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.