Anybody with crohn's fancy a chat? Just been diagnosed and could do with some company.

[IPlayMyGuitar]

JUst got my results today and the proposed treatment plan, all by letter so no chance to talk to anyone. Just wondered if anyone was around for hand-hold & to share their experience.

My auntie has this..

I dont - but i do have IBS
And colon polyps

Watching with interest

Keep ya chin up OP

Hi 30+ years with Crohns - it’s a lot to get your head around isn’t it!

Hi sorry to hear your news. First Crohn’s disease is not the same for everyone.
On line join the Crohns and Colitis site for all the information you will need. There is a lot more research and medication since I was diagnosed. Take control of your health and do everything to help yourself to be as healthy as possible. Find the best gastroenterologist in your area, if you’re not happy with your consultant find another one. They should be calm and supportive if not keep trying to find one that suits you.
Good luck.

Our son has crohn’s disease, he was diagnosed at the age of 9. We’ve found that the IBD nurse specialists have been really supportive over the years. Your IBD hospital team will have an IBD nurse specialist.
Crohn’s & Colitis UK provide info and support.

Got a call with the nurse tomorrow, so that will help. Infliximab and azathioprine to start soon - 2 year course. That's a long time. Don't know when or if I'll see a consultant- is all been phone calls so far.
I'm 58. But had it for a few years I think.

It seems to be so variable.
Thanks to all of you for replying.

Of love to know more about diet. Particularly mushrooms, which I love but crikey do I pay.

@IPlayMyGuitar my sister and I both have Crohns. Neither of us have had any issues with food or drink - can eat or drink anything with no issues.
She has had loads of operations due to Crohns - i haven't had any.
She got constipated, I got diarrhoea.
She is a size 6, I am a size 16.
She takes a few medications, I only take 1.
She has vitamin b12 deficiency, I have pernicious anemia.
It's all so variable it really is.

My mum had Crohn’s - she was diagnosed with it aged 11 when hardly anyone had heard of it - she lived to 71. She had a lot of surgeries as this was before a lot of the modern day immunosuppressant drugs. In fact she ended up with only half her bowel remaining but she was absolutely adamant she didn’t want any sort of stoma bag. Looking back I think the quality of her life would have been hugely improved if she had had one. But she was always worried about the (how she perceived it) stigma attached to it all so fought tooth and nail with the consultants that she didn’t want one. In her later years they kept trying her on various immunosuppressive medications but she hated them all and said they just made her feel unwell so she managed it through long term steroids (which in turn gave her adrenal insufficiency- I also have this myself and lots of other autoimmune issues, they tend to run in families). The best quality of life she had, even with her very severe Crohn’s, was through taking prednisone 10mg daily and Cocodamol.

She eventually became so fed up with consultants and medical intervention that she refused to have any more routine colonoscopies or checks done and unfortunately that meant bowel cancer was missed. She died 6 weeks after being diagnosed with bowel cancer which could have been prevented had she had her regular checks done. These are so incredibly important as Crohn’s unfortunately does carry an increased risk. I don’t mean to scare you and hopefully it will never be an issue for you but make sure you go for all your checks and appointments.

Thanks - that's great advice.

Does anyone know why they might have decided to put me straight on inflixumab/azathioprine and not started with steroids?

They try to avoid using steroids as much as possible nowadays because effectively they’re not good for you long term - they can cause brittle bones and diabetes and - most importantly (and not well known) the longer you take them for the more at risk you are of developing adrenal insufficiency (google Addisons disease - secondary adrenal insufficiency isn’t the same cause as Addisons which is where the adrenal glands themselves don’t work (I have this) but you can develop secondary ai with steroids which has the same effect, no or very low cortisol which can be fatal if untreated. You need to know if you have it when you start to reduce off steroids as it needs life long management and treatment with replacement doses of steroids).

They will do everything they can to avoid just using steroids now.

Thanks. The NICE guidelines still point to steroids as the first line treatment. So I was worried it was so severe they had to go straight to the hard stuff.

Are you in a lot of pain?

I am in a number of autoimmune groups and everyone I know with Crohn’s has gone straight to disease modifying drugs or immunosuppressants. So that’s interesting re the NICE guidelines. I think they do often prescribe a very short course initially alongside other medications but they try to move onto longer term drugs asap. I hope you can find something that works for you.

@Pigeonqueen having a stoma was my worst nightmare and when I was told I was getting one(cancer, not crohns), I thought of every and I mean every possible* *way out of it. Luckily I ended up too ill to consider other options because I absolutely love my stoma and wish I had gotten it years ago!

I’m so glad to read that ❤️ I think there’s a lot less stigma nowadays and of course the bags etc are better too. I think my mum would have had such a better quality of life if she’d just gone with it but of course that’s something I’ll never know.

The -mab drugs (monoclonal antibodies) have revolutionised the treatment of Crohns. Don’t think of them as ‘the hard stuff’ but ‘the stuff that should work really well straight away rather than faff with all the older meds’.

I had Infliximab/Azathioprine and it worked well for me. Now on Adalimumab (Amgevita/Humira) which is more convenient as it’s a fortnightly jab rather than an infusion. Has kept me in superb health for 10 years (after previous 20 years on a slow decline requiring 2 resections, a stoma and a reversal).

My DD aged 13 has Crohn's. She is just going into a flare having been stable on immunosuppressants for 2 years. It's a shitty horrible undignified disease but treatment options seem to be improving all the time.

There is some evidence that dietary additives - emulsifiers and gums in particular - are not great in Crohn's. They aren't the root cause - you have to be genetically susceptible - but they seem to be implicated. Eating as much non- upf food as possible seems sensible alongside the medication options.

I have been having Infliximab for over 10 years and it has been a game changer for me. After spending years in pain and bouncing in and out of hospital with awful flare ups I totally get why they have started you on that. Other than when I have stopped the Infliximab (pregnancies and trials without it x2) I have been so well since using it, I have a completely normal life with no flare ups.

Thank you so much - you have already cheered me up. And given me hope!

I've joined the C&UC society and looking forward to using my 'I have to poop' card. Are places usually OK when you show them?

Pain - is bad when I cramp. Continual low grade stomach ache round the clock.
Bad diarrhoea every day. Knackered all the time.

Do any of you find movement aggrevates it? As in walking or house work?

So sorry to hear about the kids with it. It must be really tough for them and their families.

One question about infliximab - can you self inject that, or will it always be a hospital trip?

For me at your stage they wouldn’t have given me steroids as likely just upping my meds would hopefully have brought it under control. Can’t think if movement ever made it worse- probably! I had inflixab for a year and it was monthly infusions at hospital. Humira was injected at home (by my DP - I’m too squeamish). I’ve never had to use my I need to poop card - but a radar key off Amazon for disabled toilets but in general I found I didn’t really go anyway whilst in a flare. DP has IBS and has more issues since he doesn’t get the good drugs 😀

And another question - I'm having lots of dental problems - could the crohns be causing it? Could it settle down when the drugs start?

My DD16 has it. She's been on various drugs and Azathioprine for a few years but now seems to be on constant steroids due to flare ups so is moving over to biologics. I'm hoping these will really help. She will probably do the injections which she's a little nervous about but they're the most flexible. I feel for you OP, it's shit but hopefully the medication and treatment will start working for you.

I never had dental problems sorry!