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.

My friend's girlfriend had a bag fitted to bypass her non functioning bowel. She too has crohns and had multiple previous operations. It has taken the stress away from toileting, for her. Perhaps you can try the private route to explore an alternative?

and some hugs. I dont know much about the condition and the support available. Is it segmented so the stoma support would be from one organisation, the cancer risks through another, pain managed through a pain clinic. Nightmare to manage if so.

What type of organisation do you work for? Many have employee support lines, or even access to OH.

I am cross on your behalf that work are not taking this seriously. I worked for a bank years ago and a lovely employee in his 30s had crohns and had to have bowel removal and a stoma. He was off work, paid sick leave for 6 months and then definite on going support. So it is possible.

I have a couple of friends and a family member who use stoma bags, family member is acutely embarrassed by it all and has become quite reclusive despite never having had an accident. But they are in their mid 70's so I get it. It is also the result of bowel cancer.

2 friends 1 through cancer ine through chronic have applauded it, life changing, and given them back their freedom.

I get you have had a rough time and I appreciate that there are some issues around the chrons that it won't solve on it's own, but it sounds like the best of a horrible set of options and the bag itself won't be an issue once you get used to it.

https://www.crohnsandcolitis.org.uk/info-support/support-for-you/local-networks

https://crohns-disease.org.uk/building-strength-together-a-guide-to-support-groups-for-crohns-disease/

Sorry you’re going through this OP. Have you been in touch with these organisations for help?

My son's fil has recently with longstanding Crohns and has recently ended up with a stoma. he has found his quality of life hugely improved. I do appreciate it's a massive thing though. I'm sorry you are going through this.

My dad had a stomach fitted and his bowel removed and he said its the best thing he’s ever done. His life has massively improved .

I’m sorry you’re going through. I’m one of these annoying people who looks for solutions rather than offering empathy.

Hopefully some of these might help.

Does your area not have specialistic IBD nurses? Can you transfer your care to a hospital that does? https://www.crohnsandcolitis.org.uk/info-support/support-for-you/ibd-services-map

Crohns helpline
https://www.crohnsandcolitis.org.uk/info-support/support-for-you/helpline-service

Crohns is a recognised disability and is overed under the Equality Act so you should get support from work.

Thank you for the replies and links.

My work has an EAP but I've been logged into the app today looking at it and it's all mild lifestyle stuff. GP appointments for simple stuff, bereavement counselling, mild anxiety and depression virtual counselling. I'm reluctant to phone a mental health crisis line about something so niche and specific because the last thing I need is having to try and explain the details or having someone telling me to go and run a bath to relax. The Crohn's and colitis charity helpline is really limited, they can't provide emotional support or medical advice so I'm not sure what I'd be calling them for. There's just no support from the hospital and my GP tells me it's not their problem and to contact the hospital.

I work in an office environment, sometimes high pressure, not a big company. I don't know if part of the problem is that I haven't explained it very well, or they don't understand that Crohn's is more than a tummy bug. Or maybe because the threat of cancer was there that anything other than that is assumed to be a much better easier outcome?

I was so traumatised after my last surgery I can't even describe the state I was in. It took me years to be able to cope with even normal clothes waistbands pressing on my stomach. I just can't see that I would cope with my body being altered so drastically and constantly having a bag attached to me that I had to manage.

I don't even know what would help I feel so overwhelmed. Maybe there just really is nothing that can be done and I'm being unfair to wish for something.

Thank you. Do you mind me asking if you know what kind of ongoing support he had? Just in general terms.

I'm wondering if maybe my workplace just don't know what to do that could help and might be receptive if I had suggestions or requests of my own. I think my brain has just turned to mush I'm so overwhelmed.

I am so very sorry and I suspect that the "my 76 year old dad is doing fine" messages won't necessarily reassure a younger woman with different issues around the possibility of a stoma.
Here's a resource specifically for women who have been through this: www.colostomyuk.org/introducing-the-stoma-squad/

I'm so sorry. I have ulcerative colitis - thankfully I just about dodged surgery when it was at its worst and it's been well controlled for a number of years now, but I can understand how devastating it must all be. I wish I had something practical to suggest but I can only offer a handhold.

One of my relatives had a stoma fitted and it changed her life for the positive. If I was you I'd go look for balanced stories of people who've had stoma fitted. From your OP it seems you feel it won't make any difference, it might help if you hear the ways it has helped others.

Can you change hospitals? Would they or your GP refer to a center of excellence for IBD? Im shocked there is no treatment or research trials, IBD nurses service or psychological support for you.
DS has similar hard to control Crohns, he had a stoma fitted as an emergency and it was hard. Hes had amazing support from a specialist team and the transfer to adult care has just increased what's available to him. But we are in Ireland.

Can you be signed off sick for a few weeks whilst you come to terms with this? Might help work take it more seriously too.

There are few youtubers with crohns/ibs and stomas if that might help to see. Hannah Witton is one.

I have an ostomy (UC) and I was very quick to choose surgery and am happy with the outcome and how it has affected my quality of life. However, from reading a lot of people's experiences, I would say that the people who are least satisfied with surgery are those that wanted it the least. And that is also ok. If you make the decision to avoid surgery and go down the drug treatment route for as long as possible because you know that is best overall for your mental health and your quality of life, then that is a decision that you should be able to make.

Have you tried changing to a different gastroenterologist or even a different hospital? I don't get the impression that IBD treatment has a strict treatment path, it's more fly by the seat of your pants and see what works. So a second opinion could be very valuable.

If you are willing to be patient then there are always new treatments becoming available to try or you could see if there are any clinical trials you could participate in. I have a feeling CAR-T could be very successful for IBD although it will be years before it is widely available.

I am so sorry for what you are going through. It is the cruelest of diseases. I have ulcerative colitis which is similar so understand where you are and how youvare feeling. I have had some great counselling from crohns and colitis UK in the past, so please contact them. I think i accessed it via my IBD team at the hospital so its also worth contacting your team too. As you say it is quite specific issues so best to get some focused or specialist counselling if you can... but some support would be better than nothing as you will be surprised how many people have direct or indirect experience of the condition. Wishing you all the best x

I have been wondering about this. It would mean much longer journeys and I am a bit worried about going from the frying pan to the fire. I will see if I can work out how I would request this. Or even a second opinion from a specialist centre.

I had been reading about trials and all these other drugs and options so to be told this is it completely blindsided me.

I don't want to have such aggressive permanent surgery if there are drugs and treatments in the pipeline that could have helped me without needing to do that.

I know nothing about these diseases but I believe Hannah Witton on YouTube has a stoma but is hoping to be able to have it reversed in future.

https://www.colostomyuk.org/information/stoma-reversal/

Thank you for the reply. I'm glad you're happy with the outcome and that it's been good for you.

I was told this was an MDT decision so I didn't feel I could ask for a second opinion at the time as I would basically have been asking for someone else at MDT who would have said the same thing. I don't know how to request/obtain an independent second opinion or from another hospital. Whenever I've been offered a second opinion before it's always been from someone in the same team who's been primed to back up the first opinion.

I am wondering if this is being driven more by funding than what might work for me. They said to me before that there's always new drugs coming onto the market and I've read about trials myself (I saw the CAR-T progress and wondered the same as you even though that's a long way away). I just don't understand why now they're saying we've exhausted everything. I thought they might try dual therapy or say they would refer me to a more specialist centre if they couldn't supervise that themselves. I don't know.

Oh, @distraughtandhopelessibd this sounds overwhelming I feel for you

I think I’d try to see a private consultant, even just for a consultation to ask about options and get a second opinion

I had to do this for a gynae thing, and not only did my issue get solved, the consultant referred me back into the nhs for it, and did the procedure herself

So don’t despair yet!

Which region do you live in, OP?

I'm wondering whether it might be possible for you to see a specialist in London on a private basis.

I had Crohns for many years, in and out of hospital, taking a series of different drugs, but never got as far as needing a stoma. I was then unexpectedly and 'miraculously' cured following a full hysterectomy and haven't had a flare up of Crohns since - that was 20 years ago. The doctors couldn't explain it, but did say that there may be a link between the Crohns and my endometriosis that was bad enough to warrant the hysterectomy. Another theory was that the cure was due to the change in hormones. Who knows, but it worked for me.

Google AI tells me Addenbrooks, Nottingham, Sheffield and a few London hospitals have specialist IBD treatment centres. Its worth travelling for I think.

I’m so sorry this is where you are. It sounds utterly exhausting and upsetting.

please consider seeing a private psychologist- not counsellor or therapist, a psychologist that helps people with IBD and related issues. They will help you adapt, cope, come to terms with, accept…. All those things that are painful right now. Whatever your decision about future treatment or stoma, I think it would be good option for you now. Look for a health psychologist or a clinical psychologist working in physical health