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.

Alternative therapies/medicines are "alternative to western medicine". And in general they often help where the western medicine doesnt.

And they often don't and often harm, financially, physically, psychologically or all three. They are a terrible thing to suggest to someone who has a) likely tried everything and b) is desperate.

Suggesting fairly mainstream alternative therapies is also insulting to the intelligence of those of us with chronic illness. We haven’t not got better because we haven’t tried hard enough or haven’t looked for enough solutions. We’ve not got better because there is no cure for our disease. We’re not managing it well because the NHS is shit for chronic illness, not because we aren’t capable of advocating for ourselves.

seriously in chronic illness groups we have Memes about people who insist that yoga or turmeric or acupressure will help. Don’t be that person.

Sometimes the only things that help with chronic illness when the NHS is no help is listening to what other people have found useful. That can be managing diet, sometimes alternative therapies. No they are not cures but sometimes they make life a little less unpleasant. Very occasionally when doctors stop to listen an alternative therapy becomes mainstream. Mindfulness used to be alternative and rubbished, now it's widely used in psychiatry. Yoga and massage are accepted as beneficial for stress relief.

I have no idea what people with Crohns find helpful in managing their symptoms - but I strongly suspect that they are not all rubbishing alternative therapies.

That's not my point.

I do find very gentle yoga (mainly done in swimming pool) is helpful in counteracting the arthritis I have alongside Crohn's. I eat chia seeds to provide more soluble fibre as I can't eat a lot of insoluble fibre.

My point is that someone who doesn't have this illness suggesting fairly mainstream alternative therapies implies that we haven't already thought of them and are either using them or have found they don't help.

Do you really think that people who have had an illness for years and are in possession of an internet connection and a brain cell don't know about yoga, or acupuncture, or all manner of faddy diets that do more for the bank balance of the "inventor" of them than our guts? We are used to being treated as if we are not experts in our conditions by patronising doctors - we don't need it from randoms on the internet as well.

@MrsMcGarry Did you know that some people think hyperbaric oxygen helps with inflammation and have you tried it? Would you rather not hear about it?

I knew it - because, as previously mentioned I am in possession of a brain and an internet connection. I’m also very incentivised to find things that might help me feel less shit.

I’ve actually tried HBOT - quite a few years ago, and found it was extremely expensive and didn’t make me feel any better. I’m glad for those people it helps.

Hi OP, I'm pleased you see a bit of a way forward.

I think if you can find a new consultant who listens and is a problem solver, it could really help.

My elderly dad had a sudden onset inflammatory bowel disease in 2020 and had to have an emergency ileostomy (now has a stoma). He hit it off really well with the surgeon and I think it helped psychologically. He felt they were fighting the problem together.

Regarding diet, if you posted on here Mumsnetters might be able to recommend a dietician who specialises in Chrohn's?

My daughter has a bunch of dietary issues linked to autism and ADHD and seeing a specialist dietician has really helped (not NHS - NHS were useless).

Frequently Asked Questions l CityDietitians https://share.google/rYNi2XvatUQNcP3HN

I don't know where you are but this one in central London seems well reviewed.

By the "NHS was useless" I meant the availability of their service not that their paediatric dietician was bad. They might be, but I gave up waiting after 8 months. They were only offering one appointment too, and with diet it's never a one time fix.

Do you have an employee assistance programme at work?

My heart goes out to you, I've had Crohn's for 16 years, had a number of surgeries and am now in remission on biologics. I find it such a lonely illness to have as there are so many variables, everyone has different symptoms and even the experts can be dismissive. I'm struggling with the after effects psychologically and physically after my last surgery but because I'm in remission I feel I should just be grateful whereas my friend who is recovering from cancer has counselling and support groups and nurse via the hospital. I don't grudge her or envy her position at all, but Crohn's patients need support too.

I do feel I have got to a better place by pushing for specialist support via my works EHP, my boss is good now but it has been a consistent uphill struggle and sometimes I'm just too tired, I just want to be heard and I wish you could be too.

Ironically I am supporting a junior team member who has just had stoma surgery due to UC, I am throwing the world at him to give support.

I hope you manage to push for a team who hear your concerns and work with you to find a way forward, you deserve it

I’m so sorry you’re carrying all of this. I don’t think anyone could receive news like that — especially after everything you’ve already endured — and simply be expected to feel grateful, relieved, or “back to normal” because it isn’t cancer. Of course you are devastated and frightened. This is still life-altering news, and it sounds as though it was given to you without the emotional support or preparation you deserved.
It makes complete sense that you feel abandoned. When someone has cancer, there is often a whole structure around them: named nurses, helplines, pathways, work adjustments, people who immediately understand that this is serious. But chronic illness can be brutal in a quieter, more isolating way, because people hear “not cancer” and assume that means “good news”, when actually you are still facing pain, uncertainty, trauma, major surgery being discussed, and the fear that your future has narrowed in a way you were not ready for.
You are not being dramatic. You are grieving the options you thought you still had, the body you wish you could rely on, and the life you imagined for yourself. That is a huge amount to process, especially alone.
I also don’t think you need to decide today how you feel about every possible treatment option. Today may just be about getting through the shock of what you’ve been told. You are allowed to ask for a second opinion, to ask exactly what has and hasn’t been considered, to ask for psychological support, an IBD nurse contact, pain support, occupational health input, and time. You are allowed to say, “I am not coping with the way this news has landed and I need help.”
Please don’t minimise this just because other people might. Not having cancer does not mean you are fine. It does not mean this isn’t traumatic. It does not mean you should be able to turn up on Monday and pretend your whole world hasn’t just shifted.
I know I can’t fix it, but I want you to know that I have read every word and I really hear how frightened, exhausted and alone you feel. You deserve support, compassion and proper care through this — not just a treatment plan, but help to carry the emotional weight of what you’ve been through and what you are facing now.

The annoying people who suggested I could cure myself by eating a handful of parsley and walking across hot stones on June the 9th at 10 am etc etc made me want to cry. Chronic illness -- if you don't have it honestly keep your mouth shut.

🙄

I'm not coping very well since the shock has worn off.

I did contact one of the patient support charities about how to get a referral to a specialist centre. My GP has now made the referral, but I don't know what they wrote or if it will have gone to the team I requested or if they will accept it or if anyone will tell me if they don't. I have been sent round the houses before due to errors in referrals so I'm not feeling very confident.

I haven't spoken to work or taken time off. I don't want them thinking I'm making a fuss or attention-seeking by talking about something difficult that isn't work related. And I don't want people thinking about my body in that kind of detail either. People have been kind on this thread but my experience out in the world is that people aren't kind about Crohn's.

While I was researching hospitals and trying to get the referral it gave me something achievable to focus on. Now it's sinking in that even if I get to see a different hospital team that none of this is going away, nobody can fix the structural damage that's happened while my local trust were dropping the ball and messing around and letting me down. It took years to even get a diagnosis because I kept being told there was nothing wrong with me and I was just anxious. By the time I was finally diagnosed it was because irreversible damage had already happened. And then the "care" since then has been half-arsed at best. There have been so many mistakes and delays and missed opportunities and shortcomings.

I wish I had known that I was supposed to be allowed to choose where I received care.

I just want my old life back, the old "me" who wasn't broken by all this rubbish, and all the hopes and plans for my future that have been taken away. I don't want to spend the whole of the rest of my life being traumatised by hospitals and horrific procedures and being tormented every day by this disease.

I don't know how other people cope because I can't. Or maybe they're all pretending - like I pretend to be happy at work then spend my time off crying and too exhausted to do anything. I'm so sad.

I’m not sure I am coping any better than you. I have about 6 weeks where I feel ok (but with a very limited life) and then two weeks of increasing symptoms and tiredness during which I think my life is not worth living and the only reason I don’t kill myself is because I know what it’s like to grow up with a dead mother and I don’t want to do that to my kids.

i also had 15 years of illness before diagnosis and a complete lack of actual caring from medical professionals. Im
not sure of if knowing you aren’t the only person suffering and feeling like this is useful or not, but it’s true.

the things that have helped me:
Really good therapy that was really about addressing the dead mother stuff but affected every part of me and allowed me to give myself grace and accept that life doesn’t have to be perfect to be wonderful (though we are so far from perfect it’s laughable)
Finding the joy - even in this new life I never wanted as a disabled person (and it was only about 4 years ago I accepted I was disabled and allowed myself that label) there is joy, whether that be clean linen sheets on my bed, my dog (that my dh has to walk more than me) or the kids I managed to bring up to be amazing young adults even when really ill.
Re-organising my life. I’m really lucky that a well paid career (and ex husband) means I don’t have to work as long as I’m not too extravagant. I did get a very part time and flexible job that I love, and can do from a laptop in bed on bad days, and on good days I do voluntary work that is incredibly fulfilling. I accepted that I have limited energy and decided to not spend it on anything that didn’t make me happy.

I would speak to someone at work - if not your boss then HR? I only started telling people how ill I was a few years ago (and not talking poo. I say “you know when you get an ulcer on your tongue and it’s really painful and annoying? Well my guts are covered with those and it’s really painful” or “my entire body is inflamed and working super hard to fight itself, and that’s knackering”. I’ve found people are far more understanding than I expected.

Your life has shit (literally and figuratively in it) you have to grieve the life you lost before you can start finding joy in the life you have now

What @MrsMcGarry said. Its a mourning proccess really, so you need to take all the time you need to proccess it. Therapy is great, if you can find a chronic illness specialist one. I can't remember if you are on antidepressants, but it might be worth talking to your GP about them (or increasing them), they won't heal you but should help you proccess this emotionally.
And please do talk to your boss or HR or someone at work. Crohn's isn't well understood, but they have a legal duty of care. The Crohn's and Colitis organisations may have some suggestions for suitable reasonable adjustments.

I'm so sorry op. I don't have crohns but I do have severe chronic illnesses that affect every aspect of my life and I really do think what you're feeling and describing is grief. Grief needs to be felt and processed and it's bloody hard, but it is possible to find joy in life even though it won't be in the same ways you did before. It might help to read about grief in context with illness and life changes and how people come through the other side to some extent and accept the way life is now.

There's probably a lot of anger due to the missed opportunities- have you written a formal complaint about your doctor/hospital? Sometimes that helps.

I know it feels impossible right now but you can find way forward but it will probably feel hopeless and dark for a while as you navigate the grief. I hope you find support groups as I suspect knowing others feel the same might help.

I feel for you as life just isn't fair and it's just incredibly painful to try and keep going when an illness takes so much from you. You're not alone.

OP I’m so sorry for what you’re going through and how alone you feel. For an entirely different medical issue (albeit he does have ulcerative collitis so we have some understanding of this type of autoimmune condition) my DH has also felt rather ‘abandoned’ by the NHS. I get a sense that you feel like you need some quite specific mental health support as well as medical support. Do any of the Crohns charities have support groups? - again, entirely unrelated medical issue but by DH has sound the support groups (both in person and online) for the charity which supports his specific issue to be a really invaluable lifeline in terms of being to connect with people who understand exactly what he is going through. And maybe it feels like some therapy or counselling could also be beneficial, because it’s a lot to have to deal with, ie the trauma you’ve described from past surgeries the potential for something quite significant ie a stoma altering your body.

I'm sorry you've had to fight so hard for support. I agree with you, it is a really lonely illness. Getting into remission doesn't wash away everything that came before and it doesn't mean you don't deserve support. It's sad that it's not there for people and I don't really understand why it's not.

It is shit, isn't it. I wish you hadn't suffered so much but I appreciate you sharing what's helped you and for speaking so candidly.

The mouth ulcer way of talking about it is useful, I could try that, thanks. Although you have also just reminded me of when I once referred to myself as disabled in a conversation with HR and they rolled their eyes at me. Maybe it's not so inexplicable that I'm hesitant to talk to work. My manager isn't like that though.

WTF do you base this on? I can relate to the cancer--it's a fact that there are many many support options for cancer that aren't there for bowel disease.

But who the hell do you think you are saying that the OP doesn't need a stoma? What the fuck do you know about her personal issues and why the stoma has been suggested? Stomas are not done lightly, they are not just offered because a doctor cannot not be arsed to find another treatment pathway!

Hi OP, my DH has crohns and I have had bowel ops are obstructions due to adhesions so have a bit of an awareness.

I have heard St Marks hospital in London is good for bowel problems, is that where you have been referred I wonder.

Also talking therapies can help with long term illness which might be of help, via the GP.

Just in case any of that is helpful. Kind thoughts

@distraughtandhopelessibd

OP, were you able to consider the private consultation I suggested?

I think that you would be seen very quickly.

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

I think you're all right about grief and mourning. I find that concept slightly harder to understand/recognise in this context (compared to losing loved ones), but I can see that what I have been feeling is similar. And reading the replies here it does make sense that I would be grieving. I would certainly understand why someone else was if they were going through this.

There's so much to get my head around. I am not sure what kind of psychological support might help. Maybe I'm hoping for too much.

I have had NHS CBT via GP before and it was very "right, what are your goals for our six sessions? Now here's a worksheet, what are you going to do towards those goals by next week?". As if my only problem was that I had just been too lazy or disorganised to do anything myself. There wasn't really any space for the possibility that perhaps there were obstacles between me and "goals" that needed to be addressed first. It made me feel a bit like I was being blamed for struggling rather than being helped to feel better about what I was trying to deal with.

Maybe I am just too negative. I have their CBT booklet about addressing "automatic negative thoughts" where you're supposed to construct a "more rational" argument against your negative thoughts so that you won't feel anxious or depressed anymore. Well, rationally this situation is objectively negative so I don't think my negative thoughts are irrational or the source of my distress. I am very aware of all the ways in which I'm lucky and things could be worse, and I remind myself of that and am grateful for what I do have. I just think the shit situation is the source of my distress.

<Waffle, waffle, rambles on>

No, I hadn't made it very far down the long list I made of things to follow up. Thanks for re-sharing. Her CV is very impressive.

I think my fear is paying for a private appointment and being told "yes I think an ileostomy is your only/best bet" because I just don't want to hear that again right now to be honest. I know that makes me a coward.