Devastated - end of the road with Crohn's disease

[distraughtandhopelessibd]

Not sure what I'm trying to achieve by posting but feeling trapped in a black hole.

I have uncontrolled Crohn's disease. We've gone through all the first line treatments, removed part of my bowel (which was traumatic and took me a very long time to recover from), failed multiple biologics and had cancer scares.

I have just been told that it's not cancer this time either but that the medication has failed again and we have run out of road. There's one drug left to try but they don't think it will work. Told me that leaves me with the "option" to have my bowel removed and have a stoma.

Except that won't help with the joint pain caused by Crohn's or the fatigue or the constant embarrassment and worrying about bathroom access and it won't remove the cancer risk because I have connected risk factors and it won't improve my quality of life or remedy the PTSD I have from a decade of traumatic, failed hospital treatments and admissions. It won't fix anything at all it will just give me an even worse set of problems for the rest of my life. I am absolutely not having my bowel removed just because the NHS won't fund any other drugs or try dual therapies.

I have had this hopeless devastating news dropped on me on my own this week and there is no support whatsoever to help me cope with it. Of course I am glad it is not cancer but at the same time I cannot help but notice that if it had been cancer I would have had dedicated expert helplines, specialist nurse support, people who understood, support threads I could join, a process to follow at work to support me - and most of all we would have had definite and superior treatment options to what I've just been presented with.

Instead I have nobody I can call who will understand, no support lines for this circumstance, no professional support, no support from my employer because they just think it's great news that it's not cancer and I should be happy and fine and carrying on as normal. If it had been cancer we could have fixed it and I would have had space and grace to deal with it and to feel devastated and frightened. We can't fix this and I'm still left with the threat of cancer hanging over me. And no space or grace to cope with my emotions. I do feel devastated and frightened.

I feel like all my hopes and dreams are shattered in tiny pieces on the ground that can never be put back together and I have nowhere to turn and nobody who understands. Somehow I'm supposed to piece myself back together and turn up for work on Monday as if everything is fine. I feel like my life is over and my future is gone.

They didn't tell me this drug was our last chance, I thought there would be more options if this failed. I was not prepared for the news they gave me at all and I am not coping today. I feel so desperately alone and abandoned.

If you got this far, I know nobody can fix this, but thank you for reading.

Thank you for taking the time to write such a kind and thoughtful reply. I missed it at the time because I'd sunk into a bit of a black pit, but reading it today has been really comforting.

I hope it doesn't sound like I'm being dismissive of anyone's suggestions. I really don't mean to be, I'm just trying to process things and work them through in my mind. I have been burnt before so probably also wary about opening myself up to getting hurt again.

I think some kind of grief counselling with someone who understands Crohn's/chronic illness and isn't going to make dismissive remarks about how it's not that bad really or tell me it's my fault for not being more positive might help. If that exists...

I bet it does exist!

I know what you mean though. I saw an awful counsellor once at a low point and it was so unhelpful (I have also seen a really good one though).

Hi OP, did you see this link when I posted it? I have no idea if London is accessible for you. It does seem a good idea to explore diet.

I am coeliac and it has taken a lot of fiddling about to get diet right. Or a bit right-er shall we say.

There seem to be new therapies available @distraughtandhopelessibd.

Dual-targeted therapy (DTT), combining biologics or biologics with small molecules, has emerged as a promising approach.

DTT can only be accessed through specialist NHS Trusts, typically major tertiary hospitals or university teaching hospitals with dedicated (IBD) centres.

Notably, Oxford University Hospitals NHS Trust (John Radcliffe Hospital, Oxford), Barts Health NHS Trust and Guy's and St Thomas' NHS Foundation Trust each of whom specialise in refractory Crohn's. There may be others more local to you.

It's worth a conversation with your consultant to ask if they would refer you to a specialist tertiary centre equipped to evaluate you for specialized off-label therapies or clinical trials, (such as those just mentioned)

Although, as you know, you cannot "appeal" against the MDT, you absolutely have the right to challenge the outcome and seek an alternative path. You have a legal right to request a second opinion from an IBD specialist at a different NHS Trust which you appear to have done.

You could ask for a review of the MDT but as you have outlined, it appears that your current gastroenterologist is implying surgery is the only option they will now offer, for you. You could also discuss your treatment with PALS?

It would also be of benefit if you would approach Crohn's & Colitis UK who are patient advocates, who could review your case whilst offering support, guidance, and will connect with specialists who handle complex, refractory cases.

Although it's such a hard road to travel @distraughtandhopelessibd you seem to be very well informed and are advocating strongly for yourself, which is both vital and hugely admirable when you're feeling so poorly.

More surgery is not your only option, stay vigilant and stay assertive.

Wishing you every success 🌸

CBT is bollocks for stuff like this. I also had sessions on NHS and they just made me more cross
I ended up having a few years of relational psychotherapy that helped me see myself as a human being, not a human doing. Accept that I had intrinsic value as a person and stop seeing everything as transactional (meeting a lovely man who also believed I had intrinsic value helped too)

The combination of only thinking you have worth in terms of the things you do for others or achieve, and being chronically ill and therefore unable to do as much as you would want to do is crippling.

And you absolutely do not have to count your blessings yet. You can’t start doing that until you have properly processed what you’ve lost. The peace that disappears when you no longer take good health for granted, the trust in systems to help you, and the surety of knowing you can rely on your body to execute the plans your brain has. Take time to wallow in grief about that before you even try to pick yourself up

Thanks just taking a look. I won't pretend to be an expert on coeliac disease but from what I know it sounds like hard work to manage. I'm glad you've managed to make progress with diet. I don't know why it's so hard to get access to dietitians for conditions like these.

This has reminded me we have some kind of health cash thing at work. Not health insurance and only a basic plan but it reimburses eye tests and things. I'm sure I've heard colleagues mention they've used it towards the odd physio appointment so I will check if it might cover some of the cost of a private consultant appointment or any other things like this.

I also found this Talking Toolkit today that you can tailor according to the type of difficult conversation you need to have and who it's going to be with.

I found a few useful tips in it for work conversations so I just wanted to add it to the thread in case it helps anyone in future who ends up here when they're struggling with Crohn's. (I have found old threads on here helpful before when trying to find someone who'd been through anything similar.)

https://www.crohnsandcolitis.org.uk/info-support/information-about-crohns-and-colitis/all-information-about-crohns-and-colitis/talking-toolkit

I'm glad it's not just me, I got quite cross just remembering it.

I can really relate to this, especially how I measure my self-worth. I am rubbish at cutting myself any kind of slack.

Well you can start by reframing that:

"I find it really hard to cut myself any kind of slack. I need help to learn that I am allowed to be less than perfect"🤗

DH has been unwell with a cardiac issue for around 9 years now, and it's been an eye opener as to how hard you have to fight to have your voice heard at times. Salvation for him finally came from seeing another local cardiologist as a private patient, this one was much younger and far more "on the ball" with newer treatments than the "old school" chap he'd been seeing on the NHS. We were lucky that he was able to swap DH onto his NHS list although DH had all the tests done privately too to save time. He had surgery in 2022 and is going back in two weeks today for more but he's sadly one of the patients that medication just didn't work for.

I would always look for a second opinion regardless of your condition. I hope you manage to achieve this, OP, and I'm sorry you're having such a rotten time of it

That's kind of you but it's a walk in the park compared to what you're dealing with. It does have in common that colleagues are ill-informed though. I'm a teacher and despite reminding colleagues I can't eat some foods, I've never been catered for at any school event, trip, or residential. I just assume I'd better bring my own food always.

I think very few people can genuinely empathise with something they've no experience with personally...

And yes, be nice to yourself.

You are one tough cookie to have got through this and to be working etc.

I have a chronic, none treatable illness. Its a a horrible thing to get your head around.

Your life isn't over. Its just something you have to deal with somehow. Trust me.

Well, I know a 10 year old with one and he is fine and does ‘normal’ things. Is that better?

My GP has just texted me that they couldn't work out how to make the referral to the specialist hospital I requested so they have just referred me to a other random local general hospital instead.

Completely distraught right now.

Speak to your practice manager tell you do not want a local referral you want a specialist referral find who you want to go with give them a ring find out how your GP refers to that service( unless you stamp your feet if they can get away with it they will you are entitled to 2nd opinion) if they will not do anything complain to your ICB
https://www.nhs.uk/nhs-services/find-your-local-integrated-care-board/

not sure been mentioned try Wren project a listening service only for people with autoimmune conditions. Very helpful just to talk.

https://www.wrenproject.org

Thats ridiculous of them, but sadly not unusual.
Call the team at your preferred hospital and ask how they want referrals done. Call the main number and ask for the GI clinic.

@distraughtandhopelessibd

OP, I think that you need to book to see a specialist privately now, as I suggested before.

Please don't wait, make an appointment for this month or August.

welbeck.com/find-a-specialist/professor-ailsa-hart

OP, I think that what may be happening is that you are seeking an out of area referral which the ICB is not supporting.

You may be able to find a document online which explains what your local ICB will and won't support.

Oh @distraughtandhopelessibd that is beyond f**king disappointing. Sadly, I think many GPs hands are tied when it comes to making out of area referrals to specialist centres. When I was referred & my care moved to one of these, all the paperwork & documentation was done by my lead hospital consultant. He took care of everything as he was best placed to explain why the move was needed. Would it be worth trying your hospital consultant? And I’d also get PALS involved so they’re able to support you if needed. They can also get things moving if needed. I’m not sure if you’re in to the positive thinking, but I’m sending so much your way right now - imagine lots of little stars & hearts flying towards you 💐 (I’ll throw in a few unicorns too - they seem to pop up a lot on positive thinking merch!).

I wonder if this would be of use for you @distraughtandhopelessibd

Are you looking at St Marks OP, if so there are forms online via the website.

I had my stoma when I was in my mid 20s.I had said like you that I would never ever have one. In the end I was so ill I just couldn't wait to get down into that operating theatre . I can't tell you how desperate I was to have that operation. The fact that you actually don't feel like that tells me that you haven't come to the end of the road. You are prepared to keep on fighting. You must be so strong even if you don't feel it at the moment. I hope your strength will eventually mean a good outcome for you x.

Hey.

You must be really struggling with it all, can't be a nice position to be in. Hopefully the last option medicine will help

Fwiw, I (36f) have a colostomy and have had one for the last 9 years. Absolutely changed my life (for the better). I didn't/don't have Crohn's but I do have chronic bowel issues.

I'm in a relationship, go to the gym daily, work full time and I am planning my first this year too.

Please don't see it at the end of your life- yes, it's a huge readjust but it's fine, you adjust, you laugh when it goes wrong and you feel a million times happier know you will bypass any pain and the mad dashes for the toilet. Appreciate it may not help with some of the other Crohn's symptoms but it's a miserable existence living with daily stomach issues.

"PM me Hun" if you want to discuss details.