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.

Oh I’m sorry to read this. My husband suffered with Crohn’s disease since his early teens. Aged 33, he was told that there was nothing more they could do for him after years of steroids and flare ups, he had fistulas that tunneled from his bowel to his bladder that were leaking excrement and was told that if he didn’t have his colon and rectum removed that he would be dead within the year. He was very against the op but he had become a virtual prisoner in his own home, was difficult to work and have a social life etc.
he had the op which was a total success. It ended up as an ileostomy and he has now had it for nearly 24 years. It has changed his life for the better. He runs a successful business, can pretty much eat whatever he wants within reason! His Crohn’s luckily has never returned (I do understand this isn’t the case for everyone) and the hospital discharged him from yearly checkups around 10 years ago. Yes it takes some getting used to but he is very grateful that he is now healthy. There is a lot more understanding and awareness now for these conditions which is helpful xx

UCL has an amazing IBD centre and they’re at the forefront of medical advancements in this area. Dr Roser Vega heads up one of the clinics and she’s amazing. You can asked to be referred anywhere.

These are the steps to take. And you do have significant choice and influence under the NHS Framework

If you are unhappy with your current care, practical steps are:

1. Ask your consultant directly: “I would like a referral to UCLH for a specialist opinion.”
2. If that doesn’t work, book a GP appointment and request the referral.

A very good friend of mine with Crohns resisted a stoma for years. Totally understandable, but she got to your point op and literally had no choice, so she had it. She was hugely, hugely pissed off about it. It was meant to be for 6 months, but she ended up keeping it for 4 years. It changed her life, radically, for the better. She got used to managing it, gave it a name, and went on with her life, because she felt better than she had for years. She had it reversed 4 years later and it’s never reoccurred.

I read about the right to a second opinion and simply asked my GP for a second opinion from a specific hospital, which they set up with no question. The difference in approach and treatment between the smaller provincial hospital and the larger teaching hospital was astonishing, so do try it.

Upfront disclosure I do not have Crohn's or a stoma. However I used to work for a company making stoma bags so have met many people living with stomas and some are very good friends. Almost everyone says it is better than life pre-stoma but in crisis. One friend had a temporary stoma following cancer treatment and then regretted having it reversed.

Whatever you decide, I wish you well.

A private consultation usually costs between £150 and £300 btw @distraughtandhopelessibd

I have an ileostomy due to Crohn’s, I’ve had it 5 years and it’s been life changing. It was so hard at first, I was so depressed, but you do truly get used to it.

I had an iliostomy in my 20s for the same reason.
There is alot of help out there. My stoma nurse was wonderful. The various charities already suggested provide helplines and advice for employers.
Its a horrible illness but you may find your life improves significantly if you have the operation
.

Hi OP, I too have crohns and have found that avoiding stress is crucial....as is good sleep. I think you might benefit enormously from being signed off work for a while, to concentrate on resting and researching your next steps. Ultimately it is an inflammation, so if you can get the inflammation under control things should improve....turmeric is naturally good for this. I have a teaspoon in warm milk every day. All the drugs have side affects (I've been on azathioprine for many years but stopped about a decade ago.) It is also linked to hormones and I believe womens symptoms decrease dramatically when they go through menopause. Please don't despair there are excellent Drs out there who can help and reassure....definitely eat as healthily as possible and work out which foods you can't tolerate. Am so sorry you're not getting the support you need....

Have a look at Wren project, they are a support service for people with autoimmune conditions. Unsure if crohns classed as autoimmune, but worth asking them. Helpful service. Also FB have good uk support groups worth having a look.

https://www.wrenproject.org

I'm sorry for your illness. I believe the new drug I take for RA ( filgotinib) is used for Crohn's.

Hi, I have had a stoma for about 7 years. Mine was due to bowel perforation caused by undiagnosed diverticulitis. I was blue-lighted into hospital and woke up in intensive care with ‘Charlie’. Something of a surprise.
Since having the stoma I have engaged with loads of other people in the same situation. Many of those had Crohn’s disease. Almost without exception the operation has hugely improved their quality of life. Sometimes, a stoma can be a pain in the arse (or not arse) but it’s ok.
I also understand that some people are embarrassed by wearing a bag. I couldn’t care less what people think. I have four small grandchildren, six, four, two and 10 months. The three older ones know my bottom is broken and that I poop into a bag. Again, it’s alright.
There is an excellent group, Colostomy UK, on Facebook, where you can find lots of support together with people who are in the same situation.
Sending hugs and good wishes.

This sounds awful. But you really shouldnt be wishing it was cancer because at least you'd get help. But it's sad you are feeling unsupported. I don't think you need such drastic intervention such a having your bowel removed and a stoma fitted. You seem very very stressed and somebody suggested a specialist health psychologist to help you deal with this. I think that's a good idea.

I am sorry to read this, but we are all thinking about you and hoping you can get better.
Have you tried FMT therapy, I just checked and it said you may be able to do it by paying for it privately since it is not approved by NICE for Crohn’s.

I am just so terribly, terribly sorry, OP. You poor thing.

I don't have any expertise or experience to offer, but I am pretty shocked that life changing surgery has been recommended without referral to a specialist centre. I'd definitely be willing to travel to get that additional input.

So sorry to hear this OP. I would ask for a second opinion from St Mark's.

@distraughtandhopelessibd I'm sorry to hear you've been through so much. Have you looked into LDN for Crohn's? Try starting here. You'd have to do it privately but it's straightforward and the drug itself isn't expensive.

I think finding out what supports have worked for other people is a really good idea. Is that something that the Crohn's helpline could help with? As an employer, making the right reasonable adjustments can be difficult if you don't have any idea what the employee really needs. Yes, they should be doing some research too, but if you could go to them with really practical requests then that might help. You could also ask to be referred to Occupational Health who should have some ideas too. Good luck OP!

I used to be a GP and my heart goes out to you as I have met others who express the same feelings. Life has a way of carrying on better than people fear . New challenges bring new friends , different thoughts, things become manageable, science evolves, clinical trials are offered etc etc . Agree re cancer being better supported . Do insist on NHS counselling. Look for support groups both in UK and USA. Avoid people who say bizarre and clueless things but laugh about the things they say later !! 🙏Ascending

I really feel for you. I too have an autoimmune condition (rheumatoid arthritis) and have been through many different drugs in the 10 years since I developed it. My consultant assures me that there are more drugs to try but I’m well aware that eventually I will reach the end of the line. Like you I do recognise that autoimmune conditions are usually not directly fatal but I also feel that they are very much the ‘Cinderellas’ in the recognition and treatment stakes. Eg my OH has a mild heart condition and was treated in a state of the art centre while the rheumatology dept has moved all over the hospital and is now in a stuffy set of portacabins.
The best support I’ve found has been from other sufferers - have you tried the Health Unlocked forums which cover many conditions? As well as support you often get good advice and things the doctors don’t tell you. In my experience I’ve gained a lot from the forum and many people make very good friends on there as well. Good luck!

My son has RA it started age 28 he is 35 now . He is on every type of medication I have ever heard of and it’s still active. He was bed bound for the first 6 months or so but hold down a full time job . A hard journey too but in this funny old life nobody has an easy ride it seems. Hang on in there . I am really proud of my son for how well he copes

Re the CAR-T cell therapy, many clinical studies require the accepted treatments to have failed before they'll accept someone. (The idea is it would be unethical to experiment when there's an accepted treatment that works.) So it sounds like you might have a good chance of participating in one of those studies. Of course, the added wrinkle is that half the participants don't get the therapy, they're in the control group, so one would have to be prepared for that.

I think the hardest thing about this awful situation is that you have no support. When your tum is making you feel chased by monsters it's even harder to calmly look up doctors, argue with your existing ones, make arrangements to find better ones, and on and on and on. Plus that your bosses show no understanding. Maybe just set one task per day (today I will look up support groups; tomorrow I'll chose a Crohn's 'center of excellence' to contact; then I'll find out who's running CAR-T cell studies; and so on). Do it for half an hour or whatever you can stand, and then spend the rest of the day reclining on your laurels. Even if it doesn't accomplish much, it'll still be more than doing nothing, I'm guessing?

As for your current crew of medicos, that to me has the distinct whiff of people worried about their budget. It's really difficult in your situation and without any support, but my guess would be they don't have your best interests at heart. If there's any way you can move laterally to someone who cares...??

My DH has crohns and it's in remission due to the treatment which used to be called humira. He used to take methotrexate with it also so that could be an option.