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.

I have a stoma bag (cancer) huge shock .Absolutely .getting used to it now a little .Do get plenty of advice first and take your time .It isnt too bad when you get used to it .Just adjustments really

Hello @distraughtandhopelessibd , I'm so sorry for what your are experiencing. I have an autoimmune disease and I agree that people find it really difficult to understand that they're lifelong illnesses. I managed to put mine into remission and it is possible to make improvements with lifestyle changes. I'm not saying it goes away forever, but it's possible to improve!

The NHS is great at offering medicines and interventions for symptoms. Unfortunately, they don't get to the root cause or look at other ways to support. Whilst you're continuing with medication, which is very important, please start to research functional medicine and lifestyle changes and how that can help.

I would strongly recommend looking at Eat Burn Sleep on Instagram. This lady is a nutritionist who has put her Ulcerative Collitise in remission through various lifestyle changes. She does lots of research and someone like her (there'll be lots of nutritionists out there) could change your life. I guess you just need to know where to look. I'm referring to changes such as diet, gut health (see Tim Spector), movement, nervous system regulation, sleep and circadian rhythm, visualisation, neuroplasticity etc.

I have put my RA into remission and haven't taken medication for a couple of years. I spoke to a young NHS rheumatologist recently who said he wished his patients considered the holistic route too as this (and medication) can make a huge difference.

Louise from Made in Chelsea has a stombag and shares her experience on Instagram. It's really worth a look. She's very honest and she shows how to live a good life with a bag too, if that's the route you go down.

Wishing you all the best of luck. Whatever happens, you can feel happier again xxx

@Viviennemary I’ve met many patients over the 25+ years of living with Crohn’s Disease who’ve expressed the same view as @distraughtandhopelessibd & the cancer comment. That IBD is only second rate in terms of support given, & in relation to that offered to cancer patients. When you’re receiving little to no support, your body is failing you & the outlook is bleak, you’d be surprised what people wish. It’s a really sad & sorry state of affairs 😞

My DP is praying that they'll offer him a reverse. He had severe diverticulitis and bowel cancer. I don't think that the reverse will be the answer he wants, though. I've only stayed on FB for the support groups, Ileostomy and stoma support group uk, was recommended by a young nurse who has a stoma. There's inspirational people in that group who still do sports and go swimming etc. It might not come to it, but it might give you hope.

OP, you have just received life-changing news and are in shock. All you can think of is the things you will lose in your life as a result of your prognosis. This is a normal, healthy response. You need time and space to grieve for what you have lost and to prepare for a new chapter in your life. So my advice would be to let your brain do its job, and cry, and rage, and complain as much as you like. Because you're right, this is not fair.

But I have a shred of hope for you. You will not feel the way you feel now for long. We have an incredible ability to readjust to new situations that initially looked grim, and even find positives in them. There will be many, many opportunities to enjoy life in new and unexpected avenues. Some of the things you fear won't be as bad. And some unexpected things will turn out to be bad, and others will actually turn good. Your stress and rage will fade and you will find a way through, because this is the person you are. I promise you, OP, you will enjoy life again, and you will surprise yourself multiple times looking back and realising that the terrible life you envision now just will not materialise.

Hang on there. And keep writing, and talking to whomever listens. We are here for you.

I am so sorry to hear you're struggling OP. I too have crohn's, and the fatigue and other crap is really hard to deal with. I definitely think it would be wise to see someone who is at a different hospital, it sounds like your surgery was horrendous and you've completely lost faith in your care team (a reasonable outcome if you've had a horrendous time). Even if another team can't offer you better options, trusting that you have heard everything will give you some peace.

I do want to echo that while I don't have an ostomy myself, I have seen many, many people struggle on for years and then find the ostomy life changing even if it doesn't eliminate their IBD, because it means they do not run the risk of having an accident in public anymore. For most of them the largest hurdle, as you're facing now, was the mental hurdle.

I hope you find some peace soon, OP, though I know that is far from a given. This disease is tough.

I'm so sorry OP. Don't you have an IBD specialist nurse service and advice line you can contact?
if you do decide to opt for a stoma, you should then have access to Stoma nurses who will provide you with help and support, at least that's the case at the hospital I work in and I assume it's the same elsewhere.
I work in a different speciality and it's so hard when you've cycled through the different biologics and none work for you. Unfortunately this does happen sometimes, and other solutions then have to be found.

I haven’t read all your replies and I can see you have been given some links to charities. Do speak to the charities - it isn’t always them
that can help but they can often point you in a different direction. Finding some sort of support group of others with similar diagnosis might be a start - talking to someone who understands how you are feeling and dealing with the same issues can be really helpful.

You might also find PALS useful, they can help interpret medical terms and help you advocate for alternative care - perhaps a second opinion with a different specialist for a different perspective.

But also huge hugs, being in constant pain is a major cause of depression.

Hi OP. So sorry you're going through this. I'm 4 weeks post emergency surgery albeit mine was from diverticulitis rather than Crohn's. They removed 2/3 of my bowel so I now have a stoma which I'm told will be permanent. It is perfectly understandable to feel shock, distress and fear at the news you have had. My operation and stoma saved my life, so a slightly different situation to where it seems you are at. It is a massive, life altering change. I am starting to get used to the stoma and managing it (although I'm still in hospital so I'm sure being out will present some different challenges) and the stoma nurses have been incredible. If you want to PM me I'm happy to chat more about it.

I can't really offer any advice re second medical opinions but previous posters have offered some good suggestions.

In your shoes I would absolutely take some time off work in the short term at least to give you some time and headspace to process everything. I'd also ask your manager to refer to you to occupational health as they may be able to advise about what adjustments work should consider for you.

I wish you all the best whichever path you decide is right for you x

Hi - I'm sorry I dont know much about Crohns. As St Marks was mentioned I looked at their consultants and this is the one that specialises in hard to manage Crohns https://www.finder.bupa.co.uk/Consultant/view/319749/dr_james_l_alexander

It would probably cost £300 to see him as that is a normal rate for private specialist consultants. He does video appointments if London is very distant. He might be able to obtain a copy of your NHS notes but you can do a request for them. It's called a SAR request (subject access request) and if you google the name of the Trust treating you + SAR you will hopefully find the contact point. If you use the NHS app there may be letters from the hospital to the gp on there that will say what has been tried and when.

If you can at all afford it a private appointment with him or someone like him will give you the opportunity to ask more questions.

Im so sorry you are going through this OP.
it sounds like

1. you don’t feel the hospital are listening to you.
2. you don’t feel your work understands fully

For 1. have you thought of trying Martha’s Law? You fit the criteria…
https://www.england.nhs.uk/patient-safety/marthas-rule/

For 2. Does your work recognise you have a disability? They should be providing reasonable adjustments. That could take the form of counselling, time off, more flexible hours.

I also follow MrCrohnsColitis on Facebook. He’s amazing. But not typical I’m guessing.

All the very best. Just one supportive and knowledgeable consultant who understands you could make a world of difference

Acupuncture maybe a small step forward

This is a list of clinical trials recruiting adults in the uk https://bepartofresearch.nihr.ac.uk/results/search-results?query=Crohn%27s%20disease&location=

It's useful for pointing you at places where active research is ongoing. St Marks and Hull came up in the first one I looked at. Another had a long list of hospitals (see below). If you are near Addenbrookes they have an IBD psychology clinic and an IBD dietician clinic so might be able to provide more support.

Whipps Cross University Hospital
Whipps Cross Road Leytonstone
London
E11 1NR

Addenbrookes
Addenbrookes Hospital Hills Road
Cambridge
CB2 0QQ

Glasgow Royal Infirmary
84 Castle Street
Glasgow
G4 0SF

Guys Hospital
Guys Hospital Great Maze Pond
London
SE1 9RT

Queen Elizabeth Hospital
Queen Elizabeth Medical Centre Edgbaston
Birmingham
B15 2TH

Whiston Hospital
St. Helens & Knowsley Hospital Warrington Road
Prescot
L35 5DR

Stepping Hill Hospital
Stockport NHS Foundation Trust Stepping Hill Hospital Poplar Grove
Stockport
SK2 7JE

St George's University Hospitals NHS Foundation Trust
Cranmer Terrace, Clinical Research Facility, Corridor 4 Jenner Wing
London
SW17 0RE

Fairfield General Hospital
Ward 19 Clinical Research Unit Rochdale Old Road
Bury
BL9 7TD

I am no Crohns expert but have you tried looking into what alternative therapies have to offer for you? It is an inflammatory disease so there should be ways to work with that.

I know you are trying to help but please don't say this to someone with a chronic illness. Many 'alternative therapies' would require us to stop our existing therapies, which is actively dangerous. Alternative therapies are alternative because there is no evidence for them working, and many of them are a way for people to make money at the expensive of vulnerable patients. Even those that have a mild antiinflammatory effect will not be strong enough to deal with a whole-of-body systemic serious inflammation condition.

Also? Trust me when I say that we've usually tried everything, and being asked this minimises our genuine pain and distress.

I know many people here are just trying to be helpful, but as someone with Crohn’s and multiple other autoimmune conditions can I just ask those of you who do not have these diseases to say things like “have you tried acupuncture” or “ look into alternative medicine”

We take hard-core biologic drugs that have side effects listed like “death”. We have regular consultations with doctors and many of us have become more expert in the latest research about our disease than most GPs or registrars. Well meant advice is really not helpful or comforting, because yes, we’ve tried pretty much everything.

That said OP, I’m going to make my own suggestions! I’ve been managing my crohns for last few years with infliximab and methotrexate. Still can’t hold down a full time job and have to rest a lot - my employer is amazing and lets me work part time and flexibly from home, and I’m in a role where that can mean staying in a nest of pillows in bed with a laptop. All kudos to you for managing to hold down a proper job - I had to go to London for a meeting recently and the journey wiped me out for two days.

I really do share your fear of a stoma. But people like https://www.facebook.com/share/18siNbcDH9/?mibextid=LQQJ4d this guy have at least made me realise my fear is emotional not rational and that I would cope if I had to have one.

The other thing that has gone out of favour but worked for me years ago was EEN. There’s an abstract here https://pmc.ncbi.nlm.nih.gov/articles/PMC12073377/

Not eating anything but formula for 6 weeks was hard, and the first 3 days were possibly worst of my life, because as well as the formula I was having sugar and caffeine withdrawal. But the next 5 weeks were amazing - I was in full remission, solid, smooth BM’s every other day, loads of energy, and my skin and joint pain cleared up too. course as soon as I started eating even the blandest food again I flared, but for some people the complete gut rest works - EEN is rarely suggested for adults because of playability, but my brilliant but sadly retired first consultant swore by it.

and hugs/manly arm punches - whichever makes you feel better. I do know how shitty you feel and I am sorry. And I absolutely get the “I kinda wish it was cancer” feeling. A lovely friend of mine had breast cancer two years ago and I was of course sympathetic and helpful. But she’s now cured post lumpectomy and radiotherapy and has told me she feels sorry for me, knowing I’ll never have that feeling of it being over and feeling better. Nobody gets chronic illness until they get chronic illness and crohn’s is something I would not wish on my worst enemy

I’m sorry … I can hear how upset you are.
I don’t have experience of Crohn’s disease but once the shock has worn off, maybe you could do loads of research?
A family member has a lifelong condition, she posts about it on TikTok and has so many followers now who have been helped by her.
You are so brave in posting and you are already raising the profile of this horrible illness which can only be a good thing.
Big hugs to you xxx

I couldn’t read your post and not reply.

Different circumstances but I would not be without my stoma now it has honestly changed my life. I never had long term symptoms - from my first flare up to the point of my surgery was less than a month. I wouldn’t have coped long term with the constant need for a toilet, the exhaustion and everything else I experienced and peoples lack of understanding.

I ended up in hospital told they’d try and medicate me but then made the decision that they needed to operate to save my life. Maybe that is why I’m so thankful to have had the surgery although I do feel if I’d have been given the choice I’d have refused so glad the choice was made for me.

I know it must be a big shock for you having surgery presented as a long term option but it doesn’t need to be a bad thing. I know everyone processes things differently and copes differently but hopefully from my story you will see can still achieve everything you want with a stoma and live a great life.

I was 21 when I had my surgery, working an amazing job and studying at the same time just a year from my final exams. I had the surgery and was home within the week, I was back at work within 4 weeks. Within 5 months of the surgery I had flown abroad. My partner stuck by me and we have since got married and had 4 children.

I do get the occasional flare up still but am able to eat what I want and never gain weight so a positive in itself. I have always worn high waisted jeans and never had a problem with them rubbing on the stoma. Through my clothes you can’t even tell I’ve got it and when I’ve told close friends they’ve honestly be shocked.

There are stoma nurses you will see. I haven’t seen a consultant for years (my choice) and actually been offered a reversal which I’ve decided against. I order my supplies online and that is it but there is lots of support about it you need it. I can still eat everything no restrictions at all.

I know not everyone will experience the same as I have but I just wanted to give you a positive story. I know there is so much negativity.

Please feel free to message me if you ever need someone to talk to.

I have a beautiful looking friend with an illeostomy. She had the whole of her large bowel removed & it changed her life. Her only complaint is she wishes she had it sooner. She is in her late 50s now & not bothered about wearing a bikini so she wears a one piece swimsuit. She thinks it's fantastic that young people nowadays are happy posting pictures on social media showing off an opaque skin coloured appliance. We all produce waste. It's just another way of dealing with it.

Well I'm afraid I am going to mention an adjunctive treatment - hyperbaric oxygen. There is a small amount of research that suggests it may be beneficial (research studies below) as it can reduce inflammation. There is a centre in Plymouth that might possibly consider someone with a consultant referral and funding via their charity although I dont think its in their list of either treated or not treated conditions. https://www.ddrc.org/hyperbarics/referral-funding-hbo/

It is possible for some people to get HBO at MS centres. Ironically some will take cancer patients and I've known cancer patients who said it helps with the side effects of treatment. https://mstrust.org.uk/a-z/ms-therapy-centres You have to pay and its not cheap, although considerably cheaper than commercial HBO centres.

https://pubmed.ncbi.nlm.nih.gov/41095923/
https://pmc.ncbi.nlm.nih.gov/articles/PMC3328239/
https://academic.oup.com/pcm/article/7/1/pbae001/7577619

I realise that's a fairly slim hope and takes money - but I'm trying to give OP some hope. I'd spend money first on a consultant to find what traditional medicine might offer me but if I could afford it I'd consider alternatives because money is no use if you are too ill to make use of it.

I have an ileostomy due to cancer. Absolutely no offence taken from your rather cancer comment! I also have chronic migraines and they have caused me more pain over the years than the cancer did. I'm sorry that it is all so shit.

I will say that you adapt to a stoma.what was alien in the beginning has become routine. Humans are remarkably adaptable. I do hope you get a second opinion though, there has been some great advice on this thread.

Forgive me for bringing up credentials, but it's sort of relevant in this case. Biology Ph.D. and degree in naturopathic medicine from Germany. And with that background I strongly second CallItLoneliness and others saying the same thing. Naturopathic and (some!) alternative medicine can be very useful for day to day niggles. Clinical medicine tends to ignore those. It can also be useful in treating the early stages of conditions brought on by poor lifestyles, whether unhealthy food or lack of exercise.

But.

The big problem with something like Crohn's is that even though you're dealing with upset intestines, which people think they understand, the etiology is quite different from ordinary versions of irritated bowels. Naturopathic treatments might be useful, esp something like acupuncture, but beware of anyone who says to stop clinical treatment. That's a pretty sure sign of a charlatan.

The problem with Crohns is that no-one actually understands what causes it, therefore there is no cure and treatments are not always effective. When clinical medicine effectively fails you it makes sense to consider complementary therapies. I agree that telling someone to stop conventional treatment is usually the sign of a quack and that lots of complementary therapies are more effective at emptying your bank balance than anything else. Still some worth trying for other conditions.

I remember when osteopathy was considered alternative medicine and quackery, now the NHS sometimes prescribes it. .

Hi OP. I have long-standing Crohn's too, for over 30 years. I've had most of my large intestine removed and had a temporary stoma for a year. I don't have much wisdom, just that I understand how you're feeling. I'm in the middle of a flare-up at the moment and think I might need a course of steroids; this might be difficult as I also have type 1 diabetes. Hoping you find a way through.

Martha''s law is for inpatients, not for outpatients.

To the OP, you are absolutely entitled to ask for a second opinion at another unit, either your GP or your current consultant can refer you.

Although I am not a gastroenterologist, I treat people with similar biologic medicines, and while there have been some trials with combination biologics in my specialty, these are not funded by the NHS as due to the cost, the funding for these drugs comes from outside the hospitals and has very strict criteria - single biologics will be funded but not combination. A tertiary centre (a hospital that other hospitals refer to) may have access to clinical trials etc and may have more luck in pleading exceptionality for individual funding requests, so it's definitely worth asking for a second opinion.

Unfortunately, even with the multiple drugs we have these days, sometimes we run out of options, and that's hard for patients. I hope that you can find a way forward.