17:52

I am sorry to hear about your Crohn's diagnosis. I have had ulcerative colitis for a long time. I have cried too.

I will not sugar coat things. You will have some hard times, but you have been diagnosed at a time when treatments are much better than they used to be. There are also lots of resources out there to help you. I know people who were miserable when diagnosed but got better very quickly with treatment. There is lots of hope. There are amazing medications that can make a huge difference.

I know that right now it feels overwhelming, but at least now you know what it is and can work with your health care providers to manage it.

Learn all you can. You will need to be the leader of your team as you know your body best. Don't let others blame you for your disease by commenting about your diet etc. if diet was the cause ibd would have been cured years ago. It is not your fault.

Keep a diary, especially at first. A food diary can point to foods that are irritating. For example, spinach really bothers me. One thing I urge you to do is avoid quackery. It is rampant. Everyone knows the perfect diet, the perfect supplement etc. I have tried so many diets and supplements I could write a book. None worked for anything but draining my wallet (or starving me). For most of us, a simple, clean, and basic diet works best. When flared stick to low residue (low fiber). I eat mostly lean protein, rice, mashed potatoes. I cook all vegetables until soft. I know this sounds wrong but it is much easier to digest.

For now, be gentle and kind to yourself. Don't push too hard. Fatigue is a huge issue with ibd, the type of fatigue that makes you feel your legs are full of concrete. Advocate for yourself in an assertive way. Get the help you need, both physical and mental/spiritual.

Hang in there. It will get better. You will learn and adjust. ThanksThanks

Y1986 · 23/05/2019 19:33

Thanks so much your lovely words made me cry all over again.

I've been obsessing over what foods to eat and avoid so I'll stop that now and start a food diary.

I'm really struggling with the fatigue I was putting it all down to an active toddler but I'm going to focus on getting some more rest now.

Thanks again for replying x

OP posts:
StillMedusa · 23/05/2019 23:47

My DS2 (21) was diagnosed with UC a couple of months ago. He was pooing blood up to 20 times a day and was very unwell.

A few months of Pentasa tablets and Salofalk enemas later (which I have to do as he has autism) and he feels and looks a lot better. Not in remission but nevertheless a lot better.
We keep a poo diary... how often he goes, if there is blood/pain and what it looks like according to the Bristol Stool scale, so we know how well the meds are working.
I've actually made his diet less healthy as the veg was going straight through him so we have concentrated on more lean protein and carbs, though he still ploughs through fruit as that is his routine.

His life is a lot better than it was 6 months ago!

It's a nasty illness but IBD is controllable. You should be referred to an IBD clinic and have a nurse and they are generally very helpful. Once on meds you should start to feel a lot more human!

BusterGonad · 24/05/2019 07:14

I'm so sorry to hear this op, I have crohns and somedays it's down right depressing and others I forget I e even got it.
Yes to boiling your vegetables until soft, soft foods are what's best, and yes to ignoring anyone with helpful advice, unless they have crohns or are a medical professional then they've not got a clue.
You will have dark days where you are chained to the toilet bowl and they are so so depressing but hopefully few and far between.
The fatigue is a killer, I can't help with that tbh, you do get used to it, just rest up if you can.
Foods I avoid (which may or may not upset your insides)
Popcorn
Salad
Raw veg
Nuts
Spiced food
Too much proper coffee
Too many peas/sweet corn
Whole grains
Muesli
Dried fruit
Good luck op.

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